Lightning Process??!!!

[Sgt Badass]

Holy crap batman! Just listening to Jeremy Vine about some woman with ME being cured by http://www.lightningprocess.com/

:o

What wizardry is this? A none-existant disease being cured by a none-existant therapy?

[tkingdoll]

I'm totally ignorant about ME, I've heard the name but didn't realise it wasn't real - is it one of those things invented for people who insist there's something wrong but there isn't anything diagnosable? (I believe IBS falls into that category).

[Hazen]

Myalgic Encephalomyelitis, I think I've heard it called 'yuppie flu' -
that's the extent of my knowledge on the subject.

[Admin]

I heard this as I was driving and couldn't believe what they were coming out with. :o

Fortunately there was a doctor interviewed who put a rational case across.

ME or Chronic Fatigue Syndrome often occurs after a viral infection and has been known to occur for many years. It normally just clears up though.

I think that ME that lasts for years on end, this woman had had ME for 4 years, is basically psychosomatic.

She went for this lightning therapy (supposedly based on NLP) and after one session had been cured. As soon as I heard that I thought it was obviously a psychosomatic case.

[Sgt Badass]

I heard the doctor - thank chuff they're now starting to be a bit more rational on Radio2 these days and whoever the doc was, he was very level headed.

The worst thing you can do to someone who has just been 'cured' is tell them "It was in the mind, ahh diddums" but he got across the basics of evidence based testing fairly well.

[Zendal Darkman]

When I used to work for the Benefits Agency, M.E. was very much a controversial topic, with some Adjudicating Officers refusing point blank to regard it as physical disability.

I would like to make one observation. Although people with ME claim to be very weak, they mostly shared a strange characteristic of writing page after page of irrelevant information telling us about every aspect of their life and of the "latest" research into their condition. Whenever we saw a review "letter" that approached the size of a small library, we would call out "M.E." before reading it, and most of he time we were right. No other disability had such an effect on the people who had it.

Years later i read this by Victor Lewis Smith (evening Standard)


"Most curious of all is surely ME, because whenever I write sceptically
about the much-hyped disease (which supposedly robs victims of the ability to walk, speak, or write), I invariably receive scores of lengthy protest letters from sufferers, usually enclosing bulky research documents that they've photocopied down at their local library, en route to the post office. Clearly, I must possess the healing touch, because all that's needed are a few firm words from me and the sick not only take up their beds and walk - they positively jump to their word processors before sprinting to the postbox.

I think M.E. is a crippling condition (I use to award)

[Admin]

You're right Zendal. People who suffer psychosomatic illness really do suffer the symptoms.

I think it's easy to dismiss such people who have conditions that have a high, if not total, psychological component to them but their condition is as real to them as any organic illness.

I came across this when I was looking into the scaremongering claims (aspartame, fluoride etc.) and how they work on people. One of the main reasons that they get really powerful anecdotes is when a somatizer uses one of their 'cures' (an aspartame detox plan for example) and they get instantly cured.

It may seem pointless or unnecessary to speak against treatments like the lightening process, but just because it has helped one person free themself from a psychosomatic condition, it doesn't mean that it going to do that for everyone. It's still selling, rather expensively, false hope to most people.

[Lord Muck oGentry]

ME/CFS is a pretty hot topic just now because of the Gibson Inquiry. Here is a link to some of the stuff that will be put to the inquiry:

http://www.meactionuk.org.uk/The_Gibson_Enquiry.html

The stuff by Williams and by Hooper is quite well known among campaigning groups. I don't pretend to be able to judge this as evidence, and will cheerfully defer to any experts. However, I think it's interesting ( if true) that psychiatric explanations are on the way out.

[tkingdoll]

Since my opening ignorance of this topic I've done a bit of reading, thanks for the links and stuff folks.

It seems to me that it's a difficult condition to make a call on regarding disability benefits etc, because it could easily be faked by people who are just lazy.

And lets be honest, there are very lazy people out there who would jump at the chance to not have to work. Well, not jump. Grunt, maybe.

This reminds me of some research I did a while ago into the huge upsurge in people being signed off from work long-term because of "stress" (I once had a sick note for two months that said "stress" on it, nothing more). Is it because people are leading increasingly stressful lives and cannot cope, or is it that many people see it as a foolproof and unprovable way to get a couple of months paid leave?

I hate to be cynical, but I suspect a lot of the latter. ME figures may be exaggerated for the same reason.

[Admin]

I think it's important to recognise that somatizers are genuine; when they have symptoms - they really do suffer (they are not the malingerers they are often made out to be). The fact that they are prone to undergo 'miracle cures' can add a lot of weight to the claims of alt. meddlers who 'cure' them however, so we need to be aware of their existence but understand them too.

You're right though teek, where there's any ambiguity it can encourage malingerers to take advantage - think of those who 'suffer' back pain and claim benefit.

Btw, I don't claim to be an expert in these matters so if I come out with anything that's obviously wrong - let me know. ;)

[Lord Muck oGentry]

John,

You may be interested in the huge literature on Waddell Signs for nonorganic back pain:

http://en.wikipedia.org/wiki/Waddell's_signs

[Admin]

I've just had a quick skim without following the links, but yes, that is very interesting. A way of checking real from imaginary back pain.

I'll read up on this as it's an area that I am particularly interested in (the difference between real and psychosomatic illness not back pain per se).

Thanks for that O0

[brodski]

I can assure you people here that ME (or Chronic fatigue Syndrome, which is becoming the preferred term) is a very real disease, as my partner has suffered from it for years and now has had to give up work due to it's debilitating effects. Just because it is a real disease, does not mean that it is necessarily a physical rather than mental illness, although I know that I would get lynched in the CFS "community" if I where to voice that opinion too loudly. Because of the stigma which is attached to CFS due to it being seen as an "imaginary" illness most suffers desperately want an organic cause to be found, personally I don't see why mental illness should be seen as any less real than physical illnesses. Can CFS is a debilitating disease, which put many suffers in wheelchairs and makes them unable to take care of themselves, its not just feeling a little tired, its often being unable to move out of bed for days at a time, chronic joint and muscle pain, nausea, memory loss and often confusion.
Incidentally, a diagnosis of CFS is not an easy one to get, first the condition needs to have lasted for at least 6 months, and secondly you have to wait for the doctors to test fro, and exclude, practically every other condition which can cause fatigue. If you want to go on the sick for a bit, it's much easier to get signed off for depression, and you'll suffer much less social stigma.
The way that the medical and sceptical communities often approach conditions such as CFS, telling people presenting with very real symptoms that they're lying or imagining it because they're lazy is exactly what drives so many people with CFS to woos, where at least they won't be belittled for having a disease which modern medicine has not yet found a cause or reliable treatment for.
Carly, at 24, can usually not leave the house on her own, and when she does leave the house she has to use a walking stick, which has completely destroyed her sense of independence and her self confidence, that is aside from the almost constant pain she is in.. To have people who admittedly know nothing about this condition pronounce it imaginary and self inflicted is bad enough, to have this from self professed sceptics I find even more disappointing.
Ok, rant over.

[Sgt Badass]

Trouble is, with the diagnosis of ME being so difficult there are many people who are willing to jump on the bandwaggon to try to get some sympathy or even worse, welfare.

CFS is indeed very real whatever the causes are, but it can easily be faked. I have personally known people hobble around in front of other complaining they have it then when they thought they were not being watched suddenly take on a whole new persona.

It's like back-ache. Extremely hard to diagnose clinically. Again, I have personal experience of a relative who spent months going to and from the doctor's surgery having various tests just so they could claim benefit. They didn't have anyback injury, at weekends they were laying slabs in the back garden. The same relative also tried to claim for hearling loss. Scumbag.

So, whilst CFS may indeed be very real and accepted, it should also be accepted that some people are trying it on. And certainly the woman who had the miraculous recovery mentioned at the beginning of this post would, in my mind, be classed as a 'dodgy' case simply because 'The lightening process' is a big pile of crap.

Hope your partner gets better by the way. Trust me, no one here means to target anyone personally, it's beliefs we challenge, not people.

[Admin]

To have people who admittedly know nothing about this condition pronounce it imaginary and self inflicted is bad enough, to have this from self professed sceptics I find even more disappointing.
Ok, rant over.


To be fair, I don't think that people are saying that ME/CFS is imaginary or self-inflicted; merely that in some cases it could be mimicked by the unscrupulous due to the fact it's difficult to diagnose (there's no definitive test I believe).

I have pointed out in this thread, and elsewhere on these boards, that psychosomatic illness is as real as organic illness. The symptoms, the pain, the misery are just as real for both types of illness.

If ME is indeed a wholly psychosomatic disorder then it really needs to be recognised as such. The problem with psychosomatic illnesses however, is that those who suffer from them utterly reject the idea that it could be psychosomatic.

So apologies if it looked like ME was being dismissed as 'all in the mind' and there's 'nothing really wrong with you' but that's not what was intended.

[brodski]

To be fair, I don't think that people are saying that ME/CFS is imaginary or self-inflicted; merely that in some cases it could be mimicked by the unscrupulous due to the fact it's difficult to diagnose (there's no definitive test I believe).

I have pointed out in this thread, and elsewhere on these boards, that psychosomatic illness is as real as organic illness. The symptoms, the pain, the misery are just as real for both types of illness.

If ME is indeed a wholly psychosomatic disorder then it really needs to be recognised as such. The problem with psychosomatic illnesses however, is that those who suffer from them utterly reject the idea that it could be psychosomatic.

So apologies if it looked like ME was being dismissed as 'all in the mind' and there's 'nothing really wrong with you' but that's not what was intended.


Sorry, I did fly off the handle a little, on reflection I do see what many of you are trying to say, and i actually agree with most, but the early comments in this thread seemed too typical of the prejudice and stigma this disease often generates.
I understand only too well the problems of getting those with ME/CFS to acknowledge that it may be psychosomatic, the problem is too many people associate that with a disease not being "real".
I reject the idea that there are lots of people faking me/cfs in order to get benefits, as it is much, much easier to fake conditions such as depression, which will generally get you less scrutiny by the DWP, and is much easier to get a diagnosis for.
Part of the reason some posts hacked me off is that so many people with CFS are targeted by, and fall victim to the woos, I've had a number of people tell me horror stories about "having" to spend most of their benefits on homeopathic consultations, because there’s nothing the GP can do for them. CFS is very susceptible to the placebo effect for a number of reasons,
1 mood plays a massive part in the severity of many of the symptoms,
2 the severity of the symptoms can fluctuate quite rapidly, Carly can be bed ridden one day, and feeling good enough to leave the house a couple of days later for instance and
3 people with CFS often have very poor memories, unless they carefully document their symptoms they cant remember exactly how they felt a month or two ago, if someone in "authority" such as a homeopath tells them they're getting better, many of them will believe the homeopath, as it's the only information they have to go on.

[Admin]

I think it is very important to make the point that psychosomatic is very, very real; and it's not just a case of, say, changing your mind about it and it will go away.

The reasons for it must be very complex, certainly not consciously made, and not at all understood. This does mean that conventional treatments have little to offer and this leaves the way for alternative practitioners who are prepared to sell false hope whereas real doctors are not allowed to.

I don't know a great deal about ME/CFS but I did come across it when I was looking into psychosomatic illnesses. The upside is that it does seem to clear up of its own accord, although it can last several years.

And you're right to criticise Brodski; as skeptics we should be striving to understand things at a deeper level - not resorting to stereotypes or general misconceptions.

[Sgt Badass]

Indeed, us skeptics should learn, and I think we do, but thanks for pointing it out.

We all take from personal experience but we should note that personal experience doesn't equal scientific fact - which is what the woos believe.

By the way, it's not just ME, depression and CFS that sends people to the woo side. Many people go because their GP just can't listen. It seems that most doctors are just pill pushers, simply because they don't have time to spend with people.

[brodski]

We all take from personal experience but we should note that personal experience doesn't equal scientific fact - which is what the woos believe.

I understand what you are saying BUT it depends vastly on what we are taking from personal experience, and what claims we make.
Given the number of people I know and trust ,who claim to suffer from a certain set of symptoms, I am face with 2 possibilities, either they are lying to me, and are engaged in some kind of elaborate hoax or conspiracy, or they really are suffering from these symptoms.
There is no way they could be mistaken about feeling the way they claim to feel, HOWEAVER this makes no claim about the nature and cause of those symptoms.
given the evidence which is presented to me, and the possible causes for those "results", I find that it is much more likely that CFS does exist, but possibly "only" as a psychosomatic illness.
I think we have to be careful of dismissing all anecdotal evidence, especially when it makes no particular remarkable claim.

[Ginger Rogers]

Hello
interesting subject. I suffer from IBS and other digestive problems, feel tired a lot and suffer from anxiety and such.
I am fully aware that these are 'phsychosomatic' illnesses, but actually for me that makes the problem far worse. I'v got doctors basically telling me it's 'all in the mind' and nothing wrong with me, but CLEARLY there is something wrong with me or I wouldn't feel like this.

I can see how brodski got defensive there, you simply cannot tar everyone with the same brush. No doubt some people do 'fake' illness or play on their symptoms to get benefits or whatever, and we all think the same I should imagine about those types of people.
But the mind is very powerful and you can certainly 'think' yourself into being ill.

Perhaps it's time that medical science started to seriously address these issues, because there has to be a helluva lot of really ill people out there being told there's nothing wrong with them. That simply lowers their self esteem and confidence which is simply going to amplify the problem and therefore the symptoms. Its no wonder is it, that people try the 'woo side' even if there's substantial evidence to suggest these therapies don't work, take it from one who knows you try Anything when you're desperate.

[odeed]

Saw a report about this, on the northeast lunchtime news today, didn't catch all of it, but from what I did gather it costs £600 for a 3 day course, which seems to be powerpoint presentation about linking body and mind in positive thought/energy.

One of the counsellors/practitioners was a former ME sufferer, who wanted to help others (yeah:undecided:), a from what I could tell he had no medical background (nice house though).

Of course after the snippet they had the disclaimer from the NorthEast ME society that "they would not recommend this treatment".

[GDN2112]

Hi Guys

I was the Lightning Process Practioner on the Tele last night (Look North). I find your comments interesting. (I am also glad you like the house)

I understand where some of your comments come from, I have to admit I was exactly like that about six months before doing it. I thought what arrogant fool can say that they can teach people a tool that can rapidly aid them in recovery from ME\CFS in only 3 days. But I had tried everything else including vitamin injections and seeing specalists (for them just to tell me there was nothing wrong).

i am not going to preach this to you, It is for u guys to decide for your self. All I can say is it worked for me [link removed] it has worked for my clients who have traveled from as far a Norway. I know that ME is a physical illness I have been there I do not joke about ME, it was a living hell, not being able to see my son because I was in bed was real and it is something I can never get back.

But never the less, what ever you guys think
Happy Christmas,

[Admin]

I'm sure that you were very happy with the exposure and advertising that appearing on Look North gave you GDN, but the fact that one or two people may appear to recover after your 'therapy' does not actually prove it works.

It would be interesting to see how many people pay their £600 and don't improve. Then we may get a truer picture of what is actually going on.

And just a reminder that the North East ME society said that "they would not recommend this treatment" (!)

[GDN2112]

There are some very good points you raise.

we as an association have a 97% success rate, after every seminar we get the clients to fill in the form and email it to The creator. I currently have a 100% success rate.

If you think about it, personally I spent well over £10,000 to try all sorts of therapies and medical treatments to get well nothing helped. The Lightning process did I personally would try anything that could possibly help me recover. If you have suffered from ME for 10 years and you visit a therapist or private specalist you could pay between £20 to £200 may be more per session. if you have gone every week for over a year you might of spent more than £600.00 and you might not get any improvement. but you stick at it because you have heard it helped.

But I do understand your argument, but it does work, I had a girl from norway arrive in a wheel chair this week and on day 2 arrive walking and that night she walked round the shops for six hours. She had not done this for 6 years.

I would never try and change your beliefs, that is your choice i respect that.

take care, nice chatting to you

[Fiona]

Without wishing to get into the efficacy of this treatment I must say I was surprised to see an easy assumption that this condition does not exist or is psycholgical/psychiatric in nature as late as 2006. So far as I know there is good evidence it is a physical illness. Research has not yet produced a definitive cause and treatment but there is some evidence to support a physical change which may improve diagnosis and treatment. For example

http://www.sciencedaily.com/releases/2006/01/060110013424.htm

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0507A&L=CO-CURE&P=R3807

[GDN2112]

Hi fiona

I agree it is a phsyical illness, infact the CDC have rated it as a disease of the neurological system. But in most illnesses there is a psycholgical element. I know its phsyical, no one would choose to be unable to walk or want to be bed bound for several years with out noise or bright lights.

ME can open many doors for debates and there is always some report that can challenge another. Thats what makes it so difficult to treat.

But I believe to treat ME you have to think completely outside the box, doctors have openly said they find it difficult to treat, in fact alternative medicine had more success over medical treatment for ME\CFS.

Take care

[Admin]

If ME/CFS are truly physical conditions then I cannot see how a placebo intervention like the Lightning Process can effect a cure - especially within a matter of hours as claimed.

On the other hand, if they are psychosomatic (as is still widely believed) then a placebo intervention could very well bring about such a 'miracle' cure.

If they are psychosomatic conditions then something like the Lightning Process actually could be a useful intervention as conventional treatments do nothing for psychosomatic illnesses. Of course, its effectiveness would still have to be evaluated to see just how effective it actually is (claims of 97% or 100% success rates being extremely unlikely to be true).

It may be that there are some people whose ME/CFS has a physical cause and some whose is psychosomatic but they're all considered as the same thing when in fact they are different.

But the fact that some people seem to have been cured by the Lightning Process suggests to me that there is a strong psychosomatic element to at least some of the people who suffer these conditions.

[Admin]

I noticed an entry on the forum at the psychologist.org.uk mentioning this process: (source (http://www.thepsychologist.org.uk/legacyforum/legacyforum_home.cfm?&ForumID=1&fuseAction=displayMessage&messageID=5896)).

I've copied the entry in full as I note that they will be changing their forum software soon and the entry may be lost.


The BBC has recently devoted attention to the Lightning Process. This is described by the inventor as a training programme which apparently cures 90% of people with CFS. It is based on the assumption that the illness is perpetuated by raised/abnormal levels of adrenalin and cortisol (there is no evidence for the former, no consistent abnormality re the latter, but the inventor doesn't seem too bothered about such facts).

Talking to patients, it seems that the LP is associated with high rates of relapse which the inventor blames on not keeping to the training regime. If you fail, it's your fault. Some patients describe something akin to brainwashing.

I thought I'd flag this up, in case anyone asks about this intervention. I can't find any sound evidence supporting the theory behind it or its efficacy. However, like other programmes focusing on negative thoughts and behaviours, it may help those with emotional complications associated with fatigue, e.g. fear, anxiety, avoidance. I've recommended that patients try CBT first. It's on the NHS (LP costs £600 plus), and therapists are accountable.

It is claimed that it bears no resemblance to Mickel or Reverse therapy, but I can't find any evidence to support that. They seem remarkably similar to me.

Has anyone found a patient who did not suffer from stress and anxiety but also improved on LP?

The dishonesty behind LP (i.e. obfuscation about its psychological basis) makes me uncomfortable.

The BBC interveiwed tow people who are studying LP. One is a practitioner. ~There was no alternative view from an expert, and no answer to the question what LP involves. Apparently, it's too difficult to explain simply. It takes 9 hours to do that.


Author: Ellen Marianne Goudsmit
This first point of note is the seemingly complete lack of information about what the Lightning Process actually consists of and what the real success rate of it is. As I said earlier, claims of 90% or higher are extremely unlikely to be true.

The author of this entry also states that the LP is "associated with high rates of relapse" and that some patients say that LP is "something akin to brainwashing". Now I'm reading between the lines somewhat here but this is suggestive of a technique that is psychologically aggressive and which forces a strong compliance response in the patient whilst they are undergoing the treatment.

This, of course, may give the impression that the treatment works well; but it really doesn't work if patients relapse once the treatment is over.

And the practise of blaming the patient for the failure of a miraculous treatment is all too familiar to skeptics.

Obviously ME/CFS is a complex and perplexing condition that is difficult to treat. Unfortunately, this makes sufferers of these conditions an easy target for those offering miraculous cures and whose claims are bolstered by a credulous media prepared to feature stories of cures based on anecdotes.

It would be nice to see some transparency and honesty from proponents of LP rather than grandiose claims backed by obfuscation. Then at least it could be assessed to see if it really is of use for some patients.

[0800]

I have had M.E. on and off for about 4 years now- and I would like to point out [for me anyway] I have NO psychosomatic symptoms or causes. I am a naturally positive person and although this illness has broken up my school life- preventing me from socialising or playing sport - I have stayed positive throughout my bouts of illness- I have never had depression and do not enjoy missing out on a normal childhood.

I hadn’t had a relapse for 2 years- until I stupidly played in a tennis match about 2 months ago [as we all thought I had fully recovered] I am now back to where I started 4 years ago.

I had heard about the lightening process previously- but never really believed it- you wouldn't believe the amount of times my parents have been scammed out of ridiculous amounts of money for a 'miracle cure!' But we were so desperate we decided to try it out mainly because I was just reaching my A level exams and desperate to be able to do them to get into university.

I tried my best to keep an open mind about it all- but from the first session I knew this was not for me- it consisted of 4 hours of watching a presentation - not really any interaction with the 'therapist' which I was esp. shocked about as I was the only one in this session! They expected me to just sit there and listen without any breaks- how do they think this is possible for someone who finds it hard concentrating and feels awful? The next day I was determined to, again, keep an open mind and really try. Well as soon as the therapist told me that the reason I got M.E. was because my parents were unconsciously putting pressure on me by being enthusiastic about everything I do [what a load of @@**!] and because I feel that I have to compete with my 2 older brothers and she actually had the cheek to tell me that they would be upset when I got better because they depended on me being ill [let me point out I have a brilliant relationship with my family and they make me feel happy the way I am whatever I do!]- I completely blocked the whole process out- I feel that she didn't listen to anything I said- and she had a text book reason to why everyone gets M.E.

They also say that if you do not recover after this process then it is because you do not want to get better- well I am sorry but does that not remind you of Freud’s theories? Constantly backing them up so no one can say that it doesn’t work?

However I would like to point out that it does work with some people- in fact i know of a few women who have been wheelchair bound for years and were able to walk after the process- but you have to question the profile of the people that it helps? Having had long periods of not being ill- I have a lot of support from friends and I know when I do have a relapse- that in time I will get better in time- Some people have much more severe symptoms and perhaps it only helps these people who probably and sadly feel very alienated by their illness.

I just want to ask you all not to judge and comment so confidently about knowing that M.E. is psychological- because for some people it certainly is not- and until you experience it - or a member of your family does- then you have no idea how debilitating and horrible it is. I would give anything to not have it however I do know that there are things that are a lot worse out there!

Ok rant over!!

[k8Fisher]

Such a relief to get an account from someone with ME whose actually attended the sessions!!!??! I agree with the other ME sufferers how many organisations HAVE to acknowledge ME exists before we stop getting these "all in the mind" comments from professionals and non professionals alike.

I was referred to a psychologist and received similar "negativity" as you seem to have experienced on the second day of the three day session. Quite supprising they didnt really acknowledge the fact that sitting in front of a presentation for a long period wasnt suitable for an ME sufferer. I too have problems with energy and sometimes get to the point that my energy is so low I cant take visual or auditory information.

Mind if I ask if youve heard of another therapy called Buteyko. I happen to have been affected by adult chickenpox which attacked my lungs which subsequently led to ME. My homeopath another ME sufferer herself substained a viral attack on her body which damaged her heart and led to ME. She has suggested that buteyoko though usually used for those with chronic breathing illnesses can improve energy levels.

Have you heard of this, and once again Id like to thank you for saving me £600 and more importantly yet another LET DOWN. I joined the list to thank you for your post.

Kindest Regards

Kate Fisher

[lazerustheduck]

First time I've noticed this thread, didn't realise I was a purveyor of Woo just by being ill.
From my experience of people I know that have been on the Lightning Process, it works on the principal of making people feel good for about a week and taking their success rate from that week. A week or two after that most sufferers I know suffer a crash which they blame on themselves. It is obvious that the Lightning Process can't be to blame because so many people have been 'cured'. I've not met anyone that can show any permanent improvement that can be attributed to the Process and lots of people that are worse off.

[Mongrel]

Mind if I ask if youve heard of another therapy called Buteyko. I happen to have been affected by adult chickenpox which attacked my lungs which subsequently led to ME. My homeopath another ME sufferer herself substained a viral attack on her body which damaged her heart and led to ME. She has suggested that buteyoko though usually used for those with chronic breathing illnesses can improve energy levels.

I had a quick read of this site (http://www.buteyko.com/) so if you're information is different links would be nice :smiley:
1) Ask "Which energy levels and how are they measured?". Whilst it could be metaphorical normally it's vitalism (http://en.wikipedia.org/wiki/Vitalism) and is at best useless.

2) Breathing exercises for an asthmatic can be useful a small amount of the time (my Mother tended towards wheezy then getting into a panic attack and spiralling to ambulance time - proper breathing and relaxation techniques could have reduced the severity of the attack). Asthma is a very serious illness however that is very well understood, the treatment is simple and effective.

3) The trials (no links to actual papers and I'm not scrubbing around Pubmed this time of night) are old, no follow ups since 1995, and only show a fraction of the data; so either they cherry picked a few results, had poor procedure or did do follow ups and buried them due to poor results.

4) Without knowing how your lung problems present it's hard to say whether what could be useful. General breathing\relaxation techniques may be of assistance or they may not, given that you'd almost certainly be paying for these yourself I'd probably be edging towards not. Have a chat with your GP or specialist (not homeopath, unless they've got an MD certificate on the wall) and see what they say.

[skbuncks]

There are several clinical studies listed in wiki (http://en.wikipedia.org/wiki/Buteyko_method#Clinical_Studies).
The conclusions seem to indicate that the Buteyko breathing techniques may be useful in the management of mild ashthma. patients who have used the techniques have shown a reduction in the amount of medication used in control of their condition with no decrease in lung function.
Interestingly in studies comparing Buteyko with other similar breathing exercises both groups exhibited a reduction in ashthma symptoms.


Breathing techniques may be useful in the management of patients with mild asthma symptoms who use a reliever frequently, but there is no evidence to favour shallow breathing over non-specific upper body exercises

A 2000 New Zealand study concludes that


Even though no study has indicated exactly why Buteyko is so effective at controlling asthma, if a drug could show these results, then it is likely that it would be used widely in asthma control

Whilst I can see a possible connection for the use of Buteyko for the alleviation of breathing difficulties arising from conditions other than ashthma, like those exhibited by Kate at post #30, I see no connection for the treatment of ME in general.

skb

[Eirran]

I have not been aware of this thread before now.

1. ME is a real disease.
It has been recognized as a neurological disease by WHO since 1969.

CFS was introduces as a name for this disease in 1988 in USA.
Much of the confusion about ME or CFS is due to the fact that there are several diagnostic and/or research criterias out there.
Some of these criterias are broader than others.
In my mind some of these (as the infamous English Oxford-criterias) do not speak of ME, but of chronic fatigue in a broader sense, which also includes chronic fatigue of psychosomatic or psychiatric reasons.

Incidentally one of the members of the conference that settled the name CFS, Anthony Komaroff, now states that they at that time were not concerned that the name would trivialize the disease, but they were wrong. He is now a member of a committee to change the name and clearly believes that there is enough scientific proof to call the disease ME Myalgic Encephalopathy.

There is at the present more than 4000 research papers that show biomedical signs in ME.

Unfortunately in the UK, most research is on the "psychic nature" of CFS.
One of the reasons for this is called: "Simon Wessely".

His position has made the MRC consistently funding research on the basis the ME is psychosomatic.
A very good documentation of this is given in Martin Walkers book: Skewed

Someone asked the question: Why can then a process like the Lightning Process (LP) cure a neurological disease?

My answer is that it cannot.
Let’s see how Parker himself describes LP:

"THE PHYSIOLOGICAL CATCH 22
Many sufferers they find themselves stuck in the following downward spiral

1. You fall ill due to an initial 'bug', chemical or in some cases stress, or other external factor that started your M.E. This event causes extreme demands on your immune and neurological system.

2. You feel very unwell. The symptoms were either very strong or lasted so long that you begin to wonder if you'd ever get better. You consult your doctor and specialists in a number of fields, but nobody seems to have any answers, or provide much useful help, and the illness continues.

3. Your physical response to the illness now combined, understandably, with these concerns for your future, creates even more for your body to deal with. This in turn makes your body produce the hormones adrenaline (also known as epinephrine), nor-adrenaline and cortical. The powerful hormones are a good and normal response to short term stress, but long term production of them exhausts us, it affects our blood sugar and thyroid levels, it suppresses (and messes up the proper regulation of) our immune system and makes us prone to illness and tiredness…..this unfortunately makes you loop back to step 2."

In an interview, Parker also says that this adrenaline loop is not present in everyone with ME, but he has found that it is present in many ME-sufferes.
He also believes that ME and Fibromaylgia are one and the same condition, something that has been proven scientifically time and time again not to be true.

This is a very natural process when you get sick, especially with a disease where there, at present, is no cure.
But all of this is a description of "being ill" not "getting ill".

So if a process like LP can make you better at "being ill", maybe be able to do a lot of things that you could not do for a very long time, it is clear to me that you "feel well" maybe up to the point that you feel cured.

But it's all about managing a disease, not curing it.

[thelightningprocess]

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[NorthernSoul]

A truly great process - using your mind to change your body to overcome a truly physical disease.

Are you familiar with the placebo effect?

[johnny74]

I've had "M.E." since 2005 and I am a little surprised to find so many members of this forum who think it's a made up disease. Believe me, if I could shake it off I would have. It has no benefits and has nearly led to me losing my job. Doctors will not diagnose it.

I haven't tried the Lightning Process but what I would say is that just because someone is charging money for something doesn't mean that it doesn't work. However, the fact that the guy behind it is principally an osteopath worries me a little.

As far as the placebo effect goes, don't forget that the placebo effect is an integral part of any treatment, and especially so with anything that works via NLP, or other psychological manipulations. A cure is a cure regardless of how it works.

[Swiftlady]

Thank you for the very helpful info on the Lightning Process.

It reminded me of some meditation work we did with a friend who has the pain variant of ME - mine is painless thank heavens.
We were doing simple confidence building and healing work. Each of us in turn took centre position while the others stroked their arms and legs, and we all sang their name repeatedly plus encouraging phrases about being strong and well and successful in whatever way that person needed it.
You can see the suggestion effect is simple but powerful due to its flooding technique and done on a basis of trust with people we know.

Well this one time the effects were startling. My friend, who lives half in a wheelchair and hasn't walked without a stick in 10 years, the next morning got out of bed and walked without her stick.
We were all happy for her. But the effect wore off by the evening and we concluded it was just a nice encouraging sign of how well she wsa doing with diet exercise herbs etc.

Now it sounds like this Lightning Process is a slightly less pleasant version of what we did. Interestingly my friend said she found it very scary to go so suddenly into active walking. She was honest enough to say she didn't feel she could cope with the sudden transition. I should think her weakened muscles would have found it tough too!

It is possible to use mind over matter to do extraordinary things. But it isn't a good idea except in emergency to use it to do sudden huge things. I have no doubt that even when I was very weak, so unable to pick my baby up and carry him, I could have lifted a car off him if his life was in danger. That kind of hormone drenched 'miracle' is commonplace.
But afterwards my own body would have suffered horrendous after effects. Just as yours would if you climbed a mountain at top speed without stopping!

So I think "instant" remedies are not recommended. The system needs time to go through stages of healing and acclimatisation. Not walking/ walking. Carrying bags of shopping/ relying on helpers. These things change your life enormously.

-----------------------------------------
I have had ME for 48 years since 13yrs old.
Frequent episodes of collapse but just accepted I had this fiercely feverish illness at times.
During a long recovery from having my child when still weak I got PID. I think the high antibiotic dose finished me off. I was then bedridden for years.
18 years later I'm still fighting.

STRICT DIET is essential. NO alcohol, NO sugar, NO tea no coffee, and NO bread or wheat as routine. Nowadays I can have any of these as as occasional treats.
Probiotics are important to balance the gut flora.

EXERCISE I discovered 'graduated exercise' before researchers did.
My version is just to keep bits of my body moving as much as is possible in the current condition that day. So I stretch feet and legs as I lie in bed for example. Whatever my ability, lying down stretches, walking to another room, modest walks outside, swimming ... The trick is not to overdo it but to move as much as I can - not easy as all ME people know.

ECHINACEA is my lifesaver. Very very safe herb.
1000mg a day, 3000-6000 if weak up to 2000mg every 4 hours if bad.
It simply boosts the immune system.
Can be taken with antibiotics and should be to help balance the damage they do. I have managed not to have any not even for abscesses for 15 years and counting.

----------------------------------------
I was hurt and angered by the first post on this thread and I am not flannelled by protests later that all it's saying is the nature of ME makes it vulnerable to faking.
Post 1: A none-existant disease (Sgt Badass)
However I love intelligent analysis so I shall enjoy exploring this forum.

Like most other ME sufferers I would do anything that didn't harm my loved ones to live OK. One of the most appalling aspects is to be struggling to do ordinary things, huge efforts, and so much collapse + try again, only to have someone sneer at you as a fake.

Any chronic condition that goes on and on endlessly DOES have a psychosomatic component. But that's easy to explain. It's simply depressing living such a ghastly limited life.
I've seen the waves of depression that go with diabetes, or long term cancer - no different.
Unable to play with my child on the floor having to watch others do it, unable to pick him up. The excruciating efforts to make sure he was clean and fed leaving me shaking with exhaustion.
Try doing one small bowl of washing up and it takes over an hour - a normal person would do it in 10 mins. You do a few mins, sit for 15, then try again. You're ridiculously proud you did it - then you see or hear a comment that you're a fake or it's "in your mind."
Then add in this goes on for years - 2 years - 5 years - 10 years - 15 years - a lifetime.
YOU'D get depressed at times too!

I think my worst point was when my own mother burst out accusing me of being a fake. All in my mind. As a practising psychotherapist and a damn good one I'd checked this and I knew it for the rubbish it is.
What she was accusing me of was tyrannising my husband and child, limiting their lives, because I was too neurotic to get my act together.
No further comment on THAT.

My heartfelt thanks to my strong loving husband who has never doubted me, constantly encouraged me and shared my triumphs.
To my now grown up son too who learned as he grew up to be strong and kind and caring to those more limited than he is. Who uncomplainingly does horrible jobs like clearing up catshit! because I cannot.
I am deeply lucky to be so loved and supported.

[NorthernSoul]

So, ME is a neurological disorder that manifests it self as physical pain or fatigue even when there is no reason for that pain or fatigue. Can a doctor not therefore, and I suspect I'm looking at this in a very 2D fashion, just throw the patient some placebos, tell them it's a cure and send them on their way? Could patients be treated by therapy? And what is the connection, seemingly, between ME and woo woo?

[Trinoc]

So, ME is a neurological disorder that manifests it self as physical pain or fatigue even when there is no reason for that pain or fatigue. Can a doctor not therefore, and I suspect I'm looking at this in a very 2D fashion, just throw the patient some placebos, tell them it's a cure and send them on their way? Could patients be treated by therapy?
If ME is a neurological disorder that manifests it self as physical pain or fatigue, then surely the cause of the pain or fatigue is the neurological disorder. Just as a cold is a disease that manifests itself as sneezing, so the cause of the sneezing is the cold infection.

[NorthernSoul]

If ME is a neurological disorder that manifests it self as physical pain or fatigue, then surely the cause of the pain or fatigue is the neurological disorder. Just as a cold is a disease that manifests itself as sneezing, so the cause of the sneezing is the cold infection.

Yes I believe that's what I was getting at...

[Trinoc]

Yes I believe that's what I was getting at...
OK, my mistake. It appeared to me that you were saying that as the symptoms had no cause, then they could be treated with something with no effect, i.e. a placebo.

The placebo effect might be a valid treatment - it has worked on much more positively identifiable symptoms than these - but that doesn't make it something with no effect. Nor is the placebo effect something that can only be effective in cases where symptoms have no cause.

What do you mean by "treated by therapy"? Surely "therapy" is a synonym for "treatment" ... of do you mean psychotherapy? As far as I know, psychotherapy is only applicable to psychological problems, not neurological ones (those which have a physical cause in the brain or nervous system). I suppose it's possible though that psychotherapy could act as a sort of placebo even in problems which do have a physical cause.

[NorthernSoul]

I think I'm probably unclear on what the difference is between psychological and neurological illnesses...

[Matt]

I think I'm probably unclear on what the difference is between psychological and neurological illnesses...

Psychological ~= software
Neurological ~= hardware

[NorthernSoul]

Sure, I get that much, but what is the software? Chemicals? Memories etched on the brain?

[NorthernSoul]

For the record, i havnt a clue whats going on with my signature

[Trinoc]

Sure, I get that much, but what is the software? Chemicals? Memories etched on the brain?
"Software" is the information contained in the brain at any time, rather than the physical connections of neurons etc. The distinction isn't very clear-cut in the brain's case since information may well be stored as physical changes to neurons ... but the distinction is fairly clear between, say, epilepsy (neurological, "hardware") and paranoia (psychological, "software").

[Swiftlady]

I think, in avoiding the shallow approach of "it's all in the mind" we must nonetheless recognise the important role of psychology.

ME has a lot to do with the immune system, as it worsens whenever one gets a commojn bug, cold, tummy upset etc which unlike other people has a much worse effect and takes weeks to recover. Echinacea which supports the immune system is a core aid in fighting ME.

The immune system in turn seems to be influenced by psychology. I have learned that it's important for me to cultivate positive attitudes. If I get stressed or depressed, particularly by others being unfair or cruel to me, the lurgy erupts. (That's one reason why attacks on us accusing us of faking are particularly worrying!)

Conversely if I can stay cheerful and optimistic I have a better chance of staying in control of the symptoms. There is I think no hope of clearing it all together but it IS possible to control its effects well enough to live an almost-normal life.

This interaction between mood and immune system can be accounted for hormonally. Similarly gentle exercise - even if only circling the ankles lying down! stimulates positive hormones.

All this is reinforced but what I've learned from other sufferers on the huge international networks of ME. Since we get little help, and often destructive input from medicals, the self help networks are vital to us. Frequently I dfind that I've worked out something that helps - like the mini-exercise efforts, then I hear it from other HE people (or vice versa), and THEN around 2 - 3 years later research lumbers along suggesting just this is a good idea.

[Mulder]

The 'lightning treatment' sounds very like a fairly conventional stress treatment to me. That would make you feel better about many aspects of your life. If ME is psychological, the treatment could well be beneficial.

[NorthernSoul]

I think I might pass send the link to this thread to Steve Novella at SGU, just to see his take on it as a neurologist (+ I've looking for a reason to e-mail those guys...quite sad)

[Swiftlady]

The 'lightning treatment' sounds very like a fairly conventional stress treatment to me. That would make you feel better about many aspects of your life. If ME is psychological, the treatment could well be beneficial.

I think it has a strong psychological component. I can certainly work on the physical effects and reduce them by working through my state of mind.

That isn't enough by a long chalk - there's a lot I have to do physically as well. Much of it is very mechanical indeed. Strict diet, exercise regime, it's as complicated as living as a diabetic.

When I've come across "psycholosomatic cures" they don't last very long at all. They can have fantastic effects but ...
They seem like hypnotising someone to stop smoking. It can work, and gives a useful boost to the effort to stop, a window of opportunity.
But then the underlying causes make themselves felt and the old habit reasserts itself. If the person doesn't use other methods as well hypnotism doesn't have a lasting effect.

Then there is also the virus in my blood. That ain't psych.

[Pebble]

The immune system is being mentioned quite frequently in this thread, rightly so as this is indeed one of the main areas of research in CFS, however the bulk of the data are still in the realms of associations rather than cause and effect:


Brain Behav Immun. 2008 Dec 11. [Epub ahead of print]

Association of peripheral inflammatory markers with chronic fatigue in a population-based sample.
Raison CL, Lin JM, Reeves WC.
Department of Psychiatry and Behavioral Sciences, Emory University School of Medicine, 1365C Clifton Road, Room 5004, Atlanta, GA 30322, USA.
Alterations in the innate immune response may contribute to the pathogenesis of chronic fatigue syndrome (CFS). However, studies have been limited by small sample sizes, use of patients from tertiary care settings, inappropriate selection of controls, and failure to control for confounding demographic, medical and behavioral factors independently associated with immune activity. It is also not known whether specific symptoms account for observed associations between CFS and the innate immune response. To address these limitations, the current study examined plasma concentrations of high-sensitivity c-reactive protein (hs-CRP), white blood cell count (WBC) and a combined inflammation factor in a large population-based sample. Log-transformed mean plasma concentrations of hs-CRP were increased in subjects with CFS (n=102) and in subjects with unwellness symptoms that did not meet diagnostic criteria for CFS (defined as "insufficient fatigue" [ISF]) (n=240) when compared to subjects who were well (n=115). Log transformed WBC was increased in ISF and was increased at a trend level in CFS. The combined inflammation factor was increased in both CFS and ISF. Subjects with CFS and ISF did not differ on any of the inflammation measures. In the entire subject population, the physical component summary score (PCS), but not the mental component summary score (MCS), from the Medical Outcomes Study Short Form-36 (SF-36) was negatively associated with each of the inflammation measures. Depressive symptoms were also associated with increased log hs-CRP. After adjustment for age, sex, race, location of residence, BMI, depressive status and immune-modulating medications, subjects classified as ISF continued to demonstrate increased log hs-CRP, WBC and elevations on the inflammation factor when compared to well controls; however, associations between CFS and log hs-CRP and the inflammation factor were no longer statistically significant. After adjustment, PCS score also remained independently associated each of the inflammation measures. These findings support a role for innate immune activation in unexplained fatigue and unwellness, but do not suggest that immune activation is specific to CFS.


Pharmacogenomics. 2009 Jan;10(1):35-42.

A Bayesian approach to gene-gene and gene-environment interactions in chronic fatigue syndrome.
Lin E, Hsu SY.
Vita Genomics, Inc., Jung-Shing Road, Wugu Shiang, Taipei, Taiwan. eugene.lin@vitagenomics.com
INTRODUCTION: In the study of genomics, it is essential to address gene-gene and gene-environment interactions for describing the complex traits that involves disease-related mechanisms. In this work, our goal is to detect gene-gene and gene-environment interactions resulting from the analysis of chronic fatigue syndrome patients' genetic and demographic factors including SNPs, age, gender and BMI. MATERIALS & METHODS: We employed the dataset that was original to the previous study by the Centers for Disease Control and Prevention Chronic Fatigue Syndrome Research Group. To investigate gene-gene and gene-environment interactions, we implemented a Bayesian based method for identifying significant interactions between factors. Here, we employed a two-stage Bayesian variable selection methodology based on Markov Chain Monte Carlo approaches. RESULTS: By applying our Bayesian based approach, NR3C1 was found in the significant two-locus gene-gene effect model, as well as in the significant two-factor gene-environment effect model. Furthermore, a significant gene-environment interaction was identified between NR3C1 and gender. These results support the hypothesis that NR3C1 and gender may play a role in biological mechanisms associated with chronic fatigue syndrome. CONCLUSION: We demonstrated that our Bayesian based approach is a promising method to assess the gene-gene and gene-environment interactions in chronic fatigue syndrome patients by using genetic factors, such as SNPs, and demographic factors such as age, gender and BMI.


Neuro Endocrinol Lett. 2008 Dec 29;29(6). [Epub ahead of print]

Normalization of leaky gut in chronic fatigue syndrome (CFS) is accompanied by a clinical improvement: effects of age, duration of illness and the translocation of LPS from gram-negative bacteria.
Maes M, Leunis JC.
M-Care4U Outpatient Clinics, and the Clinical Research Center for Mental Health, Belgium.
BACKGROUND: There is now evidence that an increased translocation of LPS from gram negative bacteria with subsequent gut-derived inflammation, i.e. induction of systemic inflammation and oxidative & nitrosative stress (IO&NS), is a new pathway in chronic fatigue syndrome (CFS). METHODS: The present study examines the serum concentrations of IgA and IgM to LPS of gram-negative enterobacteria, i.e. Hafnia Alvei; Pseudomonas Aeruginosa, Morganella Morganii, Pseudomonas Putida, Citrobacter Koseri, and Klebsielle Pneumoniae in CFS patients both before and after intake of natural anti-inflammatory and anti-oxidative substances (NAIOSs), such as glutamine, N-acetyl cysteine and zinc, in conjunction with a leaky gut diet during 10-14 months. We measured the above immune variables as well as the Fibromyalgia and Chronic Fatigue Syndrome Rating Scale in 41 patients with CFS before and 10-14 months after intake of NAIOSs. RESULTS: Subchronic intake of those NAIOSs significantly attenuates the initially increased IgA and IgM responses to LPS of gram negative bacteria. Up to 24 patients showed a significant clinical improvement or remission 10-14 months after intake of NAIOSs. A good clinical response is significantly predicted by attenuated IgA and IgM responses to LPS, the younger age of the patients, and a shorter duration of illness (< 5 years). DISCUSSION: The results show that normalization of the IgA and IgM responses to translocated LPS may predict clinical outcome in CFS. The results support the view that a weakened tight junction barrier with subsequent gut-derived inflammation is a novel pathway in CFS and that it is a new target for drug development in CFS. Meanwhile, CFS patients with leaky gut can be treated with specific NAIOSs and a leaky gut diet.


Mol Med. 2008 Nov 16. [Epub ahead of print]

Transcriptional Control of Complement Activation in an Exercise Model of Chronic Fatigue Syndrome.
Sorensen B, Jones JF, Vernon SD, Rajeevan MS.
Division of Viral and Rickettsial Diseases, National Center for Zoonotic, Vector-borne and Enteric Diseases, Centers for Disease Control and Prevention, Atlanta, GA, USA 30333;
Complement activation resulting in significant increase of C4a split product may be a marker of post-exertional malaise in chronic fatigue syndrome (CFS) subjects. This study was focused to identify the transcriptional control that may contribute to the increased C4a in CFS subjects post-exercise. Differential expression of genes in the classical and lectin pathways were evaluated in peripheral blood mononuclear cells (PBMCs) using quantitative reverse transcription PCR. Calibrated expression values were normalized to internal (peptidylpropyl isomerase B [PPIB]) or external (ribulose-1,5-bisphosphate carboxylase/oxygenase large subunit [rbcL]) reference genes or geometric mean (GM) of genes ribosomal protein, large, P0 (RPLP0) and phosphoglycerate kinase 1 (PGK1). All nine genes tested, except mannose-binding lectin 2 (MBL2), were expressed in PBMCs. At 1 hr post-exercise, C4, mannan-binding lectin serine protease 2 (MASP2) and ficolin 1(FCN1 ) transcripts were detected at higher levels (>/= 2-fold) in at least 50&#37; (4 out of 8) of CFS subjects that increased to 88% (7 out of 8) CFS subjects when subjects with over-expression of either C4 or MASP2 were combined. Only increase in MASP2 transcript was statistically significant [PPIB, p=0.001; GM, p=0.047; rbcL, p=0.045]). This may be due to the significant but transient down-regulation of MASP2 in control subjects (PPIB, p = 0.023; rbcL, p = 0.027). By 6 hrs post-exercise, MASP2 expression was similar in both groups. In conclusion, lectin pathway responded to exercise differentially between CFS and controls subjects. MASP2 down-regulation may act as an anti-inflammatory acute-phase response in healthy subjects, whereas its elevated level may account for increased C4a and inflammation mediated post-exertional malaise in CFS subjects.

[Eddie21]

[quote=Swiftlady;50489]I think it has a strong psychological component. I can certainly work on the physical effects and reduce them by working through my state of mind.

I have to say as an M.E sufferer I totally disagree. Unfortunately I was diagnosed age 11 when it was treated by health professionals as 'all in the mind'. As a consequense of this I saw my fair share of shrinks, and as I was so young I didnt think to question their methods. Anyway my point is I saw a therapist for about 3 years, who was a nice bloke but he couldnt make me better and had no real impact upon my health despite much positivity. Personally I feel that positive thinking and special diets are a bit of a cop out and appear mildly attention seeking. I am on an antibiotic treatment for cpn, which is pretty rough but I prefer feeling that I am tackling the issue head on. Other people should definately try it as it seems to the the only treatment with lasting success.

[Swiftlady]

I think it has a strong psychological component. I can certainly work on the physical effects and reduce them by working through my state of mind.



I have to say as an M.E sufferer I totally disagree. Unfortunately I was diagnosed age 11

Yes as I said earlier mine started same age and I too had my share of therapy. Some of which was helpful but the core message that it was all in the mind wasn't.

However I did not mean the crude approach of thinking positively as a helpful thing. Thats hopeless for ME or anything else.
If we don't clear out the root dirt throwing a pretty cloth on the floor is only a temporary fix at best, at worst useless.

By saying ME has a psychological component I meant all the work Ive done which is mental work.
Learning to manage my limits - stretching my ability just so far but NO further is a considerable mental skill.
Patience and determination.
Picking up and trying again - endlessly.
Handling dependency with dignity.

These are all part of the illness to me. But most of all learning to be acutely sensitive to tiny symptoms that signal onset of an episode. Learning WHY this is triggered, which often has emotional causes like when I take on too much responsibility.

The bug is physical. But like a great many illnesses it inflames through emotional triggers and can be controlled by emotional discipline.

Plus STRICT diet. Without my diet my body simply collapses.
And regular exercise within whatever limits I have TODAY. One day a time ion that definitely as today I can walk, swim, tomorrow I can hobble.

[Eddie21]

Im sorry, I didnt mean to offend or upset you. Im glad that you can use diet and other things to help you manage your condition. I dont know if you've heard of him but Dr Andy Wright has a theory about the illness and he is the person treating me. He's an NHS consultant who had M.E. himself and has been able to treat his condition, anyway it might be worth googling him. Best of luck in the future.

[Tammera]

I have been diagnosed with ME, and although now its very offending when people say its a non existent disease. i was very naive about it, and the first thing i said like others, when the doctor first suggested it to me, was "so your saying im imagining it" but when i got home and researched it it fell in to place. bit like my daughter when the doctor first suggested autism, like everyone else that has no experiance of it, you just see classic autism on tv and think thats it, and i said "she hasnt got autism you can tell that by looking at her" again i got home researched it and again it fell into place. people say that to me all the time, and its hard not to be offended, but i have to remember i once said exactly the same thing. another thing that gets to me is when people say, well if you have that, it cant be that bad, i knew someone that had it and they was in a wheelchair. what people dont seem to realise is, people with ME are not in wheelchairs because they are paralised, its because it hurts when they walk, their knees and ankles give and they fall, and walking makes the condition worst. i am a single parent to high functioning autistic child, im no good to my daughter in a wheel chair, when shes running in front of a bus because theres a pigeon in the road. its like the lady before said, she couldnt pick up her child, but if she had to she would have lifted a car for her child, its the same thing. when my daughter needs to go to school, needs to be fed, needs clean clothes, i have to do it i have no choice, no on else is going to do it, and then you struggle to wake up in the morning and when you do your body is so stiff it hurts and you cant get out of bed, then you get social services threatening to take your child off you almost on a daily basis because im a hypochondriac, and im lazy because i dont get out of bed on time and my daughter is always late for school, and my house is not tidy enough and i have washing in the washing basket. which in turn makes you so stressed out, it makes your condition worst. it was a year and a half of hell before i was diagnosed. the condition is still bad, but learning to pace yourself and all the stress taken away, and the medication, has helped alot.

it feels like, if you dont do the right things or scream the right words, it cant be that bad. i remember when i was pregnant, i told the midwife, im really tired, and ive passed out a couple of times, she said to me, of course your tired, your pregnant. you carry on working and wanting to die your so tired, and thats fine and normal, because your not shouting loud enough, and then when it came to my routine bloods, it was 2 weeks late because the midwife forgot to refer me to the doctor, when they took my bloods, i was so severly anaemic, i have to have double the recommended dose of iron, and if it didnt pick up by the next day, i would have been rushed in to hospital for a blood transfusion. yet because i was still going to work and doing stuff, i must have been fine, when in reality no one else was going to pay for my babies stuff, i had no choice but to carry on. then when i gave birth, i was left for 4 days because my water wouldnt break, and on the forth day, i had to beg them to take me in a break my waters, or they would have left me for 2 weeks. so i went in and i asked for a epidural, oh no they cant do that till my waters are broken, so they break my waters, now can i have one, oh no, its way to soon your not dialated enough, your only 3 cm dialated you got at least 6 or 7 hours of dialting to go and then an hour of pushing, we have loads of time, we dont want to do it to soon. an hour later my daughters on the table and i have 3 doctors stood round me trying to work out how to stitch me back together, and to add insult to injury, because i didnt scream or shout, the cheaky mare said to me, oh you must have a really high threahhold for pain. sorry i know im ranting but i wish people would be a little more understanding, we dont all act the same.

although i have been diagnosed by a consultant with ME, i still wonder about it. not that it doesnt exist, but its sometimes a generic tag, because they cant or wont dig deeper into the issue. ive read alot of stories about people diagnosed with ME, and apparently "suddenly" developed a thyroid problem, arthritus etc, when the symptoms are the same as how your feeling when your diagnosed with ME. when i ask my doctor to test me for something, she once told me, i wont be happy till im diagnosed with something that requires me taking a pill or something to make me better, and shes damn right, i tend to feel a tad resentful at someone saying you got ME, here take prozac to feel a bit better and give you a bit more energy, make sure you rest and pace yourself, theres nothing else we can do, bbye, when i have a child to look after and a house to keep on top of, resting and pacing doesnt quite cut it. if they would exhaust every possibility i would then be happy with the diagnoses.

[Tammera]

lol after all that ranting, i did actually find this forum readin up on the lightening process, i hope more people that have tried it come here and say something, its alot of money to spend if it doesnt work long term.

[Sazzer]

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[Nora Batty]

I've a friend with a bad case of ME who tried the course relatively recently. In her case it was money down the drain. It did appear to work for some others who were also having the treatment but they were not nearly as bad as my friend. She described it as a hotchpotch of every self-help and Eastern philosophy book going.

[Greenbee]

I have ME and have done the Lightning process, and I have to say its the biggest pile of dangeruos rubbish I have ever done. There are by and large 3 groups of people there, Manic Depressives, Anorexic girls, and people with high stress jobs that are still doing full time work that think they have an illness as serious as ME.

The group sessions rapidly move from what seems to be a training program into more an evengelical hallelujah you are saved kind of thing. Even those that really do have ME leave on a high of mass hysteria. I have now become aware of several people who really have had ME becoming seriously ill believing they can do more than their body really can.

It is absolutely disgraceful that a man, Phil Parker, can merely call himself some offical sounding name, become his own governing body and start claiming to treat and cure a very serious disease. In every other civilised country in the world this is a criminal offence. EVEN THE USA! The man should be behind bars. Indeed even in the UK it is a minor offence under the trades description act but those laws are never enforced.

The lightning process itself it merely to say STOP, change your body posture to the feelings you want, be it relaxed or energy (called congruance), tell your self you are a powerful genius and how great you are, then think of some memories to reinforce that.

[demisi]

Hey I just joined as I am schocked at the lack of support that ME?CFS?fibromyalgia has. There was no such thing as Lupus a few years ago until they found a diagnosis so when they find a blood test that shows the illness I wonder if you will feel any embaressment to expressing your views so easily when you haven't really got any idea about it. You've just ''googled'' it.
At age 18 I had mumps very bad and never really recovered I worked as a teachers assistant for 3 years with fibromyalgia as I wanted independance and be as normal as I could be. By the way I have had this now 4 years. The last year I was unable to work I had an awful allergic reaction to vitamin b tablets causing my skin to blister, I also had a fever do this weakened my immune system even more and I was housebound for 6 months. Gutted I was! I stayed positive but not being able to work has been a huge blow.
If the illness was in somebody's mind then how the hec do we all have the same symptoms. My rheumotologist touched certain points of my body that caused very bad bruised feelings, while other places did not. He then said that I had fibromyalgia ( I didn't know anything about it).
People who are tired and achy and use the illness as an excuse when they haven't even got it gives us ill people a bad name. I'm not tired, im not achy I have pain that feels like acid has been thrown on my legs and because I love being active and outdoors if I go for a small walk or attempt to drive my car I can't hold my knife and fork the next day to eat my food.
So I find some of your comments hurtful after and still going through hell most days and trying to keep positive is difficult when people who have no real experience state opinions in such a matter of a fact way when they have no idea.

[Pebble]

Demisi, at least google what you claim before posting nonsense!


http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=1520&zoneid=523

The term lupus (Latin for wolf) is attributed to the thirteenth century physician Rogerius who used it to describe erosive facial lesions that were reminiscent of a wolf's bite.1,3 Classical descriptions of the various dermatologic features of lupus were made by Thomas Bateman, a student of the British dermatologist Robert William, in the early nineteenth century; Cazenave, a student of the French dermatologist Laurent Biett, in the mid-nineteenth century; and Moriz Kaposi (born Moriz Kohn), student and son-in-law of the Austrian dermatologist Ferdinand von Hebra, in the late nineteenth century. The lesions now referred to as discoid lupus were described in 1833 by Cazenave under the term "erythema centrifugum," while the butterfly distribution of the facial rash was noted by von Hebra in 1846. The first published illustrations of lupus erythematosus were included in von Hebra's text, Atlas of Skin Diseases, published in 1856.

[Ryoden]

I saw a friend last week and it appears that she went in for this "Lightning therapy" last year as she suffers from ME.

It cost her £550 (reduced from £660 - wow bonus;))

She showed me the documentation despite the fact that she wasnt supposed to tell anyone as its a big secret apparently, every sheet had "not to be reproduced, copied, etc anywhere else under pain of death" (ok the last bit wasnt on there - dont want to get sued for libel:-X)

To my mind what i read was just self confidence building, for instance you had to stop and speak to yourself when you felt bad, and give yourself a positive pep talk. While I didnt read through it 100% this seemed to be the main thrust of the course material so it appears that you are paying £500-£600 for something you could easily get from the NHS or any self help book (which would cost a lot less).

I asked her if the course came with any guarentees considering the cost but she said that it was mentioned that if it didnt work then it was your own fault and not the responsibility of the person who gives the course, so no surprise there then.

She said it didnt work anyway.

While that sort of confidence building may well be useful for some people I dont see the necessity of paying a considerable amount of money for something that can be obtained either free or £10 from most bookshops.

[Matt]

It cost her £550 (reduced from £660 - wow bonus;))

How did you make that typo? The N key isn't anywhare near the G...

[Ryoden]

How did you make that typo? The N key isn't anywhare near the G...

:tongue:

[James MacHeath]

ME/CFS is a trivial disease.

Those who say they have it can't prove it. They say they feel ill, that they have pains in the body, aching muscles, exhaustion, headaches, they wake up sweating and they can't sleep properly. They spend most of their time resting, avoiding activity. If they are doing it to get drugs or treatment or sympathy or attention then they are out of luck because they won't get any.

They stop work and give up their hobbies. Their world shrinks rapidly. They struggle on until their money runs out, surrounded by the detritus of their former lives. Either they give up their houses and worldly goods or they are seized in payment for their mounting debts. Usually their spouses leave them - if they stay then their lives are ruined too. If they're lucky they have somebody who will take them in.

Some make a nuisance of themselves for a while, constantly seeking treatment and taking various pills in the hope that they might feel better. After a while they stop trying. They get the message: nobody cares. After that they're little trouble to the system. Statistically, there's hardly any chance that they'll get better. There's an increased chance of dying of heart disease or cancer because they're unlikely to get a diagnosis early enough.

However the good news is that ME/CFS itself is not usually fatal. The bad news is the same as the good news.

[chaggle]

ME/CFS is a trivial disease.

Those who say they have it can't prove it. They say they feel ill, that they have pains in the body, aching muscles, exhaustion, headaches, they wake up sweating and they can't sleep properly. They spend most of their time resting, avoiding activity. If they are doing it to get drugs or treatment or sympathy or attention then they are out of luck because they won't get any.

They stop work and give up their hobbies. Their world shrinks rapidly. They struggle on until their money runs out, surrounded by the detritus of their former lives. Either they give up their houses and worldly goods or they are seized in payment for their mounting debts. Usually their spouses leave them - if they stay then their lives are ruined too. If they're lucky they have somebody who will take them in.

Some make a nuisance of themselves for a while, constantly seeking treatment and taking various pills in the hope that they might feel better. After a while they stop trying. They get the message: nobody cares. After that they're little trouble to the system. Statistically, there's hardly any chance that they'll get better. There's an increased chance of dying of heart disease or cancer because they're unlikely to get a diagnosis early enough.

However the good news is that ME/CFS itself is not usually fatal. The bad news is the same as the good news.


Hello James

The way you've described it? It doesn't sound trivial to me!

[Warren]

In case anyone's interested, just this year a paper's been published which shows a fairly solid biological basis for symptoms:

Chronic fatigue syndrome and mitochondrial dysfunction

www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2680051

They looked at how the mitochondria (the energy furnaces in each cell in the body) produce energy in CFS patients vs controls, and find many sufferers are only producing/recycling 20&#37; the energy of a normal, sedentary individual. Essentially the same phenomenon as cardiomyopathy, only affecting every cell, rather than localised to cardiac cells. Typically higher disability rates than heart failure, renal failure and many stages of MS. Certainly a severe illness - (although "syndrome" probably describes it better than "disease".)

On the same note, this would make me somewhat sketpical of treatments like Lightning Therapy, as these results imply a clear cell-level problem. But having known so many people who've suffered with this condition, I do think this country's a little hung up on blaming anything difficult to identify as "psychological".

[bindeweede]

In case anyone's interested, just this year a paper's been published which shows a fairly solid biological basis for symptoms:



I'm interested Warren, and thanks for that post. A friend of mine has had CFS for over 2 years now. Fortunately her GP has been supportive, rather than just dismissing it as "yuppy flu'" or purely psychological.

[Warren]

I'm interested Warren, and thanks for that post. A friend of mine has had CFS for over 2 years now. Fortunately her GP has been supportive, rather than just dismissing it as "yuppy flu'" or purely psychological.

My pleasure :smiley:

I seem to have known so many who've been affected by it. My brother had a severe case for about 7 years, then got better quite rapidly after having B12 injections. Someone I grew up with had a less severe case in school but has never really returned to 100% - one of the brightest people I know, yet he's stuck doing night shifts in a minimum wage job. And another family friend who's been practically bed bound for about 20 years after getting some VERY bad advice from the GP: "Keep going, there's nothing wrong with you."

I think a lot of CFS people do act in a fairly distinctive way. They're constantly being told "Well there's nothing whatsoever wrong with your blood tests," by their GPs - (admittedly these blood tests tend only to look at a few general things, like liver and kidney function; blood sugar; blood cell count) - on top of which it seems to largely affect Type A personalities: people who possibly have a reduced perception of effort, which is why they push themselves and again the contrary to what doctors have been telling them.

So you take overachievers who suddenly find themselves unable to take a shower without feeling wiped out, and a system which is constantly telling them they're fine, and you can see how some would get quite obsessive trying to keep themselves convinced they're not suffering from a psychological problem!

I'd exercise healthy skepticism when it comes to things like the Lightening Process, and anything which claims to produce fast results - at least until there's some large-scale, independent, double-blind studies - as if a patient were suffering from mitochondrial failure, the fatigue's actually what's keeping them from going into organ failure. But then I wouldn't rule out psychological approaches being an important part of recovery either, as there does seem to be a strong correlation with overachievers; possibly people who can't relax until they've pushed themselves into fatigue?

[Pebble]

I should have thought generalised mitochondrial dysfunction was fairly easy to prove or disprove, all that is necessary is to force exercise for a short period and observe the resultant lactic acidosis. Why the disconnect between these findings and what should logically follow?

[wombot]

Hello everyone - this is my first post. :wavey:
I agree with swiftlady, that it can be just papering over the cracks. I did it a couple of years ago and it really worked - I was about 98% well after i did the course. Unfortunately LP is very hard to maintain with no support, and after a few months my energy started to dip again. However, I'm still alot better than before I did it. It just has ALOT of faults. There are many things about it which arwe extremely irresponsible.
Their theory is that an original stressor/virus causes a loop of stress-chemicals to be produced, which then just carry on, making you ill. So even if the virus is gone, the stress chemicals remain. So they teach you how to reduce these stress chemicals basically using an uber-CBT approach.
HOWEVER although this definately works in some people - I think it must be for the people who have def got over the original stressor completely. in my case, there are various things keeping me stressed - and its very hard to 'stop' getting stressed by them. LP basically says you must say STOP to all negative thoughts, emotions and symptoms. Well, this works for a weeks or so, which is fine to get alot of people out of the vicious cycle of stress chemicals. Howvwer, for other poeple, life is more complicated than that. I mean, how exactly do you 'stop negative emotions ' in the long-term? Buddhist monks dedicate their whole lives to happiness and peace (amongst other things), and they arent perfect at it.
Life happens.
I was on a 'high' afterwards, and I think thats how it works. But 'highs' dont last. Not completely.

[sleepyhead]

Hi I notice this thread was last used in 2009

But if you're still around wombat. I wanted to thank you for a really helpful message.

I'm a Chronic fatigue/ fibromyalgia / IBS sufferer who is searching for information about what the lightening process actually is. A friend of mine has just gone on it and is full of energy.
I want that energy,
but haven't worked since 2006. I can't get any benefits because I'm married ( well I get enough to provide me with a whole 80 quid a month ) LP a asking for a lot of money. Its a lot of money to find when you don't have enough money for the basics of life....yet not that much compared with other private treatments ....if it works.

Science now is has proved mitochondrial disfunction and seen inflammatory changes in the white brain matter. Spinal fluid has proven ME/CFS body's are fighting off something. Its looking more and more like the sort of virus that attacks and then lies dormant. The attacks for me can be like flu or food poisoning. Recovery from each attack is frustrating to say the least.
The lightening Process is hinting at something that can reverse all this over just 3 days.
Surely I'd have to be mad to accept that.
And yet if it could work.....I really long to be well again. Do I dare to hope its possible after 10 years of this.....a 3 day cure hmmmmmmmmmmmm

And yet my friend is doing so well

sleepyhead........ is now going to sleep

[Pebble]

Hi I notice this thread was last used in 2009

But if you're still around wombat. I wanted to thank you for a really helpful message.

I'm a Chronic fatigue/ fibromyalgia / IBS sufferer who is searching for information about what the lightening process actually is. A friend of mine has just gone on it and is full of energy.
I want that energy,
but haven't worked since 2006. I can't get any benefits because I'm married ( well I get enough to provide me with a whole 80 quid a month ) LP a asking for a lot of money. Its a lot of money to find when you don't have enough money for the basics of life....yet not that much compared with other private treatments ....if it works.

Science now is has proved mitochondrial disfunction and seen inflammatory changes in the white brain matter.

The lightening Process is hinting at something that can reverse all this over just 3 days.
Surely I'd have to be mad to accept that.
And yet if it could work.....I really long to be well again. Do I dare to hope its possible after 10 years of this.....a 3 day cure hmmmmmmmmmmmm

And yet my friend is doing so well

sleepyhead........ is now going to sleep


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/

I would not go so far as to say mitochondrial dysfunction has been proven. In some studies this has been observed in others not. For example the 2009 paper above is flawed. The normals were not done as contemperanous controls, there was no blinding of the investigators etc. Further a year on this has not been replicated by independent observers. So interesting but the jury remains out.

Lightining process is bogus don't waste your money.

Delighted for your friend, but anecdotes are not evidence - regression to the mean etc.

[sleepyhead]

http://www.masscfids.org/videofiles/Komaroff/Komaroff.html
is where I've got my lastest info from. It takes me a long time to process info but keeps my grey matter going even if the white matter is dodgy.
Thanks for the reply. I think I might try a trusted homeopath instead of LP. Still costs but this guy was very good with my daughters asthma.
Sleepyhead

[Pebble]

is where I've got my lastest info from. It takes me a long time to process info but keeps my grey matter going even if the white matter is dodgy.
Thanks for the reply. I think I might try a trusted homeopath instead of LP. Still costs but this guy was very good with my daughters asthma.
Sleepyhead

A presentation to a audience of patients requires creation of a cogent story line, with no real room for the level of controversy that exists in the literature. I am not disagreeing with his hypothesis, simply observing that it is one of a number that may eventually gain widespread acceptance.
As I understand his thesis it is simply that CFS is a form of chronic postviral or persistent viremia induced fatigue induced via immune mediated reduction in cellular energy production. However his reliance on single small studies that support his contention, ignoring other data would not get him a Nobel prize.

Why would you think homeopathy has any support here?

[tolman]

I think it'd be fairly safe to say that if a simple process did reliably give rapid, complete and permanent recovery from long-term debilitating conditions, that it would be likely to become widely known very quickly, and attract the attention of the general medical profession, not to mention medical insurance companies and governments who fund medical treatment.

That is, if such a process really existed, it would seem like the time between first hearing about it from the odd person and being unable to avoid hearing about it from everyone would be so short that there'd be little or nothing to be lost by waiting.

[sleepyhead]

However his reliance on single small studies that support his contention, ignoring other data would not get him a Nobel prize.

Why would you think homeopathy has any support here?

Thanks for your interest Pebble. I agree with your comments but that unfortunately seems to be how research into this condition is being done. Nothing is concrete because of it.

Homeopathy is something that helped my daughter. I have taken her to a few homeopaths but one in particular really did help her. She was too young for the improvement to faked.
He doesn't pretend a cure but has had some success in the improvement of symptoms in ME/CFS patients.

AS a sufferer I think clutching at straws is the best I can hope for.

I have heard that the NHS are talking about a trial to use the Lightening Process on children. I would be interested in seeing the results of that.
I have found a course by 'Gupter' on the internet which is apparently similar to the lightening process. Some of the course is free so I might have a look at that for now.
Maybe you're right Tolman. Maybe waiting a while WOULD be a good idea.

IDDM

[brianp]

I have heard that the NHS are talking about a trial to use the Lightening Process on children.

http://niceguidelines.files.wordpress.com/2010/03/rct-on-lp-march-2.pdf

"£164,000 awarded for new research into the treatment of a chronic
childhood condition"
...
"The team will carry out a pilot project to investigate how to recruit to a randomised
controlled trial looking at the Phil Parker Lightning Process® and specialist medical
care. This will be the first study of its kind in this area, and the team hopes to
establish a basis for a larger scale multicentre research project."

[Drop Bear]

Homeopathy is something that helped my daughter. ReallY? WOW!


I guess there's a first time for everything.


How can I put this delicately? Homeopathy is woo,nonsense, a scam, a confidence trick, quackery of the first water,rubbish,idiocy, non-medicine:It doesn't bleedin' well work!

There is no evidence to support the efficacy of homeopathy. NONE.

I'm aware of the studies of experimenst with allergies used as evidence by homeopaths and their loopy supporters,including that intellectual giant and pillock of the establishment,HRH Charles,Prince Of Wales. The results have never been replicated.

The most important criterium for any medical treatment is that it works for the majority of people most of the time. There is no evidence that is the case with any homeopathic treatment.

I don't doubt your daugther got better. I do question the claim it was due to homeopathy. Personal anecdotes and tesimonials are not accepted as scientific evidence.

For credible claims of a cure of your daughter's condition via homeopathy vs placebo,there woudl need to be independently published evidence of succesful treatment of a large number of others with the same condition.As far as I'm aware there is no such evidence of any homeopathic treatment working.

Sorry,wrong forum to try to promote or defend the dangerous drivel which is homeopathy. People die all the time due to using homeopathy rather than medicine.

[sleepyhead]

ReallY? WOW!


I guess there's a first time for everything.


How can I put this delicately? Homeopathy is woo,nonsense, a scam, a confidence trick, quackery of the first water,rubbish,idiocy, non-medicine:It doesn't bleedin' well work!

There is no evidence to support the efficacy of homeopathy. NONE.

.

Ok.
Its ok that some don't accept this form of medicine. Many don't accept the existance of ME/CFS. I thnk I was lucky to find an exceptional homeopathic practitioner. He was also a medical doctor so traditional and alternative understanding was there. For me thats important.
I moved house away from this practitioner and to be honest haven't found anyone I would consider of similar effectiveness.

I was desperate with my daughter. She was covered from head to toe with eczema and traditional medicine was making her worse. She was on three different inhalers for asthma and couldn't run across a car park with me to find a parking ticket from the machine.
With this treatment, which involved vega testing and bio resonance (no I don't know how that works) she was able to come off the inhalers completely. We could pin point what foods and allergens were affecting her, and she could be given medication that was effective but could be changed when the allergens affecting her changed. We could alter what foods she had and find out which were safe.

Traditional medicine can be very black and white.

My son also had a severe allergic reaction to insect bites which was aggravated by the creams available. Traditional medicine gave him steroid tablets and told him not to play outside and never to go camping!. They were talking about Epi pens, but that wasn't necessary because...this practitioner took away the allergic response. My son only needed one course of treatment.

I'm not a hippy crank looking for an alternative way to live. I trained as a nurse. I needed an effective way to allow my children a normal life though. This was effective.
When we moved away my daughter did struggle for a while. She was older by then though and I think her own body responses were stronger. We looked at other homeopaths but they didn't have the little machine to test. They weren't half as good.

Maybe Drop Bear you haven't found yourself in a position where traditional medicine doesn't work?
I wonder what you would do if you did? ::)

I'm quite excited about this NHS testing of the Lightening Process. If they have positive responses maybe it will be available for adults too. It all takes time.

I haven't been back to that practitioner for my condition. Travelling is exhausting but I am considering it

[brianp]

Ok.
Its ok that some don't accept this form of medicine.

But that's the point, homeopathy is NOT a form of medicine, it's a form of magic. The supposed medication is nothing but pure water which might well alleviate thirst, but can do no more. We can say with absolute confidence that, apart from possible placebo effects, homeopathy does not work and cannot work because there is literally nothing to it.

Vega testing and bio resonance!!!! Surely you are kidding. They are utter hogwash - this is woo of the highest order. If you give one second's credence to such absurdities then you really are on the wrong forum.

You say you are not a crank - yet you subject your children to untested, unscientific treatments. Clearly your definition of "crank" isn't the same as mine.

What would I do if I had a condition which "traditional medicine" - I think you mean "real medicine" - couldn't help? Well if I'd thoroughly explored all the many avenues open to me through the NHS - second GP opinion, referral to a different consultant etc - I might look around for help from the private sector, and I mean real doctors of course. If all that failed then my next step would depend on the nature of the condition - basically it would be: alleviate the symptoms if possible and live with it. One thing is certain, my actions would not involve witch doctors or their 21st century successors.

[sleepyhead]

:cheesy: ok

[Pebble]

Ok.


I was desperate with my daughter. She was covered from head to toe with eczema and traditional medicine was making her worse. She was on three different inhalers for asthma and couldn't run across a car park with me to find a parking ticket from the machine.


Traditional medicine can be very black and white.

My son also had a severe allergic reaction to insect bites which was aggravated by the creams available. Traditional medicine gave him steroid tablets and told him not to play outside and never to go camping!. They were talking about Epi pens, but that wasn't necessary because...this practitioner took away the allergic response. My son only needed one course of treatment.


First childhood eczema and asthma do tend to improve with age, so if you go from practitioner sooner or later one of these will be credited with success.

'Traditional' medicine has it's fair share of ill informed individuals, whose incompetence plays into the hands of charlatons. The medicine itself is certainly not 'black and white', but does demand a minimum standard of evidence before treating children as guinea pigs.

A single? allergic reaction leading to such advice! That sounds like incompetence to me. Without seeing an allergy specialist (even if there were multiple episodes) such advice should be treated with the contempt it deserves. The stupiditiy of some clinicians is not evidence if favour of quackery.

[Croydon Bob]

:cheesy: ok

Idiot. If you don't even know that homeopathic "medicine" is just water then don't try to engage with people who aren't as thick as you.

Oh, and I have some magic crystals that will cure your daughter. £5 each. ;D

[Drop Bear]

@Croydon Bob

You win one internet for the pithiest response.


Two more and you qualify for admission to The Order Of The Golden Bilby.O0

[sleepyhead]

Ok I'm beginning to see that some here seem to enjoy stepping on people. Thats ok.

I'm not sure how scientific it is to start calling people idiot and stupid just because they have a different opinion to you.

My daughter is better now and yes the condition did improve with age. She grew out of most symptoms.
My point is that at the time when she was at her worst traditional orthodox medicine made her worse.
As a mother I had to do something.
When you find yourself in that situation maybe you will understand more.
Its ok that your life has not yet experienced a need for an alternative in order to help someone you love. You're very lucky.

I realise this is a skeptics site but putting others experiences down is not skeptisism its ignorance.
Again thats ok. I don't mind. Not offended in the least. What ever rocks your boat. lol

I did try some homeopaths who did nothing for us.
But don't dismiss all because some are bogus.
I found a practitioner that did a lot of obvious and immediate good at the time.

Just because you haven't found out why yet doesn't mean it belongs in la la land.
Look back over this thread. In 2006 no one had anything positive to say about ME/CFS
Now in 2010 it can be discussed because knowledge has moved on.
There are many people suffering from invisable and untreatable conditions because science hasn't caught up yet. Many children are struggling with symptoms that doctors can do nothing about. How do you expect parents to react to that.

I am well within my rights not to join in if I am feeling the thread is becoming needlessly negative or ridiculing. Thats my choice.
sleepyhead

[Drop Bear]

I'm not sure how scientific it is to start calling people idiot and stupid just because they have a different opinion to you. That was not my perception.

It seemed to me Bob was not making an ad hominem attack,but accurately describing your ignorant and rather stupid position.

I don't know you,so have no idea if you are a clinical idiot.I doubt it. However, I think it's fair to describe your defence of the quackery of homeopathy on a skeptics' forum as idiotic-- especially when it's obvious you have little understanding of the basis of the claims for homeopathy.

Sorry,really can't be bothered with you any more.You may not be an idiot,but you do seem to be a willfully ignorant fool.

[Pebble]

Just because you haven't found out why yet doesn't mean it belongs in la la land.
Look back over this thread. In 2006 no one had anything positive to say about ME/CFS
Now in 2010 it can be discussed because knowledge has moved on.
There are many people suffering from invisable and untreatable conditions because science hasn't caught up yet. Many children are struggling with symptoms that doctors can do nothing about. How do you expect parents to react to that.



I appreciate some here get fed up with non evidence based assertions and do not put forward thoughtful responses.

You argue that people were negative in respect of CFS 4 years ago and are less negative now. That is what the evidence shows at each time point. Changing position as the evidence requires is exactly what skepticism is all about.

On cannot however generalise from CFS to homeopathy. In CFS '2006' we had groups of individuals that were ill defined, certainly containing many individuals with depression, eating disorders etc. Thus studies tended to show no consistent patterns - ie no evidence that a distinct syndrome existed. With better definition and standardisation of the precise group of patients, studies have begun to show some interesting reproducible abnormalities. I am not sure one could go any further than that at this stage. To be sure visionaries and believers got us from there to here, but only with the help of skeptics to point out where the evidence was too weak to convince.

Homeopathy unlike CFS has been around as a distinct entity for a couple of hundred years. It has been very extensively studied, in the laboratory, in animal studies, in open label studies and in very many double blind trials. After all this effort what can one say - well if you believe; that water may have memory of the chosen molecules (but pure water is not pure! it has more contaminants than residual molecules of interest); that like treats like (despite overwhelming evidence now that this is not so); that some properly constructed DBRCTs and a shed load of poorly designed trials suggest benefit (we now know precisely why poorly constructed trials always favour the investigators desired results, and statistically some properly constructed trials must be positive whatever the inefficacy of your agent).
So this is a very different situation - here we have very good reasons for accepting that homeopathy is bogus. No one is here to deny you your beliefs, but it is offensive to use anecdotes in support magic on a skeptics forum - that is what leads to negativity.
If you wish to discuss something that has no useful evidence base on a skeptics forum, all that is asked is that the most basic fallacies are avoided when making the case for your chosen remedy.

[tolman]

There is a difference between 'being apparently successfully treated by a homeopath' and 'being apparently successfully treated by homeopathy'.

If the person concerned is also giving advice on diet, etc, any results aren't necessarily anything to do with homeopathy.

Likewise, if some foods are part of the problem, if the person is [apparently] using an [apparently] wacky process to work out foods to avoid, etc, it doesn't mean that they can't end up with useful results even if the process itself doesn't work - they could try things until they get lucky, or could be choosing things based on general experience rather than the method.

[Pebble]

There is a difference between 'being apparently successfully treated by a homeopath' and 'being apparently successfully treated by homeopathy'.

If the person concerned is also giving advice on diet, etc, any results aren't necessarily anything to do with homeopathy.

Likewise, if some foods are part of the problem, if the person is [apparently] using an [apparently] wacky process to work out foods to avoid, etc, it doesn't mean that they can't end up with useful results even if the process itself doesn't work - they could try things until they get lucky, or could be choosing things based on general experience rather than the method.

That is undoubtedly part of what goes on but there is so much more. There certainly is the caring effect - if you get someones trust they will see improvement where there is none. There is regression to the mean - if someone is at a low point when you first encounter them they will almost always improve. There is the natural hisotry of conditions, that relapse and remits unpredictably and can easily be interpreted as benefit. Put these together with a conditon like childhood eczema, anyone who can hold your faith for a few years while trying different apparent remedies will undoubtedly be canonised as a life saver for ever more.
Insect allergies are even more interesting, since in a given year some one may exhibit a more dramatic response than in other years, so advice, well intended. to be extra cautious, can be shown to be nonsense in most instances. The natural history is for most to do well longterm, there are a few nasty exceptions who following the more lax advice end up dead - but who is reporting these?

[arison]

I have to laugh when ignorants quote "some people say they have ME just so they can claim benefits"

Had you ever been ill and claimed benefits then you would know how demoralising it is not only to claim benefits, but to live in poverty and not have a job like every other "normal" person.

XMRV/MLV Whittemore Peterson - please research these.

The reason people try these half cocked therapies is because hardly any scientific research into ME has taken place and so people are nothing but desperate to get better! ME first occurred in the 1950's and still, over fifty years later people are still facing ignorant jibs about being work dodgers.

ME is a multi system, neurological illness that has similar symptoms to MS.

I would like how some of you would cope with an physical illness that merits hardly any research and is treated with Cognitive Behavioural therapy with patients being left to fend for themselves!

[Croydon Bob]

ME is a multi system, neurological illness that has similar symptoms to MS.

Actually the latest thinking is that it is caused by a virus. Like many other illnesses. It just took a stupid length of time to find the virus, mainly because most people weren't looking for it.

I'm not sure who you are having a go at in your post. Most of the people on this forum would broadly agree with you. But this thread attracted a particularly large number of trolls posting bollocks.

[tolman]

I have to laugh when ignorants quote "some people say they have ME just so they can claim benefits"

Had you ever been ill and claimed benefits then you would know how demoralising it is not only to claim benefits, but to live in poverty and not have a job like every other "normal" person.
There is a quite difference between saying "some people say they have ME..." and saying "everyone saying they have ME is making it up or imagining it".
A great deal comes down to the context in which it is said.

A person may say "some people say they have cancer in order to get sympathy" or "some people say they have back pain in order to skive off work" but that doesn't imply that the person saying it necessarily doesn't believe that cancer or back pain actually exist.

[Pebble]

The reason people try these half cocked therapies is because hardly any scientific research into ME has taken place and so people are nothing but desperate to get better!


If you search under myalgic encephalopathy, you will find little research, since the accepted term is CFS (chronic fatigue syndrome) with over 4000 publications - research advances have been mainly hampered by indadequate definition of the syndrome under investigation, really only in the last decade or so has there been any agreement on the precise subgroup that was likely to have a single or small number of pathological causes.

As for MS - fatigue, depression and anxiety are indeed very important contributors to the symptom burden in this condition, it is however, very distinct because of the specific neurological lesions that in most cases lead to symptoms and findings that are readily distinguished from ME/CFS.

[Admin]

I have to laugh when ignorants quote "some people say they have ME just so they can claim benefits"

Had you ever been ill and claimed benefits then you would know how demoralising it is not only to claim benefits, but to live in poverty and not have a job like every other "normal" person.

XMRV/MLV Whittemore Peterson - please research these.

The reason people try these half cocked therapies is because hardly any scientific research into ME has taken place and so people are nothing but desperate to get better! ME first occurred in the 1950's and still, over fifty years later people are still facing ignorant jibs about being work dodgers.

ME is a multi system, neurological illness that has similar symptoms to MS.

I would like how some of you would cope with an physical illness that merits hardly any research and is treated with Cognitive Behavioural therapy with patients being left to fend for themselves!

Do you know what the problem with a posting like yours is?

You sound like an example of the sort of CFS sufferer you seem to think doesn't exist!

Honestly, if you want to be taken seriously, a change of attitude might help. After a quick re-read of the thread it seems to me that most of us on here have taken this topic seriously and treated it fairly and honestly.

I can't see the need for, or understand the purpose of, your outburst.

[arison]

ME/CFS is a trivial disease.

Those who say they have it can't prove it. They say they feel ill, that they have pains in the body, aching muscles, exhaustion, headaches, they wake up sweating and they can't sleep properly. They spend most of their time resting, avoiding activity. If they are doing it to get drugs or treatment or sympathy or attention then they are out of luck because they won't get any.

They stop work and give up their hobbies. Their world shrinks rapidly. They struggle on until their money runs out, surrounded by the detritus of their former lives. Either they give up their houses and worldly goods or they are seized in payment for their mounting debts. Usually their spouses leave them - if they stay then their lives are ruined too. If they're lucky they have somebody who will take them in.

Some make a nuisance of themselves for a while, constantly seeking treatment and taking various pills in the hope that they might feel better. After a while they stop trying. They get the message: nobody cares. After that they're little trouble to the system. Statistically, there's hardly any chance that they'll get better. There's an increased chance of dying of heart disease or cancer because they're unlikely to get a diagnosis early enough.

However the good news is that ME/CFS itself is not usually fatal. The bad news is the same as the good news.



What a silly man you are. Google Sophia Mirza or read the website Sophia and ME.

It amazes me people remain so ignorant in this day and age with all the resources we have. Ignorant or stupid - I'm not sure which, but then I probably don't have an opinion because I have ME therefore I am a nothing.

[arison]

Actually the latest thinking is that it is caused by a virus. Like many other illnesses. It just took a stupid length of time to find the virus, mainly because most people weren't looking for it.

I'm not sure who you are having a go at in your post. Most of the people on this forum would broadly agree with you. But this thread attracted a particularly large number of trolls posting bollocks.


Having a go at the trolls posting bollocks.

It may be caused by a virus, but until that's proven, and I don't think we are far from that - the classification with the WHO remains the same.

[arison]

Do you know what the problem with a posting like yours is?

You sound like an example of the sort of CFS sufferer you seem to think doesn't exist!

Honestly, if you want to be taken seriously, a change of attitude might help. After a quick re-read of the thread it seems to me that most of us on here have taken this topic seriously and treated it fairly and honestly.

I can't see the need for, or understand the purpose of, your outburst.


I read the thread from the beginning.

I've no idea what the rest of your post is getting at? You'll have to explain it to me.

[arison]

If you search under myalgic encephalopathy, you will find little research, since the accepted term is CFS (chronic fatigue syndrome) with over 4000 publications - research advances have been mainly hampered by indadequate definition of the syndrome under investigation, really only in the last decade or so has there been any agreement on the precise subgroup that was likely to have a single or small number of pathological causes.

As for MS - fatigue, depression and anxiety are indeed very important contributors to the symptom burden in this condition, it is however, very distinct because of the specific neurological lesions that in most cases lead to symptoms and findings that are readily distinguished from ME/CFS.

There is really no need to educate me. Ever ME sufferer who is able, is an expert on ME.

Fatigue depression and anxiety are a few of the symptoms for both conditions, and they are the least debilitating ones. Some ME patients have lesions on their brains.

The difference between MS and ME is the nerve ending damage is permanent in MS.

[arison]

There is a quite difference between saying "some people say they have ME..." and saying "everyone saying they have ME is making it up or imagining it".
A great deal comes down to the context in which it is said.

A person may say "some people say they have cancer in order to get sympathy" or "some people say they have back pain in order to skive off work" but that doesn't imply that the person saying it necessarily doesn't believe that cancer or back pain actually exist.

It was a general quote.

My point is - in the real world, I can't imagine anyone would feign illness to get benefits because in truth it's a degrading process, you receive little help and I sincerely do not understand how a genuinely sick person is expected to manage on such little money.

[arison]

If you search under myalgic encephalopathy, you will find little research, since the accepted term is CFS (chronic fatigue syndrome) with over 4000 publications - research advances have been mainly hampered by indadequate definition of the syndrome under investigation, really only in the last decade or so has there been any agreement on the precise subgroup that was likely to have a single or small number of pathological causes.
.

Which ever term you prefer to use, ME, CFS, Lyme, PVF - there has not been enough good research. In the last ten years the DOH has allocated a minimum of £8.5million to be used in ME services. You would expect the majority of that money to go to research right? Wrong. It went into opening local NHS CFS services to offer people suffering with ME/CFS whatever you chose to call it - Cognitive Behavioural therapy, if you were lucky. Most got a six week course on how to manage the disease. No drugs, no private therapy to deal with the devastating effects of dealing with a chronic illness, and no alternative therapies that have proven beneficial to deal with the symptoms of this disease.

Really you should be discussing why, on the advice of Simon Wessley who ignores biomedical research and believes ME to be in the mind, people are being left in poverty with little support.

People DO die from ME, they also die from Cancer and other opportune diseases because they are not offered any treatment to support low immunity.

[Pebble]

There is really no need to educate me. Ever ME sufferer who is able, is an expert on ME.

Fatigue depression and anxiety are a few of the symptoms for both conditions, and they are the least debilitating ones. Some ME patients have lesions on their brains.

The difference between MS and ME is the nerve ending damage is permanent in MS.

As an expert then perhaps you would care to educate me on the 'nerve ending' damage associated with demyelinating conditions? Hint - the myelin sheath only covers the axons, so any nerve ending damage is entirely consequential.

http://brain.oxfordjournals.org/content/120/3/393.long

[Pebble]

People DO die from ME, they also die from Cancer and other opportune diseases because they are not offered any treatment to support low immunity.

The road from symptoms through to treatment is a very long one. First being able to isolate the disease group of interest, then fully understanding the natural history of the right group, then (or in parrallel) understanding fully the protean manifestations, then the pathophysiology, developing adequate animal models, establishing reasonable therapeutic targets, initial pilot studies, proof of concept studies and then definitive DBRCTs to demonstrate efficacy. As a sufferer patience may not seem such a virtue, but years of bogus claims have convinced those who pay for the therapies that extreme caution is the order of the day, until the above hurdles have been overcome.