Lightning Process??!!!

[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/weba...520&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)

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...

[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

http://www.pubmedcentral.nih.gov/art...?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% 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

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.
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.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