Article: Treatment the UK way - the ME Association's ME/CFS Treatment Survey

You can view the page at http://www.forums.aboutmecfs.org/content.php?255-Treatment-the-UK-way-the-ME-Associations-ME-CFS-Treatment-Survey

 

Thanks Cort, interesting analysis. Have there been similar patient surveys done in the U.S.? I'd be interested to read ... thanks!

 

Dire, it's just dire... where's the proper medical treatment? Argh...

I think the Lightning Process responses really make the oddities of this survey stand out. If people are "greatly improved", what are they doing on the MEA's website rather than out and about living their new, healthy lives?

I think that what constitues "great improvement" in ME/CFS would be considered trivial improvement in other conditions because after years of illness our expectations are so low; and I suspect that people subjected to the LP have it drummed into them to think positively and "big up" their improvement, including in their own eyes.

And of course, the people taking part in the survey may have been misdiagnosed due to the very wide UK CFS criteria so who knows how this sample is composed.

I find it difficult to attach much value to this sort of survey. Big numbers don't make for an accurate survey, and I think that online surveys are particularly prone to biases and other methodological problems.

I'm starting to sound a bit grumpy, I think I'll go and have some chocolate!

 

How is it possible to assess a treatment (not cure) with people in various stages of illness - what good GET when ill in bed unable to move, what good CBT when hardly unable to recall one's name, what good anything else when unable to make the bathroom, what good when one has passed out a few times or sunk into a black hole or live in a half world. That recognition is all that is wrong in the UK.

 

Thanks Cort, interesting analysis. Have there been similar patient surveys done in the U.S.? I'd be interested to read ... thanks!

I don't know but Phoenix Rising is (slowly) getting its online treatment review program together - much more comprehensive and detailed.

 

Dire, it's just dire... where's the proper medical treatment? Argh...

I think the Lightning Process responses really make the oddities of this survey stand out. If people are "greatly improved", what are they doing on the MEA's website rather than out and about living their new, healthy lives?

I think that what constitues "great improvement" in ME/CFS would be considered trivial improvement in other conditions because after years of illness our expectations are so low; and I suspect that people subjected to the LP have it drummed into them to think positively and "big up" their improvement, including in their own eyes.

And of course, the people taking part in the survey may have been misdiagnosed due to the very wide UK CFS criteria so who knows how this sample is composed.

I find it difficult to attach much value to this sort of survey. Big numbers don't make for an accurate survey, and I think that online surveys are particularly prone to biases and other methodological problems.

I'm starting to sound a bit grumpy, I think I'll go and have some chocolate!

It is hard to tell what 'greatly improved' meant exactly - it would have been better to get a functional scale up there but the broad message of the survey seemed accurate; not alot of people become greatly improved and many people find some improvement (and many find none).

I think the LP rating was probably right on; we've heard of some people improving greatly and many others not - that's what that finding reflected. Note as well that there is a filter in LP - and only certain types of people with ME/CFS will be attracted to it or met its specifications. I don't know if you can believe yourself into great improvement - that would fine with me, actually.

Still improvement is a tricky question....the biggest question for me would be if anyone can exercise regularly and work full time - that would have been a fascinating question to ask all of the 'greatly improved' groups.

 

Great stuff Cort - it seems we patient experts have to help.

 

How is it possible to assess a treatment (not cure) with people in various stages of illness - what good GET when ill in bed unable to move, what good CBT when hardly unable to recall one's name, what good anything else when unable to make the bathroom, what good when one has passed out a few times or sunk into a black hole or live in a half world. That recognition is all that is wrong in the UK.

Well, neither of those therapies did very well; CBT was in the very bottom in terms of effectiveness and GET not only was largely ineffective but had high rates of getting worse as well and alot of people had tried them; almost a quarter of the respondents had tried at least one of them. I imagine the rates of either in the US would be really very low.

Of course, in the US those types of treatments may be different as well - we're not for the push through your symptoms type of exercise program here that seems or seemed to be common in the UK.

 

Great stuff Cort - it seems we patient experts have to help.

We do - and that's the promise of the treatment review program we are trying to put together - the UK survey was missing antivirals, many single supplements, medications for POTS, etc., artesunate, Dr. Chia's herbal treatment, stem cells, amygdala, LDN, etc. etc. What about Ampligen - there's no Ampligen in the UK! Yet look at Kelvin's progress.

Plus there are duration effects - some people may have taken treatments for too short of a period for them to be effective - the best duration for a treatment could show up in our program. Plus there's no protocol data - and most people take treatments in combination with each other - lots to be discovered!

 

And may much more of your knowledge (research behind you) flood the UK.

 

I think we all know(knew) it was viral from onset but limited tests and provision of any antibiotics here was witheld (policy). Research happily progresses US wise and though unable to obtain it's a joy to see just how your Medics (well lots) try. Antivirals being the key.

 

Thanks Cort,

I'm amazed so many said they were now at mild levels of illness. I didn't know this disease had a mild level. I wonder how they measured "Mild-Moderate-Severe" levels of illness? I also wonder what inclusion diagnostic criteria was used. The report sounds like some of these people may just have chronic fatigue, not ME/CFS. I just don't believe that many people with real ME/CFS could possibly improve to mild levels of illness with LP, GET, etc.

You got me thinking about this subjective interpretation of disease severity. For myself, after a trip to the abyss (severe bed bound) and back now to a level I consider Moderate....but would have considered extremely severe 20 years ago. Kinda like being grateful for now being run over by cars instead of trucks.

 

Wow. Talk about disappointing! You gave all the correct disclaimers at the front end, Cort, which I appreciate, but still I was shocked. Did I spend too long in the Hot Tub Time Machine? I almost wanted to check the calendar and see if it was written when Jimmy Carter was President. The only thing missing was "bloodletting at the local pub."

I know a number of M.E. patients in the UK and they have been flying to Belgium to DeMerlier's clinic for Ampligen and other cutting edge therapies; they are getting things like Valcyte and Vistide shipped to them from Canada and other countries, they are taking the train to Amsterdam to get a "cup of tea" as George Harrison called it, for pain.

Reading this makes me want to drop my "Hot Comb", go put my "Shake N Bake" in the oven, and turn on Marcus Welby.

 

Enjoyed that one Kelvin - would that we could all go to Belgium or Norway or any way out of here.

 

I know a number of M.E. patients in the UK and they have been flying to Belgium to DeMerlier's clinic for Ampligen and other cutting edge therapies;

How terribly sad that in late 2010 this statement can be made and be true. Ampligen was the 'Great White Hope' back in 1995 when I was struck down by this scourge, and back then the CFIDS Association was talking about how the FDA had been dragging it's feet for years on approving it. At the CFSAC meeting before last, a well known doctor (whose name escapes me of course) said it had 'been in the pipeline for almost 30 years".

Tragic.

 

Thanks Cort,


I'm amazed so many said they were now at mild levels of illness. I didn't know this disease had a mild level. I wonder how they measured "Mild-Moderate-Severe" levels of illness? I also wonder what inclusion diagnostic criteria was used. The report sounds like some of these people may just have chronic fatigue, not ME/CFS. I just don't believe that many people with real ME/CFS could possibly improve to mild levels of illness with LP, GET, etc.

You got me thinking about this subjective interpretation of disease severity. For myself, after a trip to the abyss (severe bed bound) and back now to a level I consider Moderate....but would have considered extremely severe 20 years ago. Kinda like being grateful for now being run over by cars instead of trucks.

I was very surprised at that. Even me, a mode - rately functioning person, I would never have dreamed have rating this ilnesses impact on my current health as 'mild'. The question was "How does the illness affect your current state of health". Anyway we do need a better analysis of these issues.

 

How terribly sad that in late 2010 this statement can be made and be true. Ampligen was the 'Great White Hope' back in 1995 when I was struck down by this scourge, and back then the CFIDS Association was talking about how the FDA had been dragging it's feet for years on approving it. At the CFSAC meeting before last, a well known doctor (whose name escapes me of course) said it had 'been in the pipeline for almost 30 years".

Tragic.

It's almost like if it wasn't for bad luck you wouldn't have any luck at all. Nancy McGRory of Hemispherx does believe that only the safety part is holding it up and that they should be OK. I don't know - the FDA cited 'efficacy' when they turned down the last application. Its partly the problem of a small company attempting to shepherd a product through. Its the same thing for everything in ME/CFS - its lack of money and lack of resources. We shall see.

 

Nancy McGRory of Hemispherx does believe that only the safety part is holding it up and that they should be OK. I don't know - the FDA cited 'efficacy' when they turned down the last application.

Given that efficacy and safety are the only two criteria for drug approval, it sounds as though Ampligen is still in trouble! And of course in the UK, cost will be an issue for NHS approval.

I hadn't realised that Prof de Meirleir was giving his patients Ampligen (or indeed anyone in Europe). I wish it was licensed in the UK.

 

I don't know what to make of the lightening process scoring so highly.
Are patient testimonials and subjective measurements reliable enough ?
Is this study protocol far more flawed and less rigorous than other treatment studies that we all love to bash and disregard ?
Is there a significant psychological component after all ?
Are a sizable proportion of the subjects misdiagnosed and suffering nothing more than depression/sleep deprivation/etc ?
Is there a strong correlation between money spent on treatment and benefits reported ?

 

Plus there are duration effects - some people may have taken treatments for too short of a period for them to be effective - the best duration for a treatment could show up in our program. Plus there's no protocol data - and most people take treatments in combination with each other - lots to be discovered!

Regarding MEA survey etc: dosage effects could be an issue. For example, Pliopys used 3000mg/day (3g/day) of L-Carnitine. That amount of L-Carnitine would be expensive in the UK - my guess is a lot of people only took 500mg or 1000mg (or possibly less).