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