The disgraceful (corruptly manipulated and falsified data) PACE trial (Lancet 2011) was yet another attempt to demonstrate the ME was due to psychological flaws and/or laziness. Unfortunately it had widespread influence and has caused enormous harm to ME sufferers, their families, friends, and communities all around the world.
A very detailed overview, thank you. Regarding the 25% still having ME after 10 years, that does seem an underestimate, though I've struggled to find any remission and recovery studies that adequately screen for ME/CFS at entry criteria (especially with PEM), and they usually only cover a short study timescale. If you have any references covering this area, I'm keen to learn more, and I would be most grateful if you could point me in the right direction please?
Thank you for pulling so much historical information into one place.
Such an important compilation. Thank you.
The disgraceful (corruptly manipulated and falsified data) PACE trial (Lancet 2011) was yet another attempt to demonstrate the ME was due to psychological flaws and/or laziness. Unfortunately it had widespread influence and has caused enormous harm to ME sufferers, their families, friends, and communities all around the world.
Really interesting to see how his ideas changed, and that it was initially the name of an acute illness.
One geographical point to note is that Durham is in the NE and Cumbria is in the NW!
Thanks for catching that, I've updated it.
A very detailed overview, thank you. Regarding the 25% still having ME after 10 years, that does seem an underestimate, though I've struggled to find any remission and recovery studies that adequately screen for ME/CFS at entry criteria (especially with PEM), and they usually only cover a short study timescale. If you have any references covering this area, I'm keen to learn more, and I would be most grateful if you could point me in the right direction please?
I don't think there are any good studies on this unfortunately. I've heard of one small study which found that 5% of people eventually recover.