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.
This was so informative. I have never quite understood how the viral outbreaks of ME fit in with the more usual pattern of isolated occurences. But now it makes sense -- of course it would be viral outbreaks of SOMETHING, with ME as a post-viral sequel. Also, it's amazing how much Dr Ramsay had right, how much he understood that has held up over 50-60 years later. If only the medical establishment had listened to him! So much suffering would have been prevented!
It is notable that three ME literate physicians, Byron Hyde, Alexis Shelokov and Gordon Parish had analyzed the 1985 Lake Tahoe outbreak being investigated by CDC epidemiologist Dr Gary Holmes and pronounced it to be "a typical outbreak of ME"
This applied to Tahoe alone since none of the other clusters such as Lyndonville or Sacramento had been investigated, and the Tahoe Mystery disease outbreak was the subject of the 1987 Holmes committee, which all three attended. They were unsuccessful in getting the CDC to use the ME term for the proposed new syndrome.
This explains why some say ME and CFS are the same thing, because the prototypes for Holmes 1988 CFS had been diagnosed with ME by Hyde, Shelokov and Parish immediately before these very same people were used as prototypes for Chronic Fatigue Syndrome.
(The newly discovered HBLV made it scientifically improper to use the ME term as HBLV was not known in ME)
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.
This was so informative. I have never quite understood how the viral outbreaks of ME fit in with the more usual pattern of isolated occurences. But now it makes sense -- of course it would be viral outbreaks of SOMETHING, with ME as a post-viral sequel. Also, it's amazing how much Dr Ramsay had right, how much he understood that has held up over 50-60 years later. If only the medical establishment had listened to him! So much suffering would have been prevented!
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.
Great article. Thanks! Amazing that the docs in CA didn't connect the dots when they started seeing patients with the same illness in the mid 80s.
It is notable that three ME literate physicians, Byron Hyde, Alexis Shelokov and Gordon Parish had analyzed the 1985 Lake Tahoe outbreak being investigated by CDC epidemiologist Dr Gary Holmes and pronounced it to be "a typical outbreak of ME"
This applied to Tahoe alone since none of the other clusters such as Lyndonville or Sacramento had been investigated, and the Tahoe Mystery disease outbreak was the subject of the 1987 Holmes committee, which all three attended. They were unsuccessful in getting the CDC to use the ME term for the proposed new syndrome.
This explains why some say ME and CFS are the same thing, because the prototypes for Holmes 1988 CFS had been diagnosed with ME by Hyde, Shelokov and Parish immediately before these very same people were used as prototypes for Chronic Fatigue Syndrome.
(The newly discovered HBLV made it scientifically improper to use the ME term as HBLV was not known in ME)
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.