Ok, I have slowly read through this thread after putting the petition up. I have learnt some disagree with Jason’s definition of PEM when doing his SEID studies. Apologies I am not doing well at the mo physically so my points will not be particularly cogent! I don’t know how to multi quote either so will just have to put comments in inverted comments.
Trish, you pointed out you don't understand why Jason persists in describing PEM as fatigue for 24 hours after activity as you believe this is not PEM as Pem is post exertional
malaise,
not post exertional
fatigue. I can’t find it now but Jason cited a medical definition of malaise which gave fatigue as a synonym. So perhaps he believes in medical circles some will view malaise as another word for fatigue. My understanding some people with severe depression cannot carry out everyday activity not only due to emotional apathy but feelings of fatigue and I presume attempts at doing more would make them write down possibly they feel more malaise after attempting. Obviously the post exertional effects in ME are not fatigue and malaise but increase in many symptoms and feeling much more ill.
Sea you wrote- “I believe we need to be proactive in calling for research, and in critiquing research to ensure it is accurate, but not in demanding that a particular criteria is adopted without research that shows it is the most accurate reflection of the illness. Some of these patient groups are trying to take the place of researchers, it’s not how disease definition works.”
By this argument, the SEID criteria should not be being promoted as the diagnostic criteria by the CDC, even calling all previous criteria, including CCC and ICC as historical, implying the SEID is most up to date, as I believe the IOM criteria were not evaluated with data sets of patients and controls. *
*Jason, L. Sunnquist, M. Brown, A. McManimen, S. Furst, J. Reflections on the IOM’s systemic exertion intolerance disease. Pol Arch Med Wewn 2015 pii: AOP_15_067
I take on board the SEID criteria say "The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity"
With regards the exclusionary criteria in ICC and other criteria somebody explained it to me in this way which I found helpful as I did wonder what do people do if they have two conditions. They wrote:
“Exclusions: As in all diagnoses, exclusion of alternate explanatory diagnoses is achieved by the patient’s history, physical examination, and laboratory/biomarker testing as indicated. It is possible to have more than one disease but it is important that each one is identified and treated. Primary psychiatric disorders, somatoform disorder and substance abuse are excluded."
The important word here is "primary" which means the depressive disorder, or other psychiatric disorder, is determined to be necessary and sufficient to produce the patient's symptoms. Of course, that is a tricky situation requiring a doctor to make a clinical judgment.
The MDD could be determined to be comorbid, rather than primary, allowing the ME diagnosis. The MDD also may be determined to be secondary occurring subsequent to the onset of ME and related. The patient would then be eligible for both diagnoses. Differential diagnosis is always difficult.
With the IOM criteria lacking exclusions, primary depressive orders can be given a comorbid SEID diagnosis, even though the four SEID symptoms may be result solely from the depressive disorder and resolve when the depressive order is successfully treated. In that case, it would be, oops, it looks like that patients didn't have SEID after all.
For example, a recent IOM-based study found a significant percentage of patients with hypersomnolence (daytime sleepiness) in an Atlanta sleep clinic also met the IOM criteria for SEID. The authors of the study gave these patients a diagnosis of comorbid SEID, when it was likely that the sleep disorder was solely causing the patients' symptoms. The comorbid SEID is likely to vanish when the patients' sleep disorders are resolved.”
https://onlinelibrary.wiley.com/doi/abs/10.1111/jsr.12689
I have taken on board the comments here and appreciate any corrections to some of my points, but they haven’t persuaded me to not support the petition calling for US agencies to use ICC criteria for both diagnostic and research purposes. I can’t but forget medical agencies such as CDC and NIH in the past have said a criteria should only be used for diagnostic or research and vice versa yet ended up not doing that, I am not filled with confidence that the CDC will make sure IOM SEID criteria (which they call ME/CFS) is only used for diagnostic criteria, so I still support this petition. Medfeb’s comment that least in the US is that the NIH and CDC are saying that any definition can be used, even if it does not require PEM is incredibly concerning.
Meanwhile, as Cinders said, here in the UK we still have the dreadful NICE criteria that only requires post exertional fatigue.
