This issue is far more complex than the petition and the Facebook note suggest. I'm not sure we gain anything by being reductive and not discussing the validity of multiple criteria honestly and openly. We don't have a biomarker so we need something accurate but not unworkable or too specific.
The research (as always), is muddled. Jason did two studies, which showed both the CCC and ICC had higher rates of psychiatric illness (about 61% to 27%) versus the CDC.
Meanwhile, he claimed that the most accurate criteria were an alternative set of ME criteria, which are based on Ramsay's, because they don't select patients with such a high prevalence of mood disorders. I'm assuming that was the London Criteria, because they're described thus: 'a sudden onset, post-exertional malaise, at least one neurocognitive symptom, and at least one autonomic symptom, and is based on some of the original work from Ramsay and other theorists in the 1980s and 1990s.' (I'm assuming the others are Dowsett et al.)
Jason didn't just look for the number of symptoms but their regularity as well. Having a migraine once a month isn't the same as having them once a day. He's developed questionnaires to capture these symptoms, so it's possible the fault is in the questions instead. His later study also suggests the hardest symptoms to capture were the immune ones (notably catching more viruses), which is interesting, because another study found immune symptoms the easiest way to distinguish between ME and MS from symptoms alone (
https://www.ncbi.nlm.nih.gov/m/pubmed/28066845/).
ETA: If CCC and ICC can't accurately capture the immune symptoms, that in itself may be an issue. Again, though, it could be the questionnaires. But we're left with the same problem: if Jason can't capture these symptoms, how can a doctor with less experience of the illness?
Other studies are a bit more generous, and suggest that as long as you use PEM, even Fukuda seems pretty accurate:
https://www.ncbi.nlm.nih.gov/pubmed/22521895. Here, both the CDC and CCC seem quite similar if PEM is required:
https://www.ncbi.nlm.nih.gov/m/pubmed/25308475/. And SEID captures similar patient cohorts to other criteria too:
http://wames.org.uk/cms-english/2017/03/patients-diagnosed-with-mecfs-also-fit-seid-criteria/.
What's clear to me is that more complex criteria select more complex cases. But mild and early illness patients might struggle to get a diagnosis with more complex criteria. There's also a likelihood that more psychiatric illnesses are captured by more complex criteria--either because it's actually misdiagnosing people, or because more symptoms = more distress (but this alone doesn't seem to account for the massive difference in percentages).
Perhaps the inclusion of more neurological symptoms is the cause of greater psychiatric distress? The more problems with the brain, the more likely affective symptoms are to arise as well, perhaps?
As far as I can tell, this petition is written by patients, not doctors. At least, no doctors have publicly put their names to it. It doesn't read to me like an 'official' petition, at least.
If you look at the comments by Twisk above, too, it gets even more interesting. He's not endorsing ICC but something closer to Ramsay or London. He talks about muscle fatiguability, not PEM or PENE. Is he recommending the same criteria as Jason?
I notice the Facebook blog attacks Jennifer Brea personally, and the comments beneath make some distasteful inferences in response to her hospitalisation with paralysis and breathing problems. There's an implication she was involved in the new CDC guidelines, beyond being a stakeholder, and that she knew when they'd be posted online so started reading up on atypical polio two days before as a distraction! That makes me distrust the author's whole blog, frankly, and sounds like she has an axe to grind.
I think it's important we figure out what the best criteria are, but I'm sure we can do it without insulting each other too. Both Jason and Twisk seem to be veering towards a simpler criteria (which is very IOM-like, but notably broadens 'cognitive impairment' to one 'neurocognitive symptom', which is perhaps wise; and OI to 'autonomic symptoms') based on Ramsay rather than anyone else.
Here's Cort's summary of the CCC and ICC issues:
https://www.healthrising.org/blog/2...oth-may-select-for-more-psychiatric-patients/