Video: ME/CFS Alert, "Interview with Colleen Steckel, ME advocacy.org Ep 107"

I have just watched it.

I can see why some people who support the ICC criteria and primer are not happy with the broader focus of the IOM criteria, but I am concerned about the insistence that only those meeting ICC and or CCC have 'true ME'. How can we know until we have biomarkers that divide us into biological subgroups rather than descriptive ones?

Also the focus of the group seems to be very much on sharing 'what works for some patients' as treatments, rather than on scientific evidence.

I wish them well, but don't think I want to be that exclusive without biomedical evidence to back it up. [edit: nor to I want to fall down the rabbit hole of taking dozens of different supplements and medications a day on the basis that they 'work for some people']

Edit: She also repeated several times that the NIH study found that 6 of the 19 ME patients they have studied in the first phase didn't have ME after all but had something else. I think that is inaccurate. My impression from Brian Vastag (@B_V) was found to have ME, but to have something else in addition to ME that excluded him from the study, because that second condition could confuse the data, and with only studying a small sample they need to be sure the evidence they collect from patients is about ME, not something else.
 
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Cort says
High Percentage of Rare Diseases
It’s a small sample set but it’s remarkable how many people participating in the first week were diagnosed with a rare disease. In something of a testament to the thoroughness of the study, almost third of week one participants (6/19) were found to have a rare disorder which the researchers believed was probably causing their symptoms and dismissed from the study. One appeared to have Parkinson’s Disease, another a neurological disease and I’m unsure of the others.
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in an article discussed in this thread
https://www.s4me.info/threads/dr-na...-a-few-rare-diseases-pop-up-23-mar-2019.8723/

Brian's comments on his diagnosis in the same thread can be seen here, https://www.s4me.info/threads/dr-na...es-pop-up-23-mar-2019.8723/page-3#post-163721
where he says, in part,
I do have both disorders. I definitely qualify as having ME/CFS under the most stringent criteria, as determined by the five-person expert adjudication committee adjourned by NIH. I also have some sort of myositis.
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I remember watching Brian Wallit's talk about this at the NIH conference. The figures he showed seemed to put the high percentage of rare diseases in the intramural study into perspective. See: https://www.s4me.info/threads/nih-a...th-and-5th-april-2019.7745/page-8#post-157839

It's possible that Nath gave Cort some more recent figures but I wouldn't draw any conclusions from this information or use it as an argument until we know more about it.
 
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