These demands were originally issued for the May 25, 2016 MillionsMissing demonstrations. Minor revisions were made to the demands in November 2016 to reflect community input on the definition, the primer, the name, and the need for improvements in clinical care. You can access and download a pdf of the revised protest demands by clicking on the button below.
Press Release: Advocates Urge Administration to Reinstate Long COVID Advisory Committee
March 6, 2025
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Press Contact: #MEAction: [email protected] Patient & Expert Voices Must Be Heard: Advocates Urge Administration to Reinstate Long COVID Advisory Committee #MEAction and the Patient-Led Research Collaborative – leading organizations advocating for people with Long
4 thoughts on “#MEAction US protest demands”
I personally think it is a mistake not to have Fukuda with mandatory PEM as a selection of cohorts. CCC and ICC describe many with ME/CFS but not all and I would have met Fukuda early on in my disease but not CCC or ICC although I do meet them now. Fukuda and SEID (which I would have met at 6 months easily) are useful in early diagnosis for many before disease progression and meeting CCC and ICC criteria when you are usually disabled.
Being disabled is no time to diagnose which is why it took me 25 years for diagnosis when I met CCC criteria. Fukuda was around but no doctor would go out on a limb then to Dx me and when I imploded it just so happened it was the same year CCC was created.
Patients that are meeting SEID and Fukuda w/ mandatory PEM need to be studied and it just needs to be noted in the study which patients are meeting which criteria.
And I think SEID should be used on a clinical level and the DePaul Filter used to put those who meet SEID into research. Then Fukuda w/ mandatory PEM, CCC w/ mandatory PEM or ICC (ICC will never happen I am sure) can be applied and should be noted in studies so grouped results can be researched. Some will meet all criteria, some one or two and that should be noted.
But SEID should be used on a clinical level to diagnose everyone and then the other criteria can be used for severity. CCC and ICC Dx the disabled. SEID will Dx on a clinical level and hopefully proper treatment can be applied before they get to meeting CCC and ICC which I believe those that meet them are disabled.
Also, CCC in the clinical world does not allow for a patient to have some other diseases which isn’t realistic.
Can you provide a link to the results of your survey which the edits are based on?
Yes, Gabby — we will have a broader analysis available soon.
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