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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Live webcast IoM meeting Jan. 27th 1:pm starting

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Jeannette: "like Mindy says it's 'insanity'"; IoM not qualified; Fukuda was a disaster, destroyed so many lives; you can not produce a meaningful definition. Your definition will be destroyed. Patients will fight you to the end with lawsuits and public opinion.

Haha. I love it!!!
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Mary Dimmock speaking personally about how her child's health was destroyed by climbing Mt. Washington because exercise was emphasized to him as critical after his ME/CFS diagnosis. emphasizes PEM. heterogeneity is man-made in CFS. applause. 'spectrum' idea isn't valid. You need a ouiji board to make sense out of all the studies based on all the different definitions.

Nice!
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Eileen calling for cancellation of contract, citing all the evidence of opposition- fifty expert letter, letters to congress, calls from congress, tweets, 171 advocates, etc.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Eileen: This IoM process is fatally flawed. You are good experts, but HHS has rigged the game like they always do. CFSAC recommended a workshop to adopt CCC; it is outrageous what HHS has done with this- Eileen and others who object to govt definition plans threatened by govt; IoM has already written studies on ME that are very incorrect; we have a good definition CCC, these three processes are a waste, cancel them; start studying the disease, it's been 30 years.