Welcome to Phoenix Rising!
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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I'm glad they were able to get these findings to show this association. However, whenever this comes up I think about all of us ME/CFS patients that are not being captured by Medicare stats because some doctors won't use the ICD code for "chronic fatigue syndrome" due to its stigma, etc. They put us under other codes. I wonder what the TRUE picture would be if ALL of us were being captured by these statistics.CMS has huge population data.
Study found raised risked of non-hodgkins disease for ME/CFS patients.
" Homo homini lupus est."I know I'm extra irritable b/c i'm in a really bad crash, but I am so so sick and tired of what an ever-increasing taxpayer circus-clown act this meeting has become. I cannot fathom how humans can possibly act this way to one another. Bleurgh!
Who is Margaret Jacobs, who expressed gratitude that IOM should agree to look into an illness.
Eileen Holderman gave a very strong emotional testimony outlining the realities of what has been going on at CFSAC in the past few years. She talked about the dismissal and destruction going on. The HHS agenda of redefining CFS as a broad illness. They have acted in bad faith.
Thank you Eileen for all your work and for serving us so well in your years on the CFSAC committee.
Where can we see this/find this testimony????
They should have brought in a representative of patients with Gulf War Syndrome. Surely their IOM experience would have been even more relevant, as GWS is so similar to ME/CFS.In their effort to try to calm us down and prepare us for the big "reveal" - study report, they invited a representative of the American Epilepsy Society who gave an interesting account of their experience with the IOM. They (patient groups) were very active with the IOM throughout the study. They worked together and were very please with the results.