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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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All these threads on the same thing are confusing. I'm not sure where to answer.
I don’t think any of his assumptions are questionable. He is trying to reverse engineer the problem and find dysfunctional part of the brain which is responsible for all the symptoms we have. That’s the key to solving this disease.All these threads on the same thing are confusing. I'm not sure where to answer.
Reading through the paper, I find I have several disagreements with many of his assumptions, based on other things I've read as well as my own experiences. I don't doubt that a few people may have whatever disease he's talking about, but do not find it describes what I have and others I know. And, he says:
"As a caveat and for clarification we want to add an important qualifier. It is unknown if ME/CFS can be legitimately conceptualized as manifestation of a single, underlying pathophysiological process. Indeed, many ME/CFS researchers question a universal pathological matrix especially across the
different etiotypes of the disease. This may be seen as a discouragement or even fatal blow to the approach presented in this working paper."
There are patients with mycotoxins, Epstein Barr, Cocksackie B, CCI, arsenic toxicity, thiamine or B12 or iron or tyrosine or citrulline deficiency, adrenal insufficiency, lipopolysaccharides, oxidative and nitrosative stress and many other etiologies and drivers of their disease.
Furthermore, not all of us experience PEM has he describes it, not do our physical symptoms equate with our mood. I don't doubt that glial cells play a role, but I'm not convinced that his assumptions and then the conclusions he derives from those somewhat questionable assumptions neatly explain our problems across the board.
Both genetic and environmental factors can play a role.I don’t think any of his assumptions are questionable. He is trying to reverse engineer the problem and find dysfunctional part of the brain which is responsible for all the symptoms we have. That’s the key to solving this disease.
Author is saying that understanding “neuro-orthopedic” ME etiotype is crucial because it localises the problem. If I understood correctly, author means any process that leads to brainstem perfusion abnormality will consequently lead to ME. I believe this is 100% correct.