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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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do you know any more details about the german group ? like is there anywhere I could read about the dosage and frequency etc ?
regarding subgroups, I do not in any way mean to be disrespectful or dismissive but why would we think that autoimmune/immune dysfunction driven CFS people are a slice as opposed to all of us when we are talking about people who fit the more robust criteria (PEM , memory problems, comprehension and word finding problems, unrefreshing sleep, sensory overload, POTS or less specific OI etc) ? If NK cells being both ineffective and low in number is a common characteristic wouldn't this indicate most of us are this way either because of or VIA a mechanism of a now errant immune system ?
I ask because I want to keep my own expectations firmly in check RE this medication but at the same time I imagined that ritux or related drugs would easily treat more than 20% of us. don't we still have a long way to go with observing the rate and effect of B-cell depletion so a balance can be struck with spacing between infusions, how long a treatment schedule goes for and the actual dosage ?
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I found a new study showing that Iguratimod, an anti-inflammatory drug, reduces the level of pro-inflammatory cytokines in patients with RA. I wonder if it would work in ME too.
http://www.ncbi.nlm.nih.gov/pubmed/26713003