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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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The Rituximab trials are interesting, but they still don't imply autoimmunity. The overactivity of B-cells and swelling of lymph nodes could be simply because an impairment of lymphatic functioning and/or an increase in extra-cellular debris from chronic tissue damage (physically caused, like tissue injury, not autoimmune).
Plus from what I've heard, Rituximab doesn't seem to be curative, as many just relapse. I don't know what the rate is or the quality of improvement, though. Does it just temporarily reduce cytokines or can it create a lasting change? Guess they'll find out.
There is absolutely no reason to believe something is wrong primarily with the immune system in CFS/ME
Sufficient evidence supports the finding of immune dysfunction in ME/CFS.
I must say that i think there is nothing primarly wrong with our immune system either. I agree with this doctor at some point, sorry. I would never use RTX as this moment ( according the scienetific data) as a patiënt. My mother used it an she almost died after 6 infusions, she did get a terrible shock! Very dangerous. The problem of ME is in the brain.
The Rituximab trials are interesting, but they still don't imply autoimmunity. The overactivity of B-cells and swelling of lymph nodes could be simply because an impairment of lymphatic functioning and/or an increase in extra-cellular debris from chronic tissue damage (physically caused, like tissue injury, not autoimmune)
My mother used it an she almost died after 6 infusions, she did get a terrible shock! Very dangerous.
Brain?? And what proof do you have?
The Rituximab trials do imply autoimmunity. How can I say that? It is because of the delayed effect. It usually takes 3 months before one see any effect at all. B-cells die almost immediately. That rules out a B-cell virus. As months go by antibodies start to die, and new ones are not being produced anymore. The reason it works is almost certainly the fact that autoantibodies die out.
Rituximab looks curative for 50% of those who gets 6 infusions. Several patients has been in remission for many years without RTX now.
You also say that:
Are you serious? Here is IOM's conclusion:
Another illness.Was your mother treated with rituximab for ME/CFS or another illness?
The bias on these forums is pretty staggering sometimes. Mads Reimer makes some good points. There is absolutely no reason to believe something is wrong primarily with the immune system in CFS/ME. There are certainly differences in cytokines and NK cells and whatever else, but to think their manipulation would fix anything is still just shooting in the dark.
Of course they can try, but it does seem stupid and maybe even unethical to try such a damaging drug. Some side-effects of Cyclophosphamide: nausea, vomiting, stomach ache, diarrhea, joint pain, unusual tiredness tiredness or weakness, and lethargy.
What the fuck are they thinking?
We'd all agree that ME affects the brain, to varying degrees, but I think many would question, or disagree with, the assertion that THE problem with ME is in the brain. Perhaps this reflects the fact that many of us have different subjective experiences of the illness, and that there is a degree of heterogeneity in patients who receive an ME or CFS diagnosis? Patients who regularly experience flu-like symptoms may interpret it as indicating a primary immunological disease. Patients who experience primarily cognitive symptoms may interpret it as indicating a neurological disease. My personal bias is that the answers do not lie solely within the brain but lie primarily within the immune system which affects the nervous system and the brain (e.g. immune cells within the brain.) And I think that mitochondrial dysfunction may play a central role: mitochondrial dysfunction could potentially be caused by immunological abnormalities or it could cause immunological and neurological dysfunction.The problem of ME is in the brain.
That's a hypothesis/observation that can easily be tested in the rituximab trials.I forgot; i would never use RTX if you are longer sick then 3 years because the data of Lipkin shows the immunesystem is burnout.
In Germany they did a study with RTX (not publiced yet) it didn''t work at all.
I think that's an interesting hypothesis/observation that needs to be tested in the rituximab trials.
Placebo effect deleder? Just kiddingRituximab has made several patients healthy again including dr. Maria Gjerpe who had ME for 20 years.
Placebo effect deleder? Just kidding
Thanks deleder. Maria Gjerpe's response to rituximab clearly indicates that long-term patients can respond to rituximab.Rituximab has made several patients healthy again including dr. Maria Gjerpe who had ME for 20 years.
In the Mikovits/Bieger video, Dr Bieger said that they'd prescribed rituximab to 10 patients. None of the patients experienced an improvement and two experienced deterioration. As you say, I was under the impression that this was off-label prescription rather than a clinical trial. It would be helpful to understand why they're getting different results to Fluge and Mella. They might be using a different diagnostic/selection criteria, or they might have used different doses and different infusion time intervals to Fluge and Mella. Buy it's the clinical trials that carry the weight in terms of the evidence. The off-label prescription anecdotes are interesting, but they don't tell us much in themselves.No, there wasn't any study. There were a couple of patients who received RTX as an Off-Label treatment. It's hard to draw any conclusions from that. Only clinical trials will tell.
Sometimes things like this can lead to new understanding. Recruitment criteria, different protocols, different complications ... when this is examined by those involved sometimes they find out something new.It would be helpful to understand why they're getting different results to Fkuge and Mella.
There is absolutely no reason to believe something is wrong primarily with the immune system in CFS/ME.