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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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At the end of the day, do we really care if B cells are the cause or effect, if a treatment for B cells removes a very nasty symptom that nothing else even really touches?Therein lies the problem. We don't know what low B Cells mean. Are any changes in B cells a cause or effect of me/cfs? How are these changes compared to a healthy population. Again we don't know.
I think most expectations regarding Rituximab are realistic. It might work, it might not. It might work for a while, or it might just work a little. Or it might make us worse. But thus far there are indications that it does work to some extent, that harm is very unlikely, and there is a somewhat sensible outline of an explanation for why and how it might work. CBT and GET on the other hand, are shown not to work, are widely claimed to cause harm, and make no sense in the context of treating ME/CFS.What I don't understand is that posters and I include myself, don't like the cookie cutter approach of PACE/GET/CBT, yet are willing to consider Rituximab as a cookie cutter cure, when it may be a subset of patients who are helped. This is why we need more studies. It's how science works.
All ME/CFS patients are not the same. Some are strongly anti-vaccination, and some are undoubtedly very eager to try Rituximab. There is no evidence that these two groups overlap. Furthermore, you're talking about very different treatments with very different effects and potential side-effects.I also find it a bit ironic that some are so against vaccines which do does have credible science behind them as well as groups who should probably stay away from certain types of vaccines and yet are willing to put Rituximab into their system.
Do you have a link to support this statement?Mella and Fluge have asked doctors to not prescribe Rituximab until more is known about it's efficacy and who it helps.
I'm glad we're all in agreement then.If people choose to take Rituximab, that is their choice.
http://www.tv2.no/nyheter/innenriks/helse/-naar-kan-vi-andre-faa-mebehandlingen-3615662.htmlOne of the questions that many wondered was from people suffering from fatigue syndrome, and dependents of such. They can not wait to try out the treatment with the drug MabThera itself.
"Very many of you to want medication or participation in studies.Unfortunately, most people wait until treatment is established in the regular health care system. Patient stories we hear make an impression and we have a full understanding of the suffering and humiliation many patients have experienced. The best we can do for ME patients is to conduct thorough and well-planned studies to learn as much as possible about the disease, its causes and how we can use Rituximab best, "writes the two.
At the end of the day, do we really care if B cells are the cause or effect, if a treatment for B cells removes a very nasty symptom that nothing else even really touches?
Flu vaccinations require a healthy immune system, which evidence suggests we do not have. A lot of us don't get out much so aren't exposed to much. Some of us became ill after vaccination. The consequences of not being vaccinated are relatively mild. There are nasty substances in vaccines which the body needs to detox, an area in which we might be impaired. There have been studies specifically of CFS patients following vaccination, and there was an abnormal immune response. In the case of ME/CFS, there is plenty of reason to believe that the potential benefits of flu vaccination do not outweigh the potential risks.
This is not the quote I was looking for but it basically says the same thing, just not as emphatic. Remember this is translated. I have also written someone in Norway who may provide me with the quote.
So again I would have to ask why take something where we don't know the benefits vs.risk profile.
This needs more research. Fluge and Mella have no idea why Rituximab appears to have worked in their study. They didn't BLIND* their study. They are however, willing to continue to find some answers.
(*Either that or they didn't use controls I can't recall offhand)
Mella and Fluge's study with 30 subjects was both blinded and controlled. As you are a prolific debater on this site, you should clarify for yourself what these terms mean so as not to mislead readers.
Mella and Fluge's study with 30 subjects was both blinded and controlled. As you are a prolific debater on this site, you should clarify for yourself what these terms mean so as not to mislead readers.
(My bold.)At one point we totally agree with the critics: Rituximab should not be used to treat CFS/ME outside of clinical studies at present. We also agree that more research is needed.
That is to mix contexts in ways that produce nothing more than - "please stop making your point, I don't like it". None of the conversations on an internet forum are fixed - people are coming and going all the time, and unless there is definitive material to direct people to, then new readers may well be interested to see that some people are sceptical, or concerned or have a different perspective than those who are enthusiastic about (other people ?) experimenting with off label or non medical treatments.Stop playing on "risks" already. YES it is a drug used for cancer treatment. That does NOT automatically make it particularly dangerous. It makes it highly tested and with a very good safety record. I can read the research and have done, and the fear-mongering is getting really old.
I think we assume that a very expensive CFS doctor is going to cover other things in addition to M.E./CFS (she knew about his main approach), that's what I thought when I went to miami. Also, she's mostly bedridden and he was nearby, not all patients are well enough to do research. I.E. I have seen a CFS doc who tried to treat any sleep issues as well as did tilt table tests, tested for lyme, etc. etc.Callie, why did you friend go and see this particular doctor if she wanted help with sleep and POTS?
This is yet another example of a doctor experimenting on his patients. As with Ampligen.