Quite right. I was being silly.Well I wouldn't want to be thought contagious. Propaganda in this direction would be very dangerous. Our side needs to stick to facts so we can hold that high ground of having not given in to corruption.
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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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Quite right. I was being silly.Well I wouldn't want to be thought contagious. Propaganda in this direction would be very dangerous. Our side needs to stick to facts so we can hold that high ground of having not given in to corruption.
AIDS activists will tell you that they had a too long delay before the world took up their cause, just as we are currently experiencing . Even after a big push started, it took years for the science to sort out what was going on and for medications to be developed and tested. It didn't happen overnight for them, either.
It's miserable and unfair to have a serious disease in the pre-acceptance stage. It feels wrong that we have to wait years for big things to happen while we continue to suffer. But that's the way life works. We can't make the Ritux trial happen any faster than it is. All we can do is push to get more research started sooner so that overall the knowledge base increases faster. It's still going to take years to perform the research. In the meantime, we do what AIDS patients did at the same stage, make the most we can of the treatments available to us -- AVs, abx, hormone supplementation, OI treatments, immune modulators, and so on. They're not cures and they're sure as heck not perfect, but they're what we have while we wait for a cure.
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There has to be some dramatic way of presenting this monster of an illness.
It's a personal choice apart from it's expensive and not readily available.Well, for some people, Rituximab is an available form of treatment (as expensive as it may be), so the logic of making the most of the treatments available to us, which you used in your post, means that people who currently have access to Rituximab and who have already tried the less expensive forms of treatment, to no avail, should go ahead and get that Rituximab, since the evidence on its efficacy (although not taken from a massive sample size) is far more convincing than the evidence of the efficacy of any other form of CFS treatment. Would that be correct for me to assume? I am just trying to figure out if I understand you correctly. If so, that is exactly the opinion that I hold. I think that anyone who has access to Rituximab and has tried the cheaper, more common forms of CFS treatment without experiencing any significant positive response should definitely use all the tools at their disposal and get Rituximab!
I can't say I'm up on the details of Ritux treatment since I'm not likely to get it given the state of my immune system. I'm certainly not opposed to people who can get it taking it. That doesn't mean it's going to be available to most of the ME population until the research is established. I don't think it's too dangerous for PWME or anything silly like that. If it's not too dangerous for RA, it's not too dangerous for ME. I am a realist about availability, though. Most doctors are not going to prescribe it, and insurance companies (or socialized medicine systems) are not going to pay for it without more evidence of efficacy for ME than we currently have.Well, for some people, Rituximab is an available form of treatment (as expensive as it may be), so the logic of making the most of the treatments available to us, which you used in your post, means that people who currently have access to Rituximab and who have already tried the less expensive forms of treatment, to no avail, should go ahead and get that Rituximab, since the evidence on its efficacy (although not taken from a massive sample size) is far more convincing than the evidence of the efficacy of any other form of CFS treatment. Would that be correct for me to assume? I am just trying to figure out if I understand you correctly. If so, that is exactly the opinion that I hold. I think that anyone who has access to Rituximab and has tried the cheaper, more common forms of CFS treatment without experiencing any significant positive response should definitely use all the tools at their disposal and get Rituximab!
I can't say I'm up on the details of Ritux treatment since I'm not likely to get it given the state of my immune system. I'm certainly not opposed to people who can get it taking it. That doesn't mean it's going to be available to most of the ME population until the research is established. I don't think it's too dangerous for PWME or anything silly like that. If it's not too dangerous for RA, it's not too dangerous for ME. I am a realist about availability, though. Most doctors are not going to prescribe it, and insurance companies (or socialized medicine systems) are not going to pay for it without more evidence of efficacy for ME than we currently have.
Just to clarify a point -- there is almost no evidence for any treatment for ME. Patients who get treatments like antivirals, antibiotics, or OI treatments don't get them for ME. They get them for documented viral or bacterial infections, and documented OI, not for ME. Similarly, patients who have conditions other than ME for which Ritux is a treatment may get Ritux for that. If it helps with ME symptoms as well, that's a plus. Getting any treatment specifically for ME is going to be very difficult until there is some established research that the medication treats ME symptoms specifically. We don't have that... yet.
Interesting. Were they paid for by insurance or a socialized medicine system, or did you pay out of pocket for them?Jenny said:I've had a several different anti-virals and abx for ME without any documented infections - just on an experimental basis.
Interesting. Were they paid for by insurance or a socialized medicine system, or did you pay out of pocket for them?
If you got them through the NHS, I'm sure your fellow UK PR members would be interested to hear how you achieved that. It's not easy to get any system to pay for treatments that are not considered established for the condition, especially where ME is concerned. If you've figured out a way, there are probably thousands of people want to know what it is.
Great work! I'm sure many other people wish they could achieve what you have. Sorry I mentally misplaced your previous posts about your treatment. It's good to be reminded that the information is here at PR for other members to find.I got them in the UK mainly on the NHS. (A great 'socialised' system.) I've posted about my treatment several times.
Great work! I'm sure many other people wish they could achieve what you have. Sorry I mentally misplaced your previous posts about your treatment. It's good to be reminded that the information is here at PR for other members to find.
I got them in the UK mainly on the NHS. (A great 'socialised' system.) I've posted about my treatment several times.
What were you prescribed, out of interest?
I´m sorry that they didn´t work, but it just shows what a lottery the NHS is - I have found reports of the NHS treating people with Chronic Yersinosis (my diagnosis), but when I asked my GP about this possibility he said he wouldn´t even know who to refer me too, and it ended there.
Those of us who have achieved substantial improvement under the care of specialists who understand the disease would beg to differ with you. There are some effective treatments. The problem is there's likely to be multiple conditions under the current label ME/CFS, so the specialists need to investigate each case and find the treatments that can improve the health of each individual patient. There's not a one-size-fits-all treatment.I don't blame the NHS, the fact is that there are no effective treatments for ME available even under private health care.
Those of us who have achieved substantial improvement under the care of specialists who understand the disease would beg to differ with you. There are some effective treatments. The problem is there's likely to be multiple conditions under the current label ME/CFS, so the specialists need to investigate each case and find the treatments that can improve the health of each individual patient. There's not a one-size-fits-all treatment.
So I agree there's no single treatment that will improve the QOL of every patient and there's no cure. That doesn't mean, imo, that there's no effective treatments at all for the conditions labelled ME or CFS.
This is an important point to me because I think patients need to understand that the situation is not hopeless.