- Messages
- 17
When biomarkers and case definitions can't be agreed upon, how on earth can we know, for certain who, using rituxan privately or outside clinical trials, actually has what is thought of as ME/CFS/CFID/SEID? The complexity of neuroimmune and autoimmune disease is so vast and unknown, the constellation of symptoms that is now commonly associated with ME/CFS may end up being 5 or 10 or 20 distinct problems.
For almost 2 years (being sick for longer), my young adult daughter has been in the academic medical diagnostic system after an initial ME/CFS diagnosis from a recognized ME doc in the US. She has seen many specialists and subspecialists. She has had hundreds of labs, various scans, and procedures. She is now at a point where one of her subspecialists has data--and a potential measurement to see if therapy is effective-- that may warrant treatment with IV immunomodulator therapy like Rituxan.
There is no way in hell that she is going to turn that opportunity down if she gets it.
I personally think that any patient who can get it prescribed and who is educated about the risks should have the chance to take it. Compassionate use. Spending the pension or the school fund--whatever. Patients rights. Get the governments and rhe bureaucrats out of the way. People have sufferred long enough. It is a human rights violation that people have to choose between their pension and a potential treatment, but if doing nothing means you will ever have a shot at getting better, where is the choice really? Do nothing and stay sick or take a risk--a gamble--and maybe get a shot at being able to fight for those rights.
If there are millions of people with ME/CFS globally, the people on this forum are hardly a statistically significant representation of the complete disease picture. Some anecdotal reports are far from being scientifically significant without the concrete data that demonstrates effectiveness or lack of effectiveness of the therapy. Where is the lab or biopsy or other objective marker that says, "we can say conclusively that Rituxan did or did not help this patient based on the changes or lack of changes in X or Y." How is it possible to know without those markers whether sleep issues, inflammation, or digestive changes or increase in fatigue were caused by Rituxan and not perhaps, another factor? That is what is so frustrating about this disease--is half the time you can't even be sure that 5 people in the room who all supposedly have the ME diagnosis actually have the same ME--and it isn't Lyme, or paraneoplastic syndrome or some obscure autoimmune condition of a weird neurotransmitter like anti-NDMA receptor encephalitis turned out to be.
That being said, the one thing that everyone in this forum has in common is that the medical community has failed them. At this point, in my mind, anything goes. If you can get it, go for it. Rituxan, IV Ig--whatever it takes. The healing has to start somewhere.
For almost 2 years (being sick for longer), my young adult daughter has been in the academic medical diagnostic system after an initial ME/CFS diagnosis from a recognized ME doc in the US. She has seen many specialists and subspecialists. She has had hundreds of labs, various scans, and procedures. She is now at a point where one of her subspecialists has data--and a potential measurement to see if therapy is effective-- that may warrant treatment with IV immunomodulator therapy like Rituxan.
There is no way in hell that she is going to turn that opportunity down if she gets it.
I personally think that any patient who can get it prescribed and who is educated about the risks should have the chance to take it. Compassionate use. Spending the pension or the school fund--whatever. Patients rights. Get the governments and rhe bureaucrats out of the way. People have sufferred long enough. It is a human rights violation that people have to choose between their pension and a potential treatment, but if doing nothing means you will ever have a shot at getting better, where is the choice really? Do nothing and stay sick or take a risk--a gamble--and maybe get a shot at being able to fight for those rights.
If there are millions of people with ME/CFS globally, the people on this forum are hardly a statistically significant representation of the complete disease picture. Some anecdotal reports are far from being scientifically significant without the concrete data that demonstrates effectiveness or lack of effectiveness of the therapy. Where is the lab or biopsy or other objective marker that says, "we can say conclusively that Rituxan did or did not help this patient based on the changes or lack of changes in X or Y." How is it possible to know without those markers whether sleep issues, inflammation, or digestive changes or increase in fatigue were caused by Rituxan and not perhaps, another factor? That is what is so frustrating about this disease--is half the time you can't even be sure that 5 people in the room who all supposedly have the ME diagnosis actually have the same ME--and it isn't Lyme, or paraneoplastic syndrome or some obscure autoimmune condition of a weird neurotransmitter like anti-NDMA receptor encephalitis turned out to be.
That being said, the one thing that everyone in this forum has in common is that the medical community has failed them. At this point, in my mind, anything goes. If you can get it, go for it. Rituxan, IV Ig--whatever it takes. The healing has to start somewhere.
