Interestingly, JalapenoLuv, there is a big distinction across the Atlantic here. UK doctors are not the slightest bit worried about getting sued unless they are in something like obstetrics or interventional radiology. I am frightened of using drugs off label simply because I have seen people die from the use of even licensed drugs in an approved setting.
JE, I think the difference lies in our different theories about the disease and estimates about its severity. I have this disease while you merely are an observer. So as a participant with a health care background I can test different theories using drugs, supplements or any other regimen and note the effect. For an autoimmune disease theory this would be largely irrelevant since the problem requires lab testing to gauge changes.
If I had that outlook I wouldn't do it and I would focus on traditional research and accepted standards. However, I don't have that theory because it doesn't explain my symptomatology and history which clearly supports an infectious basis. Specific antibiotics are not curative because they are bacteriostatic, however they do give a clear herxheimer reaction which would not be present if it were merely an autoimmune disease, etc.
Antiviral drug mechanisms are the same, they are virostatic. So with these statics all you can get is a brief improvement in symptoms followed by recurrence. The best explanation for this is that the infectious agents are intracellular. Of course all viruses are, and bartonella spp. explains the neurological presentation.
So how does one clear out a large mass of infected tissue that is hijacking the body through specific, elaborate molecular pathways? The only answer I can think of would be a type of chemotherapy where apoptosis is triggered in the affected cells, analogous to metastasized cancer. That is the level of difficulty treating ME is. Interestingly, the level of disability parallels the amount of infected tissue.
Also, there probably is a window to treat the patient where if they pass beyond it will be impossible to recover because there will be too much tissue damage. So given that prognosis and the horrible amount of incapacity some experimentation is probably justified if the doctor has a good basis for the trial and the patient is aware of the risks. While not definitive, it could yield some useful data that could be tested more rigorously later.
What I find most difficult is when people swallow bogus science and repeat it as if it were cast iron fact - just like the CBT therapists in a way. I think Jesus said something about motes in your eye but I was never that good on the bible.
I agree, but it is human nature for desperate people to cling to whatever hope they have. And if they aren't trained in the scientific method they will treat it as a religion rather than realize that to progress it is necessary to let go of disproven hypotheses.
Sashida, Let me chew on this Myhill info which is new to me before I muddy up the water with my views in vitamins and supplements.