Welcome to Phoenix Rising!
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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...i don't know if solutions will come in time for some of us....even if we just want a few good years before we die!
FDA approval for anti-retrovirals.
We are talking right now to Merck to start a clinical trial, for CFS patients.
The reason to do that is that a lot of patients are already taking these drugs, and blogging about it on the web.
We are in the very early stages of talking and it may not materialise in the form of a clinical trial.
Difficult to measure outcome of anti-retrovirals because CFS is a relapsing/remitting illness.
We could measure viral loads before and after. It's difficult.
If you read between the lines here, doesn't this indicate that they (Dr. Singh) are finding XMRV in CFS patients? Otherwise, there wouldn't be discussion with Merck on possibly doing a trial. That's what it seems like to me at least.
Dr Singh:
We are talking, right now, with Merck to start a clinical trial, which would be double blind, placebo controlled, clinical trial in chronic fatigue syndrome patients.
And the reason to do that was that it was brought to my attention that a lot of patients were already taking these drugs, and were blogging about it on the web.
So it just seemed wrong to not actually try to find out by scientific means if these drugs were effective or not.
So we are in the very early stages of talking... it may not materialize in the form of a clinical trial.
Dr Singh:
We are talking, right now, with Merck to start a clinical trial, which would be double blind, placebo controlled, clinical trial in chronic fatigue syndrome patients.
And the reason to do that was that it was brought to my attention that a lot of patients were already taking these drugs, and were blogging about it on the web.
So it just seemed wrong to not actually try to find out by scientific means if these drugs were effective or not.
So we are in the very early stages of talking... it may not materialize in the form of a clinical trial.
Difficult to measure outcome of anti-retrovirals because CFS is a relapsing/remitting illness.
We could measure viral loads before and after. It's difficult.
Worst crash I ever had was after lumber puncture in 1995. By US researcher who was investigating a mysterious virus in CFS in Brisbane, Aust. He found it in me. Then he ran out of funding and went back to US. Steve Robbins, I think his name was. Can't really rely on memory for that. But if anyone has any follow up info on that I would be grateful.
Is this your guy, RustyJ?
Dr. Steven J. Robbins - Potential animal (zoonotic) virus identified in patients with Chronic Fatigue Syndrome, Multiple Sclerosis and Epilepsy.