Antiretroviral Treatment —
By John Herd
September 11, 2010
Periodically research has delivered small new insights into aspect of CFS physiology. Most discoveries have been relegated to “preliminary findings.” Many if not most have not panned out adequately enough to translate into more effective treatments for patients.
The physiology of CFS has remained a puzzle with its pieces randomly scattered through medical journals and others yet to be discovered.
Meanwhile CFS patients have remained very ill, their lives devastated by the illness and by economic collapse due to being too ill to work. So too do they often suffer from social isolation brought about from being too ill to go out and by the negative social stigma illness has continued to carry. If they are lucky they have received limited medical treatments that have succeeded in reducing some of their symptoms somewhat. They are desperate for any medical treatments that may even partially improve their health and quality of life.
The discovery of a strong association between CFS and retroviruses called xenotropic murine leukemia virus–related virus (XMRV) and murine leukemia viruses (MLV) may change the whole landscape for CFS patients.
We are only in the first act of the drama of how these discoveries may pan out, in terms of understanding the biology of the retroviruses and their physiologic role in CFS. Despite this there is already early evidence that some antiretroviral treatments may be effective in treating the retroviruses. There is also growing anecdotal evidence that some CFS patients are benefiting from antiviral treatments, some of which is supported by yet to be published research.
The health department’s and a number of doctors’ current position is that far more is needed to be learned about the retroviruses before antiretroviral treatments are tried on patients. In keeping with such views, they also feel that far more research is needed on antiviral treatment’s effects on the retroviruses before patients are offered off-label treatment with antiviral medications. That may take many months if not years. Part of their logic for these positions is that antiretroviral treatment outside of stringent research protocols won’t add to establishment’s need for strictly controlled and quantified objective evidence. Anecdotal evidence doesn’t cut the mustard in the realm of establishment hard science even if the anecdotal evidence is sound.
But what of compassionate care for patients? Is not compassionate care part of what health care is supposed to be about?
If some patients may benefit from certain antiretroviral treatments and wish to try them, it does not preclude the rigid science from going forward. Such clinical treatment may even contribute important insights that could be helpful to researchers and research down the road.
These steps in the advancement of CFS research and clinical treatment need not be sequential; they can take place in tandem.
Granted, some antiretroviral treatments may have significant side effects, but so too have they already been stringently researched in the treatment of AIDS.
If patients [and their doctors] wish to voluntarily try such treatments that have shown evidence of reducing XMRV/MLV, is it not compassionate care to allow them to do so?
There will always be more CFS patients ready and willing to take part in the more stringent clinical trials down the road.
Patients are part of the research team. As such they should be given the dignity and respects of being able to make informed choices for themselves.