One could argue that it's the system's fault, and not the doctors - and I to a large extent agree to that. But that said, I think the doctors should be sticking up for their patients more than they do currently, despite the system being like it is.
Hi redo, but
who is the "system"? Individual doctors are not the "system", but collectively they are most of it. Some more gets thrown in from government, societal attitudes, and insurance interests. Individual doctors are failing the "system" by not speaking out. Government is failing the "system" by not making the medical profession more accountable. We, as patients, are failing the "system" by not demanding better treatment. The insurance industry is failing the "system" by allowing patients to get worse over time and so cost more in the long run ... maybe not to the individual insurers, but to society as a whole (in which case the insurers are failing societal expectations).
This is the second time I have tried to post this more general reply to the question of ARVs. The last time the window imploded. Was this an omen?
Taking ARVs to treat ME is a non-issue. So few of us are taking them.
For me, this is not an option at this point. With my current understanding, current symptoms, and current resources, the risk/benefit ratio is wrong. For someone else in a different situation, the risk/benefit ratio could be different.
I have no moral issues with taking ARVs. If a patient is properly monitored by a doctor who knows a lot about ARV treatment, and if the patient has given informed consent, then I don't think there are any medical ethics issues either. There may be insurance/government issues around cost, but thats another problem entirely.
Every drug has risk. So little is known about our pathophysiology that we often have severe adverse reactions to drugs. I know I have. The CDC recognized this long ago with respect to CFS (but not ME, which was never discussed by them in this context so far as I know). So any one of those "safe" drugs we get prescribed could make us worse or kill us. Its all about managing risk/benefit ratios, where the risk and benefits are both informed guesses at best.
As to severity of illness, I have to regularly remind myself that the worst patients with ME are not represented on any forum - they have no voice, cannot even use a computer. Nobody who has not lived through that can possibly understand the pain and desperation. I only dimly understand it because at my worst I came close to that, but I have never fully experienced it.
The issue is not entirely about XMRV/HGRVs though. Many diseases have a suspected retroviral component. Sjogren's Syndrome is now suspected of being retroviral, and is known to co-occur with HIV and HTLV infection. Not all of these patients have HIV or HTLV though. Sjogren's Syndrome frequently co-occurs with ME. Why has there not been a systematic large scale study into reverse transciptase prevalence in ME patients? While the new paper on this is only easily available as an abstract you can see an old paper at:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC499817/pdf/jclinpath00252-0045.pdf
Sicca Syndrome, which is similar but lacks the antibodies found in autoimmune Sjogren's Syndrome, is also suspected of being retroviral in origin. However other viruses are also implicated, so I do wonder if the issue is not another virus that is opportunistic due to retroviral suppression of the immune system.
Society has an Euthanasia by Stealth approach to ME. Deny treatment, deny research funding, deny social support, label with pejoratives, treat patients in ways which aggravate their symptoms - and watch the suicide rate climb. It does not matter that this is not deliberately targeted at a specific group of very sick people for the most part, the effect is the same. This is a policy that drives us to suicide, and drives us to abject poverty where even minimal requirements of basic medical care and nutrition are impossible and so the normal death rate will climb. This is Euthanasia by Stealth.
It would be more honest for society to open up euthanasia clinics, at least that would minimize the pain and suffering. I would not agree with such a policy, but it would reduce the pain and suffering, and reveal the hypocrisy in how society treats us. Just to be clear though, while I think euthanasia should be a legal option, it should not be driven by societal imperatives.
There is very little epidemiological research into ME. There are a few studies that have looked at suicide rates (using various CFS criteria), and the results are all over the place. In Australia no study has looked at suicide, but one has looked at attempted suicide (many years ago) and reported that one in six long term CFS (not ME) patients had admitted to attempting suicide. The highest reported rate of suicide in the USA was about 20% of deaths, in a country in which ME patients are usually ignored. In the UK, where patients are usually mistreated, the highest reported suicide rate is over 30% if I recall correctly.
Usual medical care is a risk for anyone with ME. So is not taking ARVs. I strongly suspect that most cases of suicide in ME and CFS are labelled as caused by depression, the circumstances which drive us there are rarely examined. There is an old saying: "doctors bury their mistakes". What happens when those mistakes are society wide, and driven by economic and political imperatives? That is why I call it Euthanasia by Stealth. It is not genocide because there is no intent, but the result is still the same. The "system", ultimately, is the responsibility of everyone in the "system". The doctors have the biggest responsibility since society expects them to act to improve the health of everyone.
Let us not be fooled into thinking that taking ARVs is any kind of current issue. Clinical studies will move ahead if any retrovirus is strongly demonstrated to be involved in ME, and then we will have hard data. While I would not take ARVs as usual treatment, I am probably like many other patients in that I would be happy to take ARVs as part of a clinical trial. Taking ARVs is just one more risk: having ME is already high risk.
In the meantime we should respect the wishes of anyone who has made the choice to take ARVs. I know I respect them.
Bye
Alex