Sick and tired
By Michael Barrett Published 05 May 2011Yuppie flu: the psychosomatic excuse of indolent, middle-class skivers, or a real disease? Chronic fatigue syndrome, or myalgic encephalomyelitis (ME), continues to blight millions, but what is it?
Its symptoms always hinted at a viral cause, so when, a couple of years ago, Judy Mikovits of the Whittemore Peterson Institute reported a retrovirus (the family of viruses that causes Aids) as the cause, many sufferers were elated. Could antiretrovirals ameliorate ME?
Unfortunately, since then, others have struggled to find the so-called XMRV virus in ME sufferers and a spat has ensued. Mikovits has implied that others were incompetent in their testing and critics have dismissed her findings as a laboratory artefact.
Finding causes of diseases isn't easy. Poor old John Keats blamed tuberculosis on masturbation. For many years, a small group, including a Nobel Prize-winning scientist, denied the role of HIV in causing Aids. Some advised Thabo Mbeki as he failed to implement policies that could have slowed the spread of Aids in South Africa.
Many Aids-deniers abandoned their cause when evidence emerged that drugs targeted specifically at retroviruses slow the progression of Aids. So, should ME victims take antiretrovirals, in case Mikovits is right? Given that antiretrovirals are not without side effects, the answer, in the absence of compelling evidence, must be no.
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15 comments
This quote is from a recent USA Govt meeting
ME patients should have the same freedom to try medications that AIDS patients had in the early days. The AIDS patients became their own advocates because there was no one advocating for them. The same holds true for ME patients now. Patients are gravely ill, and they have the right to treatment. To say that they don’t—that’s what is medically indefensible
http://www.cfscentral.com/
Er.. .Keats *was* an excellent poet--but believing tuberculosis came from masturbations tells us he was missing a few things medically.Why are we aruguing about every little thing.Even this miniscule article is *not* bad, because there's information in it.
What we need though is *more* information and answers! Plus access to whatever meds may work and lessred tape and laws for heaven'ssake.
Sadly, the author seems to be unaware of the substantial literature linking M.E. and CFS to viral infections. Many cases begn with a case of re-activated EBV. All three of the beta herpesviruses have been shown to be related to CFS (Fukuda, 1994) - see, for example, the work of Jose Montoya at Stanford. (That would be HHV-6, Variant A; HHV-7; and cytomegalovirus.) Both longstanding research on M.E. in the UK, and more recent research by John Chia in L.A., have found evidence of active Coxsackie B infections (a polio-related virus). There is also evidence of immune defects (for example, very low natural killer cell function and the presence of the defective 37kDa Rnase-L). Some patients have improved on Valcyte (oral gancyclovir) or Vistide; others have not. Many have documented improvement on the experimental immune modulator Ampligen. So while anti-retrovirals may not be the answer (at the moment), there is absolutely no excuse for there not being active efforts to find antivirals and immune drugs that can tackle the documented biomedical abnormalities in clearly defined subsets of patients with M.E. (Ramsay and WHO); CFS (Fukuda 1994), or ME/CFS (Canadian 2003).
One XMRV researcher said at a conference recently
“if this were HIV it would be 1983”.
Funnily enough I became ill with ME around that time.
“Life as vegetable is no life at all” was one of the banners on a M.E. protest in Belgium recently.
Patients are in this life or death position because both the UK and the USA refused to fund research into the physical causes of ME for the last 30 years.
Although there were early signs of retro-viral activity in ME patients, the governments chose to fund millions of research into HIV/AIDS only.
We need clinical trials so that patients will at last have some answers, some hope and eventually some life. The paper linking XMRV to ME came out in 2009 but we are still waiting for a replication of the study and for treatment of the infected UK patients to begin.
How long are we expected to wait? Dying after 30/40 years of the disease is still dead. Severely affected people (like the recent cases of Lynn Gilderdale and Sophia Mirza) has finally brought it home to most “sceptics” that ME can be a life and death sentence.
ME patients got left behind in a time warp not of their making. I'm reminded of the HIV/AIDS book "And The Band Played On". Well, it is still playing. 1983 indeed.
I feel as though this article should be marked with 'this wiki entry is a stub'. It's so devoid of useful detail one wonders why it was written?
The picture is so much bigger - with so much science now focused on other likely potential viral and biological causes (mono, postpolio, lyme) couldn't the writer at least widen his lens and give the reader just a little more to enrich the debate?
Oh, yes, I forgot. It's not really a serious disease, it's 'just feeling a bit tired'. It couldn't possibly be in the blood supply.
No need to worry then.
Interesting study that allows us to know a little more about this disease that causes chronic pain that the suffering. As an example I want to tell them that my father is suffering from CFS and have to buy hydrocodone because this medication to control pain. This medicine her eat for 3 years and although it mentions Findrxonline which has side effects there are no problems because it is used properly.
Just a few points I'd like to clarify.
1. My scepticism isn't aimed at a possible viral cause for ME per se. I am reporting on the controversy surrounding the Mikovits study. Several other groups have concluded that XMRV does not correlate with ME and is therefore not responsible for the disease. (see, for an exampe, the weblink posted by Bryan above)
2. ME therefore remains a disease of unknown etiology (i.e. a cause is not known). Whether it would be ethical to conduct controlled clinical trials for anti-retroviral effect in light of the lack of evidence that it is a retrovirus that causes ME is debatable. It might be under debate by Ethics committees in one or more places even now, and sufferers might be enthusiastic to sign up for such trials. However, antiretrovirals can have side effects (see for example http://www.avert.org/aids-drug-side-effects.htm), so if ME has no relationship to a retroviral infection should sufferers be exposed to such a risk?
3. The point is that when we do not know the causes of a disease we are prone to speculate and risk taking actions that are not going to help. We need to find actual causes of disease. Sometimes it is not easy and the current controversy around XMRV demonstrates the challenges in identifying causes.
Since M.E. often occurs together with SLE, fibromyalgia, and other autoimmune diseases, I suspect a virus could trigger all of them. I have confirmed diagnoses of all three from multiple doctors. Yet there doesn't seem to be a lot of cross-syndrome research, does there? That's what I am waiting for. BTW, I had AI symptoms from childhood, but the M.E. and FMS occurred after exposure to M.E., blood transfusions, and a severe case of influenza. I feel I could be a research study in myself!
M.E. actually means "Inflammation of the brain". That is, in plain English, the meaning of Myalgic Encephalomyeltis.
Why therefore do newspapers (and the New Stateman) always say "chronic fatigue syndrome" as if it's a valid, alternative name for M.E? It isn't. CFS ( or CFS-forward slash-ME) is the term psychiatrists have made up to promote an imaginary illness which has nothing do with M.E.
"Poor old John Keats?" If this is the way you refer to one of the greatest poets in the English language, I don't imagine those who suffer ME/CFS stand much of a chance.
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