There have been some major events in the ME/CFS world over the last couple of weeks. There is overwhelming evidence of the existence of a virus-XMRV-in ME/CFS patients. This is incredibly significant for the ME community, who have historically faced stigma around ME not being a 'real' illness. I really wanted to understand everything that was going on around these findings, but my ME brain just can't cope with reading the information. Like many people with ME, I really struggle with reading and lengthy scientific articles are way out of my energy reach! So my lovely Facebook friend from The ME Chat Room had an idea that we could collaborate on a piece for my blog. Basically she did all the hard work and summarised the science bit, then I turned it into something blog friendly. So for those of you who would also like to understand what is going on but don't have the energy to read all the information that is out there, here's your beginners guide to XMRV!
What is XMRV?
Attempts at replication studies were subsequently conducted in the UK and in Holland, but these studies found no evidence of XMRV. However, it turned out that the same testing protocols that were used in the original test were not used, casting doubt on their findings.
Further positive results
The Centre for Disease Control (CDC) in the USA also conducted a study, raising hope for clarity in the ME community. In the mean time, a leak by the Dutch magazine Ortho showed positive results from another study. This study, carried out by the US National Institute of Health (NIH) and the Federal Drugs Agency (FDA), had also conducted a replication study and their findings were consistent with Lombardi et al. They found XMRV in 80% of CFS samples and in 7% of healthy controls. There was a buzz of excitement flowing through the ME/CFS community around the world at this news. Not because people want this retrovirus, but because people want answers about an illness that has 'stolen' their lives from them, which has so many unknowns and very limited treatment options.
Press Embargo
However, getting to see the CDC results and really understanding the full picture was not that easy. The American Government placed an embargo on the publication of the CDC, NIH and FDA papers. (Yes, I know, it is starting to sound like a conspiracy thriller movie!) The ME community was up in arms and for a population with such limited energy, there has been some amazing campaigning efforts to get these results published. (I salute you fellow ME people for using your VERY precious energy for this activity.) It turned out that the CDC found no evidence of XMRV in ME patients but again questions were raised about the testing protocols used.
Why all the fuss?
This is not the first time that biomedical research relating to ME/CFS seems to have been withheld. Over the years, thousands of scientific papers have been produced, showing various aspects of the biology of ME/CFS and the various mechanisms at work in the body.
ME has been classified by the WHO, The World Health Organisation (rather than the legendary rock band..) as a disease of the nervous system-neurological-since 1969. CFS is a label that was invented in the US in the 1980s, and then adopted in the UK, which is taken to be another name for ME and was also defined to include other illnesses that have fatigue as a feature, including depressive illnesses and anxiety disorders. This gave the green light for a powerful group of psychiatrists to claim ME, which has played a significant role in ME/CFS not being seen as a 'real' illness. Apparently, I recline gracefully on the sofa all day because I have unhelpful illness 'beliefs'-trust me if it was that simple I would have fixed it by now!
The media portrayal of ME/CFS as a psychological illness
ME/CFS is frequently presented in mainstream media as a psychological illness. In the 1980s it was dubbed, ‘yuppie flu’-considered to be as a result of burn-out in the young and upwardly mobile, whereas in fact ME affects people from all walks of life and ages. The recent news about the CDC and NIH/FDA studies had not been reported in the press at all, until the ME community got on the case and a somewhat inaccurate piece appeared in The Independent. Interestingly, ME/CFS 'expert' Professor Simon Wessely, a psychiatrist, sits on the panel of The Media Science Centre, that the press looks to for expert advice and information on matters of public interest relating to Science and Health. So any news or information about ME/CFS would be taken to him for his expert opinion.
The role of psychiatrists in ME is extremely controversial. Alongside their involvement in defining ME and the Media Science Centre, as already mentioned, they are represented on the Medical Research Council; have been instrumental in the development of the NICE guidelines that recommend only psych-based 'treatment' options for ME/CFS; and advise the mammoth health insurance industry, including ATOS, which deals with disability benefits and incapacity claims on behalf of the government, which are notoriously hard for people with ME/CFS and other 'invisible' diseases to get. (So the conspiracy thriller continues!)
Living with a chronic illness is extremely challenging in itself, without the added stress of being treated like it is not a 'real' illness. Not to mention the implications of all of this for treatment options. These findings are a real breakthrough for people with ME/CFS and if accepted, will force the medical world to acknowledge ME as a neurological condition. There are still a lot of unanswered questions, which will hopefully become clearer in time. We have been told that the relevant science papers will be published over the next couple of weeks.
