Just My Honest Opinion

It’s been a tough week in ME/CFS land. Researcher / institute divorce and allegations of researcher fraud have left many patients disillusioned. I’ve seen many of my ME/CFS peers ask, “What do we do now?” Others have said they are staying away from social media, can’t take any more bad news. For me, the WPI / Mikovitz fall out was not shocking as the signs were on the wall, along with rumors passed in private conversations.  Allegations of fraud were surprising to me, but are far from confirmed at this point. I hope two things: that the Ian Lipkin study into XMRV survives and comes to completion and that patients who thought they had a savior do not lose hope and make decisions which cannot be reversed.  I have always advocated that all biomedical research is worthy of support and the demands of loyalty to one researcher are harmful. Now, I hope recent developments will win more patients over to this thinking.  The researchers must compete for government funding and...

ME/CFS patients find themselves in a deep hole of darkness and despair. Trying to crawl out of that hole requires great courage in the face of ignorance, bias and worst, apathy. Imagine decades of spooning away the dirt to make progress while people pass over the hole concerned only with their own schedules and recreation. Oh, occasionally, a passersby will say, "So sorry to see you in that hole." And then to add insult to injury, literally, a person will say, "How did you get in that hole? What did you do? Why can't you get out?" It's even worse when someone says, "Maybe if I pour some dirt on you, you will get out of the hole." The frustration, the fear, the anger builds and builds. And there the ME/CFS person is, still digging away at the hole, trying to get out. Many children who suffer from neglect and abuse will channel that anger into destructive, unproductive behavior. They do things that hurt themselves as much as the object of their a...

In 2009, Whittemore Peterson Institute scientists discovered a significant link between a newly-found retrovirus, xenotropic murine leukemia virus-related virus (XMRV), and the neuroimmune disease, ME/CFS. Their ground-breaking discovery was published in the world-renowned journal Science, on October 8, 2010. http://www.wpinstitute.org /xmrv/docs/wpi_pressrel_10 0809.pdf http://www.sciencemag.org/ content/326/5952/585.abstr act?keytype=ref&siteid=sci &ijkey=m3wzKT4yJqEyk This discovery brought renewed interest to the much-maligned disease and a flurry of research was conducted in order to confirm the link. On August 23rd 2010, US government scientists validated the link, announcing they had found an association between a family of infectious murine leukaemia viruses and ME/CFS. They reported that 87% of those sampled carried at least one of the retroviruses, along with 7% (1 in 14) of the healthy controls. http://www.rescindinc.org/ fdanihpressconf.mp3 ht...