Just My Honest Opinion

We go through stages in life, ending in death. We see more sunrises and more sunsets, and the years behind us increase while the years in front of us decrease. Without our trying or ability to stop it, following a natural course, the experience of death becomes gradually more intimate until it brings the end to our own life.  In my case, the first was my great aunt, when I was about 9, who died from suicide. Although I went to the funeral, my youth and weather prevented me from getting a full funeral experience. It was a sunny day and my younger sister and I had matching made-by-hand green flowery pant suits with a halter top (think 1970s). I mostly played and giggled during the day, except after the funeral. Then a heaviness of heart, a cloud, came over me as I walked up the steps of my great-grandmother’s house. As time passed, the deaths came closer: my aunt’s close friend who died in a motorcycle accident, my grandmother’s close friend, my great-grandmother, my fath...

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...