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By "Mike" Wilson

From Spring 2013 Forum

Many years ago, about 6 years after I had been diagnosed with M.E. because the CDC hadn't yet taken that term off of their diagnostic list, I was visiting an old friend to attend a conference of the Amercian Association of Chronic Fatigue Syndrome conference. It seemed, at that time, to be run by a lot of medical physicians who were familiar with the illness that the National CFDIS Foundation (NCF) refers to as CFIDS/ME. They really seemed to be trying hard to find answers. Forward to 2012 when the renamed International Association added ME to their title (IACFS/ME) announced that they would no longer have a newletter but, in early 2013, would be debuting their first medical journal about "fatigue". Huh? What happened to them? What happened to the group that was so intent on finding answers? Had they found answers but then were unwilling or not permitted in some way to share their knowledge? Why would they have a journal on "fatigue" when so many had shared their own disdain for the very same insulting term years ago at that first conference I attended?

It turned out, I wasn't the only one to have that reaction as the IACFS's president, a psychologist named Fred Freidberg, admitted they had gotten some feedback on the chosen journal's name yet he was sure they would change their mind once it was published. In January of 2013, Fred sent out an email to many entitled, "Inaugural Issue of Fatigue: Biomedicine, Health and Behavior: Now Online!" There were a couple of articles from it online with a chance to pay and get the entire issue. I didn't bite. About a week later, they put the entire issue online free! Guess I wasn't the only one that didn't take the earlier bait.

There were seven papers along with a wordy greeting from Fred that, essentially, said nothing. The articles were, indeed, not about CFS or CFIDS or even ME but were about "fatigue". One of them was about how to manage occupational fatigue for workers. Another was about cancer fatigue yet it didn't mention "CFS". The only one remotely about CFIDS/ME was a mere theory and the theory mentioned wasn't even a new one! If they're going to put out a journal on fatigue, why doesn't the IACFS/ME change their name to the International Association for Fatigue so, like so many did when that infamous CDC committee changed the name to chronic fatigue syndrome, others don't confuse "chronic fatigue" or even plain "fatigue" with chronic fatigue syndrome? Isn't that why Dr. Alexis Shelakov suggested that the patient community call it CFIDS since the immune dysfunction had already been proven at the time? Isn't that the reason why the few members, Drs. Shelakov, J. Gordon Parish and Byron Hyde. of that committee who actually had seen one person suffering from ME refused to accept the silly name of CFS and, instead, exited that CDC committee?

Who hijacked the former AACFS? Advocates who don't seem to know very much complain about the miniscule amount of money spent on CFIDS/ME at our own NIH in comparison to so many other illnesses. Those are the ones that cheer on the researchers who get some funding for their work on CFS but, if they looked at bit more closely, they'd see that the very first one that managed to get some monetary help from the NIH for CFS was Nancy Klimas, M.D. and that her first project that was accepted for funding was on cognitive behavioral therapy! They'd also find many other CFS studies that wasted the money on silly things such as one that forced rats to keep swimming until they finally drowned of their "fatigue"! The NIH didn't want to find out any real scientific facts about CFS and the CDC was walking down the same road since they took over from the NIH. But why has the IACFS/ME joined them?

The author lives in the mid-West and supplied written material to back up all the facts in this article. He asked that his first name be changed for this article.

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