By Jeff Vanderbilt

From Winter 2014-2015 Forum

They’ve been doing it for decades and continue to do it today. Don’t be fooled by our own United States government. They are still lying to us and pretending to care about us to this very day. One easy way to continue to fool the public is with the federal Chronic Fatigue Syndrome Advisory Committee (CFSAC). By the time you read this, there will already have been another meeting that is scheduled for December 3rd. The opening remarks and all the regular stuff will be presented with the nonvoting federal committee members seeming to care. They don’t. They never have. If they did, the name of this illness would have been changed years ago.

Some patients who have surgery scheduled asked if they could offer their blood or similar things to our blood repository. What? The National CFIDS Foundation has a blood bank? Yes, for nearly two decades! And, yes, we were the very first to have one despite others that have come into existence quite recently with a huge promotion on how it would help. In fact, the CFSAC scheduled Dr. Faith Newton to talk about the “Solve ME/CFS Biobank”. Her particular Ph.D. is for “education” and, even though I’m writing this in November, weeks before the CFSAC meeting, I can assure you that she won’t mention the “biobank” that has been available for so long. She will be speaking on behalf of the new “Solve ME/CFS Initiative” along with their new CEO, Carol Head, and their old director for “science”, who formally worked with the CDC, Susanne Vernon. I’m willing to bet my life that the existing “biobank” of the NCF won’t be mentioned.

And there’s a lot more that will never be mentioned by the CFSAC. After all, many years ago the patient community wanted a name change. There was a committee named that wanted to report on their results that suggested not only a name change but very careful recognition of subgroups. In fact, the CFSAC stated, “The patient community has been injured by disrespect, apathy and ignorance of the medical community and this, in part, has been due to the inappropriate name of the illness." The new chairman of the CFSAC in 2004 was David S. Bell, M.D. who admittedly had this illness himself. That was just before he told all his patients that he would be retiring and they must find another physician. But, as the NCF found out, he did not retire but merely began treating Gulf War Illness and is doing so to this day. For some reason, Dr. Bell did not find “CFS” to be progressive as all others did! Hmmmmmm… His sister was such a severe patient that, nearly two decades ago she was wheelchair-bound. She isn’t today! Hmmmmmm…

But let’s not get off track. The old CFIDS Association of America said they supported the statement about the name of the illness. Their president, Kim Kenny (who is now Kim McCleary) signed a letter in 2003 that was to the CFSAC asking them for support for a name change. Now, it’s nearly 2015 and the CFIDS Association has changed their name to “ME/ CFS” which is the same name the government began using to placate the patient community. But, as others remind us, our government took away the diagnostic code for myalgic encephalomyelitis so long ago so ME/CFS means merely that derogatory name the CDC gave to us via their committee: CFS. An online group actually requested patients to request the CAA to remove their false representation about their efforts to change the name from their site on the web. In fact, this request, from a group of patients that had formed to advocate, “ResAct”, said it was “time for some accountability and honesty.” And now we’re close to 2015 and the old CAA has just adopted a new name for their group that includes “CFS” and the old “immune dysfunction” is left lying in their discarded rubble of the past.

The Memorial List that is still on the website of the NCF has hundreds of people who died of the progressive immune dysfunction that is part of Chronic Fatigue Immune Dysfunction. They didn’t die ten to twenty years or more before they should have because they were tired. But our own CFSAC will go on trying to make you believe that there is scientific progress. Well, they’re right but the progress has been funded by the NCF and has proven beyond any doubt that immune dysfunction is a part of this. But the CFSAC will never mention the facts but merely pretend they care. Don’t believe them. The cause finally that the NCF announced years ago is why no government in the world wants to admit any progress. We’re sick and suffering because of what these governments have done to us.

Jeff lives in New England