CFSCC, or the Chronic Fatigue Syndrome Coordinating Committee, existed through from 1996-2001; CFSAC, the Chronic Fatigue Syndrome Advisory Committee, replaced CFSCC in 2003. The purpose of each was slightly different - one was supposed to coordinate activities; the other only to advise the Secretary of the Department of Health and Human Services, or HHS, on how to approach the disease. Since all CFSAC can do is advise, the committee sends recommendations to the Secretary of HHS. There has been little response. Consequently, and without involvement from the public, the committee has issued a new list of the recommendations they want to receive the highest priority. Jennifer's blog essay, "Highest Priority," discusses both the new list and the process by which it came about.
The committee is the only interaction Washington has with patients with Myalgic Encephalomyelitis (M.E.), or those diagnosed with the insipidly named Chronic Fatigue Syndrome (CFS). Because I live 90 minutes north of Washington by Amtrak, I have attended all but a couple of meetings of both CFSCC and CFSAC. It can be an exercise in frustration.
The biggest difference between the two isn't really that one coordinated and the other advises - the first never did much anyway. Rather, I find it very problematic that when it was CFSCC, back in the 1990s, there was a microphone at the head of the aisle and we were permitted to line up and ask questions – we, the public, the patients, parents, doctors. We could point out an obvious contradiction in a report by one of the ex officio members (representatives from the health agencies – CDC, NIH, FDA, HRSA …) and ask about information that was missing from their report, or simply wrong. Without that privilege – which is a standard right in all other public meetings, just not for us – the reports from the agencies since 2003 have been sawdust, bland comments with little meaning and sometimes blushingly misleading.
For example, the essential problem with NIH is that they allocate less than $6 per year per patient to this disease (compared to $500 per patient per year for MS). So a meeting never passes without NIH blaming the absence of funding for our disease on the researchers – saying they don’t fill out funding requests effectively, but assuring us that they’ll hold seminars to fix that. The statement is not only insulting, it’s not really true, because most “CFS” researchers have had no trouble getting funding for something other than CFS. They suddenly become all thumbs when it comes to our disease? Sounds like the fault lies within NIH, not the researchers.
But there's no one to say that.
Without the ability to ask questions, we can’t verbalized a misstatement when we catch one, or ask a meaningful question and get it answered. I would really like to know why it is okay for CDC’s website to omit information about the large body of research into CFS regarding biomarkers (such as cytokine patterns); immune defects (particularly natural killer cell abnormalities and the 37kDa Rnase-L); viruses (particularly EBV, CMV, HHV-6A, and Coxsackie); cardiac abnormalities; hypothyroidism and hypocortisolism; the VO2 MAX stress test. The list goes on, but the bottom line is this: the first statement on CDC's website, that little is known about this disease, is simply not true. After 25 years of research NOT involving CBT or GET, you’d think some of it should find its way unto that website.
Or the website should not exist.
They tell us our moment for commenting is during the five minutes they give us to testify – which may occur before the ex officio testimony, in which case you cannot comment at all. But commenting is not the same as being able to communicate publicly with the ex officio members. I have testified innumerable times about CDC, and once we shifted to the CFSAC format, my comments were simply ignored by Dr. Reeves and Dr. Unger. Pat Fero has gone to a great deal of trouble to research the paltry funds given out by NIH and testifies to that – then the NIH representative will stand up and say the same thing as always, with no reference to Pat’s findings.
It has become a comedy of the absurd – we exist in parallel universes, with a glass wall between the committee and the public. I used to pass notes to friendly members of the committee who would then ask my question for me, but now they are actually FORBIDDEN to do that!
Saddest of all would be the seriously ill patient, earnestly testifying to the ravages of the disease, speaking slowly and haltingly because of neurological dysfunction, being cut off at precisely 5 minutes - so the committee can spend 25 minutes chatting about whether to go to lunch yet.
And yet, CFSAC did pretty well, because public members of the committee such as Lenny Jason and David Bell worked hard to get serious recommendations up to the Secretary of HHS. It was frustrating that the only response we ever got from the Secretary, back in the last administration, was to have each ex officio member recite uncritically how their agency was responding to the public’s wishes – the same silly parade as before.
Attending these meetings is not unlike the scene in “Animal House” where the undesirable at an open fraternity rush party keeps getting sent back to the same spot with the rest of the “undesirables”.
Now we’ve lost the one thing we had in our favor at CFSAC – committee membership who actually wanted to change things. For that reason, it is disconcerting that they have gone back to re-prioritize the previous recommendations. The first recommendations in 2004 were just fine. Start there and demand answers, then move on to the next ones.
My mother – then in her mid-70s and in much better health than I have been – took me in my wheelchair to the first CFSCC meeting. I remember my mother listening for a few minutes to Bill Reeves say that the one thing we DID know about CFS was that it was not caused by a viral infection. Mom looked down at the Table of Contents for the meeting. “Who is this guy?” she asked. “It says here someone is supposed to speak from the CDC’s department of viruses and exanthums [diseases with pussy sores].” That’s right, I answered. That’s who’s talking. “But he is saying that this disease is basically psychological.” Yep. “Then why is he still in charge of it?”
Mom had not listened to an ex officio report for five minutes before immediately gerting to the crux of the matter, the problem that haunts us everywhere in the US federal government. Here are a bunch of guys taking about psychiatric causation and feel-good solutions – and every one of them is an expert in something OTHER THAN PSYCHIATRY. (At NIH we were housed for years within NIAID, the National Institute for Allergies and Infectious Diseases, where virologist Steve Straus prided himself on being able to prove CFS was not related to viruses.) What passes for “science” at HHS with regard to our disease is what I can only call psychobabble. It’s not even serious psychiatry. [I don't think a good psychiatrist would entertain the faux psychiatric theories put forward about our disease for an instant.] And when it comes to psychiatry, these heads of agencies are as unqualified as I would be – it is not and has never been their specialty. They are rank amateurs.
We are hidden in plain sight. At least for a while, we had a committee willing to fight that injustice. But the best way would be to once again allow the public REAL access to the agencies.
We need the right to ask questions ourselves of the agency representatives in public. We need the right to be able to point out discrepancies. We need the right to get ANSWERS.
And the questioning can start with why the government ignores all the existing evidence into pathogens, biomarkers, and objectively defined abnormalities, substituting instead popular psychiatry.