Joe Landson delivered these comments at the CFS Advisory Committee meeting today. He has kindly given me permission to post them in their entirety here.
Testimony of Joseph D. Landson
June 2014 Chronic Fatigue Syndrome Advisory Committee
First, credit where credit is due. Thanks to the Social Security Administration (SSA) for its recent revision of ME/CFS disability guidelines. Thanks to the Food and Drug Administration (FDA) for its efforts to ease the approval path for prospective ME/CFS treatments.
So much for the good news; now for the bad. The contradiction in the Pathways to Prevention (P2P) program is so perverted, that only Donald Rumsfeld could appreciate it.
Let me explain. Back in September 2012, a group of patients met with a National Institutes of Health (NIH) official named Dr. Michael Gottesman. Patients asked him why ME/CFS had been largely ignored for over two decades. Dr. Gottesman replied this was due to a lack of concrete scientific, clinical, medical findings and published papers. In other words, no evidence, no support. The thousands of published journal articles apparently didn’t interest him.
Flash forward to today. Recently, the Agency for Healthcare Research and Quality (AHRQ) revealed the evidence review plan for the NIH’s P2P process for ME/CFS.
But any evidence review begs the question: What evidence is the P2P process reviewing? Is it reviewing the evidence that Dr. Gottesman implied doesn’t exist? In that case Dr. Gottesman seems to have spoken in error. Or, is Dr. Gottesman correct, and there really is no evidence to review? In that case, what on Earth is P2P doing?
If I could ask Donald Rumsfeld, maybe he’d say the purpose of P2P is to find an absence of evidence, a rationale to continue ignoring us. Since we mere patients are almost completely locked out of P2P, who’s to say? We can say what we do see: evidence of absence.
There is an absence of any serious attempt to frame ME/CFS as the systemic biological illness that we experience it to be. There is an absence of any effort to re-imagine a so-called empirical approach in government research, an approach that has demonstrably failed even to measure the illness reliably, let alone do anything to treat it. In P2P, there is an absence of any serious attempt to engage patients in a desperately needed rethinking of the research approach to this illness.
I urge that P2P either be opened up, or discontinued.
DIScontinue P2P–DIScontinue IOM.
The biological truths to ME/CFS — the roots of these truths have been known for decades, yes, by TPTB — YET, these biological truths re ME/CFS have been ignored, disregarded — made to disappear / covered up / hidden — buried, ‘absent.’
I.E.–Persons with ME/CFS–millions of us–buried, isolated–‘absent’ from society in ALL aspects of life. A travesty !! HHS/NIH/CDC, you are responsible for this travesty aimed to HARM citizens with ME/CFS. 🙁
This is UNconscionable and OUTrageous–a crime against humanity! HHS/NIH/CDC–you ARE responsible.
Well said!! Thank you so much, Joe.
Thanks, Joe. Well said. Glad you commented.
I’d like to know what all of these people are doing about the existing evidence of changes in gene expression in people with ME/CFS after exercise, of changes in brain cells after exercise, of the new evidence of low-level encephalitis in people with our disease, etc., etc. Do they just put their heads in the sand and not read any of these studies or news about them? Or do they read them and just ignore them altogether?
This is a Catch-22. If the NIH would just fund more of the right type of research and put money and scientists into it, there would be more evidence. But they won’t fund it without the evidence. Aauugh!
We just need to keep on advocating, emailing, tweeting — and, if we could, demonstrating.
Sticking this here because it’s current and relates to P2P
“A THIRD of the people who believe they have Chronic Fatigue Syndrome, or ME, may be suffering from a treatable illness, a professor claims.”
http://forums.phoenixrising.me/index.php?threads/daily-telegraph-a-third-of-me-patients-could-be-treated-prof-julia-newton-front-page.30892/#post-472953
It’s an opinion only – research is this: http://bmjopen.bmj.com/content/4/6/e004127.abstract which only deals with POTS, however if there is such a level of misdiagnosis (at least one previous paper showed a range of confused diagnoses) then it makes the P2P process doubly difficult.
Thank you, Mr. Landson. Thank you, Jennie.
Thank you, Joe. I always enjoy the way you inject levity into serious and insightful commentary.