|Beam me up, Scottie. There's no intelligent life down here.|
If there is anybody who still believes that the IOM knows what it's doing, the list of speakers for that meeting should leave them scratching their heads.
The inclusion of Megan Arroll to speak about cognitive problems is not just baffling, it is mind-boggling. Megan works for the Optimum Health Clinic, which offers the following service to patients with ME/CFS:
"The clinic offers a 3-month intervention which consists of a combination of neuro-linguistic programming (NLP), emotional freedom technique (EFT), life coaching and hypnotherapy/self-hypnosis constructed in a manner specific to the needs of those with ME/CFS. The primary aim of this approach is to reduce the anxiety that is associated with having a debilitating and unpredictable condition, improve emotional well-being and help individuals slowly manage and increase their activity within their own limits (ie, pacing)."It goes without saying that the clinic claims a significant success rate, as all such clinics do. In fact, Megan published a paper about the "improvement" in ME patients after participating in their program. (Read the paper here.) The basic premise behind OHS' approach, and indeed all "treatment programs" that utilize NLP, EFT, CBT, the Lightning Process, and so on, is that ME/CFS is caused by stress, therefore it can be treated by "life coaching." (Note: If stress caused ME/CFS, everyone on the planet would have it.)
I can't help but wonder, if the IOM committee were convened to review case definitions of Parkinson's disease, would they invite someone with training in neuro-linguistic programming? And why stop at NLP practitioners? There are some great stress reduction techniques out there. How about past-life regression? (I've heard past lives can wreak havoc on cognitive function.) Chakra balancing? Astral projection? If the IOM committee wants to consider every angle, the sky's the limit.
The inclusion of Akifumi Kishi is also puzzling. Akifumi Kishi is a Postdoctoral Fellow in the Division of Pulmonary, Critical Care and Sleep Medicine at the NYU School of Medicine. He has published two papers with Benjamin Natelson about sleep disturbance in people with ME/CFS and/or fibromyalgia. He is most certainly not an expert on ME/CFS, or on sleep disturbance in this patient group. The best Kishi can do is present the results of the two studies he published, neither of which was particularly well designed. (He did not so much as mention the alpha wave disruption in ME/CFS found by Moldofsky, an anomaly associated with all autoimmune diseases.)
Leonard Jason will be speaking on case definitions and diagnosis. They could not have chosen a better person to cover this topic. Nevertheless, the expression "casting pearls before swine" comes to mind. If the IOM committee can't tell the difference between the contributions of a psychologist who thinks ME/CFS is stress-induced and an epidemiologist with Jason's long experience, then how will the committee make a distinction between people who think "It's all in their heads" and researchers who know that numerous immune, neurological and metabolic abnormalities drive the disease?
The answer is that it won't. The whole idea behind the IOM committee and the P2P panel is that they will approach this complex disease tabula rasa - without an idea in their heads, which means giving equal weight to all theories, no matter how unfounded they may be.
Nothing could be more dangerous for patients with ME/CFS than people with blank slates for brains.
Let's write on those slates. Send an email to the IOM!
But can you boycott the IOM process and still send an email?
Of course! A boycott doesn't work if you don't let people know you are boycotting them. (Remember all those "Boycott Grapes" bumper stickers?)
Tell the committee that you do not support the IOM process. Tell them to adopt the CCC and tell them to change the name CFS to Myalgic Encephalomyelitis.
Go here to read Eileen Holderman's response to the committee's invitation.
Go here for the questions to be addressed by this meeting's invitees. Feel free to address them!
Everything we say becomes part of public record, so let's flood the IOM mailbox with what should be done.
Use this address after April 23