Wednesday, April 9, 2014

IOM Posts Agenda for May 5 Meeting, Raising at Least One and a Half of My Eyebrows

Beam me up, Scottie. There's no intelligent life down here.
The IOM has posted its agenda for the public meeting to be held on May 5, 2014. (You can view the agenda 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 before April 23 (These comments will be read by the committee before the meeting.)

Use this address after April 23


  1. Another excellent post, Erica. Thank you! Megan Arroll's single paper on cognitive and memory failures in people with ME/CFS, just published in February 2014, appears to have numerous problems. The subjects labelled as having ME/CFS were self selected, i.e., they were people who signed up to be in an ME/CFS research study. It appears no attempt was made to determine if these subjects met any standard case definition criteria, whatsoever. There is no way to determine what medical condition the "ME/CFS" subjects had, if any. There also were no controls. The section on study limitations says:

    "Since the participants with ME/CFS were a self-selected group, that is, they had previously expressed their desire to take part in ME/CFS research, this group may not be representative of all people with ME/CFS."

    The "ME/CFS" subjects may not be representative of people with ME/CFS? Selecting a sample representative of the population studied is one of the basics of research. What is the point of the study? The memory and cognitive failures were all self reported on mailed questionnaires. There was no standard laboratory cognitive or memory testing done. If a subject has an impaired memory, isn't it possible that he or she might not recall or judge accurately how their memory was functioning? It also seems that a number of the subjects failed to mail back their questionnaires -- not surprising in memory and cognitive failure research. That may have selected out the subjects with the most severe cognitive failures and the poorest memories, biasing the study.

    This is the neurocognitive expert the IOM, or their ME/CFS panel, has selected to fly in from London to inform the panel on cognitive impairment in ME and CFS. One problematic paper on the subject with poor methodology seems to be her only qualification. Did anyone even look at the paper?

    1. Just a weak study by her, no controls for example. "Conclusions This study provides early evidence that psychological, nutritional and combined techniques for the treatment of ME/CFS may influence symptomatology, fatigue, function and perceived control. However, these results must be viewed with caution as the allocation to groups was not randomised, there was no control group and the study suffered from high drop-out rates."

      I suppose another half-assed psychological study doesn't mean the sky is falling, there have already been perhaps hundreds of them so far. It is outrageous though that THESE two are two of the very few 'experts' they have chosen to invite to speak; flying in from England a third-rate "CFS" dilettante.

      Thanks Jerry and Erica for looking into these guys; I am sick of the fact that we constantly have to watch like hawks all of the charlatans and incompetent doctors in "CFS", it's like dredging through manure. Shame on them, get need to get there act together yesterday, or rather 30 years ago.

      F*** the IoM. They don't care a bit about scientific truth or the health of millions of disabled.

  2. Erica, thanks for this.

    And Jerry, this is addressed to you as well.

    A friend suggested this, admittedly, baroque scenario: the IOM felt obliged to "hear"the psychogenic view, so rather than go with one of the infernal triad, Wessely, White, or Sharpe, or even Chalder or Crawley, an act which would have drawn down the wrath of patients, they chose Optimum, ensuring that what would have been calls to the barricades becomes snorts of scorn and bemusement. It's a kind of backfire, allowing the psychogenic view to be represented, while minimizing patient anger.

    I said it was baroque...

    1. This comment has been removed by the author.

    2. Positively Byzantine, akrasia. But do astronomers invite astrologers to their meetings?

  3. Excellent post as always Erica! There is no intelligent life down here. I fear for this process and hope for the best. Maybe taking a baseball bat to them would work, but I doubt it. Take care sweetie!

  4. Beam me up Skotty!!!! There is no intelligent life at the IOM!!!!!

  5. Lennie Jason's paper on ME versus CFS

  6. Conclusion: This study illustrated that symptomatology in CFS can be divided into
    distinct categories that concur with the most recent guidelines for the condition.
    Additionally, the illness can be separated into discrete sub-groups, although these
    groupings are linked to overall severity, rather than symptom types.


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