Tuesday, January 7, 2014

Behind Closed Doors -- Occupy CFS

Note: Links to items mentioned are embedded in the webpage on the
Occupy CFS site.



Behind Closed Doors
January 6th, 2014
Jennie Spotila

There's an important meeting happening at NIH today and tomorrow, but
you probably know nothing about it. The secrecy of this meeting is
intentional, and the implications of decisions made at the meeting are
as far-reaching as the Institute of Medicine study. In fact, what I've
learned about the meeting may strike you as worse than the IOM study

January 6-7th is the first meeting of the Working Group for the
Pathways to Prevention Workshop on ME/CFS. You may be more familiar
with the old name for the meeting, the NIH Evidence-based Methodology
Workshop. At the May 2013 CFS Advisory Committee meeting, Dr. Susan
Maier clarified the purpose of the Workshop "is to identify
methodological and scientific weaknesses in a scientific area and move
the field forward through the unbiased and evidence-based assessment
of a very complex clinical issue."

Who Is On This Working Group?

Guess what? We don't know. 

<major snippage>

    - Finally, I can answer Question V myself: it's both. There are a
number of key clinician-researchers who maintain a clinical ME/CFS
practice and conduct research. For those individuals, their research
influences their clinical care and vice versa. But for the rest of the
world, we know that clinical care is completely divorced from ME/CFS research. Based on the horror stories we hear from patients, based on the dramatic under-diagnosis of the disease and simultaneous use of CFS as a wastebasket diagnosis, I think it is abundantly clear that research and clinical practice is separated by a great wall for most patients.

The Working Group's planning appears to be closed to the public, and
we have no input onto the final questions. We wouldn't even have this
draft list if I had not managed to file a successful FOIA request. The
anonymous Working Group will finalize the questions, and these will be
posted publicly – although we have no timeline for that.

Non-Experts By Design

Supposedly, the Working Group is made up of ME/CFS experts. That's the
impression Dr. Maier gave at the May 2013 meeting, and by the P2P
website. But the P2P Panel is a completely different story.
Panelists can be nominated by members of the Working Group BUT there
are significant restrictions on their expertise. Specifically, the

    - May be knowledgeable about the general topic under
consideration, but must not have published on or have a
publicly-stated opinion on the topic.
    - Must not have intellectual conflicts, such as participation in
statements by professional societies or participation in advocacy
groups on the topic.
    - Must not hold financial or career (research) interests in the
workshop topic.

Let's be very clear about what this means. If someone has ever published on or made a public statement about the diagnosis and treatment of ME/CFS, he/she is disqualified. If someone has
participated in statements from professional societies or participated
in advocacy groups, he/she is disqualified. If someone has a financial
or research interest in the diagnosis and treatment of ME/CFS, he/she
is disqualified. Furthermore, there is no public comment period on the
panel roster like there was for the IOM panel. In fact, it's not even
clear to me how far in advance we will know who has been appointed to
the panel.

If the IOM process makes you mad, then this process should make you furious. There will be no ME/CFS experts on the panel that writes the Workshop report identifying methodological and scientific weakness in
ME/CFS, suggesting research needs, and providing "an unbiased,
evidence-based assessment of a complex public health issue." The only
involvement of experts will be through the Working Group and through
the presentations made at the Workshop. I only see one upside to this
arrangement: anyone who has been associated with the psychogenic model
of ME/CFS will also be excluded.

If the P2P panel
is comprised of people with little ME/CFS knowledge and possibly
negative preconceptions, and the Workshop does not include significant
participation from ME/CFS patients and advocates, it seems unlikely
that the best results will be achieved. Based on our decades of
experience with misinformed scientists, clinicians, and policy makers,
it is very hard to trust in such a process.

So if you are worried about the lack of ME/CFS experts on the IOM
panel, or if you think that the public will not have a sufficient
opportunity to participate in the IOM process, pay attention! The NIH
P2P process looks even worse. We cannot lose sight of the forest for
the trees, and IOM is not the only moving piece on this chessboard.

What can we do? I believe that advocates must demand more information
about the P2P Workshop, and must demand meaningful opportunities to
participate. The planning and execution of the Workshop should be
transparent if it is to have any legitimacy in the advocacy community.
I urge you to participate in both the IOM and P2P processes at every
opportunity – ask questions, provide input, and present a united front
based on the truths we know about ME/CFS. We cannot wait until the end
of the P2P process to make our voices heard, especially since this
process will provide input into the IOM study.

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