P2P workshops are designed for topics that “are generally not controversial” – P2P website
Mary Dimmock and Jennie Spotila have collaborated on a call to request Director Francis Collins to cancel the P2P Workshop. Mary’s background is in the pharmaceutical industry, Jennie was a lawyer. Throw an ex-pharma professional and a ex-lawyer together and you get an impressive thirty plus page document and call to action (see below).
Here are some of the factors behind the request to cancel the Workshop.
Redundancy, Inefficiency and Confusion
After years of the feds ignoring the definition problem there are now two federal efforts (IOM, P2P) examining it. That’s a recipe for confusion. What if these two groups, one of which contains ME/CFS experts and one which does not, comes to different conclusions – as they very well may given their different backgrounds? What then? A third effort?
Lack of Collaboration with the ME/CFS community
Enough changes have been made to P2P to question whether those leading it are up to the task. Hopefully the NIH will at some point get that the ME/CFS community is there to provide knowledge that NIH officials, none of which are tasked with working on ME/CFS full-time, simply don’t have.
Narrowing the Emphasis and then Broadening It
The entire thrust of ME/CFS advocacy regarding the definition has been to make it more precise. Those efforts were seemingly overturned when the draft agenda obtained by Jennie suggested the Workshop was taking two steps and several decades back with it’s focus on “Overwhelming fatigue and malaise as a public health problem”.
The P2P’s focus does explicitly include contrasting different ME/CFS definitions but the wording of the draft document is at the least disturbing and it’s too broad for the panel to grapple with. Doing so would require extending it’s reach into disorders like multiple sclerosis, primary biliary cirrhosis, hepatitis (under treatment), neurological disorders.
This group had enough work to do without broadening their focus.
Research Gaps Already Identified – Recreating the Wheel Again
The NIH’s ‘State of the Knowledge Workshop’ was produced to identify gaps in research – and it did, yet it’s not been used. The NIH produced the Workshop – now they should use it.
ME/CFS Experts Needed …. For Now
Jennie and Mary make a strong argument that given the controversial nature of ME/CFS that ME/CFS experts should always be heavily involved in efforts like this.
The P2P’s own website suggests the P2P – which by design contains no ME/CFS experts – should not be involved. It states that the workshops are designed for topics that “are generally not controversial” yet here they are taking on a controversial topic in a controversial disease (???).
It’s an impressive document but there are some things in the document I don’t agree with or don’t understand.
Objection to the Change from Determining How CFS and ME are Different to Comparing the Different Definitions for ME/CFS
Jennie and Mary believe the change from the original P2P emphasis determining how CFS and ME are different to examining how the different ME/CFS diagnoses differ from each other is detrimental. I believe that that original emphasis displayed an effort that was bound to go sideways.
Explicitly comparing CFS and ME seems intuitively attractive until the weak basis for the comparison is examined. Since almost no research on ME has been done the only comparisons between ME and CFS that can be made at this point, that I can see, involve comparing two definitions. It’s almost impossible at this point to say anything about the pathophysiology of ME that’s based any other than anecdotal reports – and those don’t go far in the medical community.
Any discussion about the differences between the two disorders is going to be a short one.
This disagreement is small compared to core problems with the P2P:
- the project is redundant, not needed, and could lead to considerable confusion
- More participation from the ME/CFS community and more transparency is vitally needed to keep federal agencies on track.
- The P2P processes own guidelines indicate it is not an appropriate vehicle for this type of project
- The projects jumbled history does not provide confidence it was conceived and carried out in a thoughtful manner
Keeping Officials on Alert
My guess is that canceling the Workshop is not any more possible than canceling the IOM contract was. I also believe that the NIH should know that we’re watching and a case should be built should the panel’s findings be detrimental.
Reports and calls to action like this continue also to sensitize NIH officials to the decades long problems ME/CFS has encountered. It’s about building up a ‘listening’ that something has gone awry.
Jennie Spotila and Mary Dimmock’s Letter
The P2P Workshop will use a panel of non-ME/CFS experts, selected by NIH, to make recommendations on case definition, research direction and possibly treatments. You can read more about P2P and what I’ve discovered through FOIA requests in the posts gathered here.
If you are worried about what P2P could produce . . . if you think this is bad science . . . if you want to voice your opposition to using non-ME/CFS experts to advise NIH on the direction of ME/CFS research . . . here is your chance.
Fax or email Dr. Francis Collins today and request that he cancel the P2P Workshop.
Use the template I have provided below, or write your own. Fax Dr. Collins at 301-402-2700 or email him at firstname.lastname@example.org. It’s simple, but it’s a start.
Please take a few minutes to do this today. If you have questions or comments, post them here or email me at jspotila AT yahoo DOT com.
Dear Dr. Collins:
I am writing to request that you cancel the P2P Workshop on ME/CFS . I believe that the P2P Workshop will not advance us towards the much needed ME/CFS research case definition or strategy, for the following reasons:
- ME/CFS experts have already pointed a way forward on research and case definition.
- The Workshop is examining the wrong disease: the problem of medically unexplained fatigue and not ME/CFS.
- NIH has not engaged or involved stakeholders in a substantive way.
- The Workshop decision makers are non-ME/CFS experts.
- HHS has made numerous contradictory statements about the purpose of the Workshop, so it’s goal is unclear.
I understand that you were recently provided with extensive documentation of these five points. Dr. Collins, I am not objecting to the P2P Workshop simply to criticize federal efforts to address the challenges of ME/CFS. Careful consideration of these issues raises legitimate concerns about whether the P2P Workshop will produce the good science and sound recommendations we need to advance ME/CFS research.
I hope you will give my concerns a fair hearing, and that you will cancel the P2P Workshop.
Learn how a 67 year old retiree and his wife felt compelled to lace up his running shoes and get into action to support their son – and everyone else with this disease in A Run For His Son…and Everyone