Solve ME/CFS Initiative (SMCI) Position on P2P

P2PThe NIH Office of Disease Prevention Pathway to Prevention (P2P) program approved a proposal for a workshop to provide an evidence-based assessment on ME/CFS. We first wrote about the P2P workshop program in April (http://solvecfs.org/pathways-to-prevention-for-mecfs/). Since then we have been working with the advocacy community to stay abreast of the P2P process and assess its impact on ME/CFS.

We applaud the fact that a P2P is focusing on ME/CFS but we have concerns about the evidenced-based literature review. We have reviewed the most recent protocol posted by AHRQ evidence-based assessment center on May 1, 2014 (read it HERE )  and have identified serious flaws with the sample search strategy described in the appendix.

This search and corresponding criteria will bias the evidence base to cognitive behavioral therapy (CBT) and graded exercise therapy (GET) trials – treatment approaches that are not specific to ME/CFS (as noted by AHRQ) – and will not assess any of the important biomarker research that has been conducted and funded (primarily) by NIH over the past 25 years.  This is unacceptable.  The search criteria must be broader and must include terms that reflect the important advances that have been made in biomarker research for ME/CFS. We believe it is not too late to correct this and that many stakeholders would be willing to participate to help make the P2P as effective as possible.

We have written a letter to Paris A. Watson, Senior Advisor, NIH Office of Disease Prevention, Susan E. Maier, Ph.D., Deputy Director, NIH Office of Research on Women’s Health, David M Murray, Ph.D., Associate Director for Prevention, Director of the Office of Disease Prevention, and Francis S. Collins, M.D., Ph.D., NIH Director to address these concerns. You can read our letter to the NIH concerning the P2P HERE.

It is imperative that this P2P workshop address gaps in research because it is plausible that the NIH will use the P2P evidence-based report to inform a new ME/CFS funding opportunity –  the current program announcement expires October 25, 2014 (http://grants.nih.gov/grants/guide/pa-files/PAR-12-032.html).

We have requested that the NIH tell the ME/CFS community whether the P2P will inform a new NIH funding opportunity.  If so, it is critically important that the P2P go forward with an evidence-based review that will result in a compelling funding opportunity that attracts investigators to ME/CFS research.

Dr Suzanne Vernon, the Solve ME/CFS Initiative’s Scientific Director continues to serve on the working group, (made up of content experts in ME/CFS – clinicians, researchers, patients, patient advocates, caregivers and Federal partners). Though the work done they have done to date is limited, she will remain engaged in order to help make this ME/CFS P2P workshop the best it can be.  She is working to bring attention to the flaws in this evidence-based process in the hopes that the P2P will fix it and get it right. We are happy that Dr Vernon is serving in this capacity and able to lend her expertise to the proceedings.

Our understanding is that there will be opportunity to comment and offer feedback on this report; that at the two-day workshop, the P2P panel will hear from the expert speakers and be able to ask clarifying questions in a town-hall-like Q&A that will take place after each session during the meeting.  We will bring you information on how and when to participate as soon as it is available so that together we can do all we can to ensure the resultant recommendations are aimed at improving the robust nature of the research into ME/CFS.

Read our earlier blog post that explained the P2P process HERE

Read more about the Pathway to Prevention workshop program HERE

Read more about the systematic evidence review being performed by AHRQ HERE

 

Tags: , , , , , , , , , June 12, 2014
  • Kathe Brown

    What am I missing here? What is Path to Prevention in CFS/ME anyway? How do you prevent something you don’t even know what it is or how you get it in the first place?

    • lovemygrandchildskylar

      they must believe it’s a deliberate behavioral problem that such as bulimia/anorexia?…as in it’s all in our head and we are causing our own illness?

      • lovemygrandchildskylar

        they believe they know what the cause is(somatic) and they want to make sure that all the research points to their conclusions…they will accept nothing less than that the answers are such that they lend credence to their hypothesis…CFS is a political hot potato, same thing that is happening in Lyme research…if you can’t find markers through scientific research, and then look at symptoms and patient information about what they say is going on in their own body, and then make informed decisions from that collection of data to treat the patient, the “scientific” community will do all they can to discredit you as a scientist and a medical practitioner ….they say that there isn’t any “hard science” to back up claims that one is controlling or curing a particular malady…even if it is working.. the most used word in scientific circles is “quack”.. in the Lyme community, there are tests given by the CDC which don’t catch at least 50% (some say as high as 90%) of the cases of Lyme…there are tests that can be given by other companies that catch way more cases of Lyme…because the CDC has no control over, and makes no money on these other tests, they claim that those that use those test are frauds, even to the point that they are
        liable to be charged with mal-practice suits….science has gone so far out of reality, that only tests that can show “something”, blood tests or x-ray, are viable…they do not accept patient testimonies on what is going on in their own bodies…if nothing can be found running the tests that they agree with, that come to conclusions that they have already decided are their “truths” then nothing is or can be found, therefore it’s “all in the patients head”, they are “crazy” and dismissed…”science” today is a political football…scientists vie for dollars to do their research…easiest way to get what they want is to point fingers at their competition, calling names(quacks) and discrediting them in the media and within their hollowed halls of scientific education….our “health” is only a game to be won for them, the allopathic community, and the prize is power, control, and tax dollars…look at the case of Dr. Stanislaw Burzynski, if you don’t believe what I’m saying is true..so many people, children as well as adults, are suffering needlessly because the CDC will not allow for certain tests to be run, they discredit anyone who says they continue to have symptoms of Lyme disease well after the standard treatment has expired…those with Lyme that was never caught, who have severe, debilitating symptoms, are dismissed because they don’t “believe” in Chronic Lyme Disease….because at that point their(CDC) tests can’t find the presence of Lyme…and so because they won’t accept that all these things are possible, insurance companies will not pay for any treatment outside of the 3 weeks of antibiotics that is used to treat a recent case that has all of the standard symptoms, including a bulls-eye rash…many patients never get that rash, and they indeed have Lyme Disease….it’s a political mess…