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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Solve ME/CFS Initiative: Position Statement on P2P


Senior Member
Cornwall England

Solve ME/CFS Initiative (SMCI) Position on P2P

The 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) trialstreatment 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...

Read more: http://solvecfs.org/solve-mecfs-initiative-smci-position-on-p2p/