The draft systematic evidence review on the Diagnosis and Treatment of ME/CFS has been published.
This review is extraordinarily important because it is being presented to the P2P Panel in a closed door session any day now. This review will be the only evidence presented to the P2P Panel in advance of the Workshop on December 9-10, 2014. Expert presentations at the Workshop may support, refute or expand upon the review, but it is likely that the Panel will ascribe very heavy weight to this report.
I have not read the report yet, and will hold off on commenting until I do. A group of advocates is working together to review the material and prepare highlighted issues that others can use in their comments.
Public comment on the review will be accepted through October 20th. Regardless of whether you plan to submit comment, please read at least the executive summary of this report if you are able to do so. It will be one of the most important documents on ME/CFS published by the government this year.
This is entirely what anyone familiar with systematic reviews would expect. Its the wrong tool for the job, and improperly applied.
I hope you are well enough to submit a comment, Alex. We need knowledgeable comments on the report. AHRQ is required to deal with each one.
Absolutely agree with Alex, our own Alexander the Great and with you Jennie. I hope to get out of my post CPET flare up in time to contribute with comment. As always I deeply appreciate all you do on behalf of PWME.
Notice that ALL of the exercise trials mentioned by this document defined patients by either the Oxford or Fukuda criteria–neither of which requires post-exertional fatigue. In other words, the patients in those trials may or may not have had any true sickness beyond normal tiredness.
Yeah, exercise helps people who are merely tired. It HARMS people like us.
People are working on analyzing the issues. This will take time, its not like we are well. Fortunately the time for a response appears to have been extended.
We have until October 20th to respond to the evidence review. That time is unchanged.
The extension is in the response period on the P2P report, extended to 30 days (from the original 15).
What you do for the ME/CFS community is wonderful. I don’t know how you do it. Some days I can’t quite understand all of the bureaucratic ins and outs, but you clarify and explain them to my addled Me/CFS brain.
Looking at this, I’m getting a stomach ache in addition to the regular symptoms.