Jennie Spotila has stopped the publication of the Pathways to Prevention report on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (!)
The P2P report has been temporarily paused…
Actually she’s just paused it. During her sleuthing (which included filing a Freedom of Information Act) Jennie found that many of the public comments were never forwarded to the P2P committee! Among those may have been the comments from the federal advisory panel for ME/CFS (CFSAC).
This was a major oversight and the NIH has agreed to pause the process so the committee can review all the public comments before the publication of the final report.
The draft report was very promising. It called for vastly increased research funding, state of art technology brought to bear on ME/CFS, Center’s of Excellence, International networks, and international conference, an organized effort to produce validated outcome measures, career paths for ME/CFS researchers, ways to bring new researchers into the field early and more.
Hopefully the addition of all the public comments will help them further strengthen what was already a very strong report.
Find out more at P2P Mistrial on OccupyCFS
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I’m sure this will go through with the stated amendments. The sooner the better! Once it is finalised and published I will make a point of forwarding it to the minister for health here in the UK. The situation is dreadful here. There isn’t even a dedicated consultant in the whole of Scotland!
Unfortunately the situation is not much better here. We have a handful of experts who are all overtaxed & underfunded, flung wide & far across this large country & most are not accepting new patients. Maybe this will improve the situation internationally as well as nationally.
Christine, Interesting ,there is no consultant with a specialism or even interest in any of the hospitals in Northern Ireland either .
f eel so sleepy most of time feels like brain is trying to shut down also have a lot of pain.phone 615 934 5899