“a large, highly representative electronic data infrastructure for conducting clinical outcomes research. Specifically, this program will promote a more comprehensive, complete, longitudinal data infrastructure”

If there’s anything the chronic fatigue syndrome community could use right now is a break with clinical trials. The two most salient facts about clinical trials and ME/CFS is that a) they’re darn rare, and b) they should be common given the size of the community, and the many different treatment options people with ME/CFS and their physicians employ.

building a wall

A community effort to produce the best possible clinical trials for ME/CFS

At the FDA Stakeholder meeting one speaker bluntly said neither researchers or drug companies are interested in chronic fatigue syndrome but then pointed a finger at the audience and said “If you build it they will come…They always do”…

And here we are – with a chance to build it

Presented with a chance to support an ME/CFS clinical trials network, Health Rising partnered with nine other organizations (Race to Solve CFS, CFIDS Self Help, CFIDS Association of America, CFS Knowledge Center, Fibromyalgia-ME/CFS Support Center, Inc.,  Massachusetts CFIDS/ME & FM Association, OFFER, PatientsLikeMe, Rocky Mountain CFS/ ME & FM Association and Speak Up About ME) to lay the groundwork for one.

Lead by the CFIDS Association of America, these organizations will complete for $12 million to fund to up to 18 “Patient-Powered Research Networks”.

According to their website, the Patient Powered Research Networks program will build “large, comprehensive electronic databases that give patients and doctors input into clinical research”. One of PCORI’s major outcomes  –  “highlighting the comparisons and outcomes that matter to people” –  might have been very handy six months ago.


One wonders if Ampligen would be available to ME/CFS patients today had PPRN documented the ME/CFS communities willingness to try the drug.  The panelists who voted for Ampligen felt that ‘given the needs’ of the ME/CFS community that Ampligen should have  been made available. Two votes (say, Dr. Komaroff and Dr. Unger) were all that stood between  the approval and rejection of that drug.

According to the PPRN website, this program creates “a large, highly representative electronic data infrastructure for conducting clinical outcomes research.” That ‘highly representative’ part is why every organization and every person with ME/CFS should join in this effort. This only works if a broad swath of the ME/CFS population is involved.


stethoscope, pills and sheet of paper

The PPRN produces an electronic data network that will include patient and physician input and facilitate more clinical trials for ME/CFS.

Health Rising is proud to work with the CFIDS Association of America to bring clinical trials for ME/CFS a step closer.  The next step in the process is gathering data from the patient community. This is an important step as it will show the PPRN judges the community supports the effort to get produce clinical trials.  Simply completing a  quick 5 question survey will accomplish that.

Please fill out the survey here and bring us a step closer to building our own Clinical Trials Network. Let’s get rolling on bringing more treatment possibilities to the ME/CFS Community.

The time is ripe for something like this to happen in the ME/CFS Community.

  • If you read the Roundtable Report with Simmaron you know our physicians are bursting with treatment ideas and want to test them.
  • If you followed the FDA Stakeholder meeting you know Dr. Peterson and Dr. Klimas  told the FDA  they and the ME/CFS physician community are ready now to produce large, networked clinical trials.
  • If you’ been paying attention  the past couple of years you know that despite two successful Rituximab trials, no US trials exist for this possible breakthrough drug.
  • If you’ve been following this blog you know new or unstudied possibilities (aka, Vistide,  high-dose B-1, IVIG, etc. ) are popping up all the time.
  • If you’ve been watching the CFIDS Association of America, you know their drug repurposing study suggested that two drugs, used together, could make a difference in ME/CFS.
  • If you kept up with the FDA you know they declined to approve a drug, Ampligen that the ME/CFS community and its doctors (including those who’ve used the drug) strongly embraced.


From the CFIDS Association Announcement:

“The CFIDS Association has partnered with 10 other ME/CFS and Fibromyalgia organizations to compete for $12 million that will fund up to 18 Patient-Powered Research Networks. These Patient-Powered Research Networks will serve as the basic building blocks for a National Patient-Centered Clinical Research Network.

This is a tremendous opportunity for the ME/CFS and Fibromyalgia community to ‘mainstream’ ME/CFS & Fibro research and will attract the best and brightest investigators. If awarded, it will give us ample opportunity to participate in ME/CFS and Fibromyalgia research and enter into the conversation about the types of research that should be done.”

Part of our application requires that we describe some basic aspects of our community. Please take a moment to answer the 5 questions of this survey. Your responses will help our application be the best it can be. Thank you!

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