Deal With It

The CFS Advisory Committee will hold its next meeting on June 13-14th. This is the text of the public comment I offered at the previous meeting on October 25, 2011.


I ask the voting members of this committee: do you think this committee is effective? I believe that all of you serve with the best interests of CFS patients in mind, but let’s examine the track record – or lack thereof – for your own recommendations to the Secretary:

  • Regional centers for research and clinical care? No.
  • Healthcare provider education and training? No.
  • Use of the name ME/CFS across all agencies? No.
  • Research funding commensurate with the burden of this illness? No.
  • National effort to arrive at a new consensus case definition? No.

No no no no no.  No meaningful action.  No meaningful funding.  All your work, and what is there to show for it? You should be angry, or at least frustrated.

Five years ago, you recommended that NIH issue a new Request for Applications on CFS.  It didn’t happen.  Many patients expected new funding to be made available after the April State of the Knowledge meeting at NIH.  It hasn’t happened.  You know there is an urgent need right now for research funding, and we need you to hold HHS accountable.

Today, I urge you to recommend that NIH issue an RFA for CFS research backed by at least $10 million in funding, and that this RFA be issued in the next six months.  This recommendation is specific, actionable and measurable.  Furthermore, this money must be spent on CFS, not related conditions, and no more money should go to CBT or other psychological approaches.  We have begged NIH to fund research into pathophysiology,  objective diagnostics, and treatment; we have begged you to help us.  I agree with Bob Miller that for NIH to spend $600,000 on Dr. Fred Friedberg’s “commercially viable program of illness self-management” is an insult to every CFS patient.

At the State of the Knowledge meeting, Dr. Collins said that Secretary Sibelius had directed NIH and other agencies to give CFS “special attention.” Today we learned about a new HHS working group on CFS.  But talking is not doing.  I say we test this alleged commitment to CFS.  Make the recommendation that NIH issue a $10 million RFA for CFS research in the next six months.  At the next meeting of this committee, we can see if “special attention” actually translates into meaningful action.

I do not accept woe-is-me budget talk from federal officials, and neither should you.  We know that money can be found for high priorities.  Dr. Fauci’s appropriation of $2 million for the Lipkin XMRV study proves that.  Money is available, but the agency leaders are making conscious choices to spend the money elsewhere, on illnesses that are a “higher” priority.  NIH’s FY2012 budget request is for $32 billion.  Can anyone seriously believe that there is no money in that budget to increase research on CFS? Do you believe that this massive budget cannot be squeezed to find a few extra million for CFS research? The current level of NIH funding for CFS research is the equivalent of pocket lint.  Do not dare to tell us that there is no money for CFS research.  The money is there.  It’s just that NIH does not think we are worthy of it.

While DHHS fiddles, our lives are burning.  Physician education? We do that every time we go to the doctor.  Consensus case definition? Researchers and clinicians – not NIH or CDC – have participated in devising case definitions based on true evidence.  CFS research? We fund that ourselves.  Non-profits are funding pilot research that only then can secure government funding.

We are doing all this work ourselves, in cooperation with researchers and clinicians. Voting members, help us by pushing harder, by demanding meaningful, measurable action.  Pass a recommendation today that NIH issue a $10 million RFA for CFS research in the next six months.

All these years, we have done this work, and we will continue to do this work.  But I say to all of you: you are not off the hook.  As long as we have to deal with CFS, you have to deal with us.  We are still here.  Deal with it.

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