PHOENIX RISING

Bringing Opportunity to ME/CFS Patients

A GUIDE TO ME/CFS ADVOCACY

My name is Cort Johnson and I run the Phoenix Rising website (phoenix-cfs.org).

In 2001 when the NIH was still running the three Cooperative Research Centers the NIH funded 43 studies/projects including funds for the Cooperative Research Centers that were directly focused on CFS. At their peak the CRC’s were publishing from 10-15 studies a year.

In an interview recently posted on the Phoenix Rising website Dr. Friedman, a past member of the CFSAC, stated that the ‘decision to cancel the funding of those Centers had a numbing effect on CFS research whose consequences are still being felt today'.

THE DO NOTHING PROGRAM

According to the CRISP data base the NIH is currently funding 14 studies directly focused on CFS. Except for the small bounce given by the Neuroimmune RFA the NIH has been only able to fund 1-3 new studies per year over the past five years; it funded 2 new studies in 2003, 1 in 2004/5 and three in 2007 (two of which are on cognitive behavior therapy). Of these almost half are short-term 2 year studies. This for a disease believed to effect up to 4 million Americans, cause 20-25 billion dollars a year in economic losses and cause high rates of disability. In the context of a disease of this magnitude the NIH program on ME/CFS can be characterized as doing little or nothing. 

The only ‘major’ project the ORWH has provided for ME/CFS over the past five years – the Neuroimmune RFA – was a disappointment with only a quarter of its projected funds going to ME/CFS research. The only recent ORWH initiative was an attempt to find CFS researchers funding in other diseases or conditions. The NIH projects that CFS research funding from 2003-2008 will decline by 50%; from an embarrassingly low $6 million dollars to $4 million dollars. A search of long term funding levels for over 200 diseases and conditions indicated that for no other program has had its research funding decline so dramatically.

Dr Hanna has said that difficult budgetary times are hampering medical research everywhere. This is surely true. She has said neither new (RFA) grant packages nor Centers of Excellence programs or other programs will be forthcoming in CFS or indeed throughout the NIH in the near future. Yet from September through December 2007 the NIH announced or reissued  80 RFA grant applications and created 12 new Centers of Excellence or Centers of Research.

A LONG TERM PROBLEM.

 It’s clear that the current budgetary problems at the NIH have little to do with the long term decline of the CFS program there. Even when NIH budgets were at historical highs the ME/CFS research program was floundering. During this time the Chronic Fatigue Syndrome Working Group (CFSWG) failed to endorse a Centers of Excellence program, dragged its feet on producing a very small RFA grant and then failed to act pro-actively to ensure the grants success. The CFSWG’s inability to find a way to fund Dr. Lloyds Dubbo grants – which reportedly barely failed to met the minimum scores for consideration – suggests they had little understanding of the plight the ME/CFS research field finds itself in or the opportunities it presents.

Yet federal officials came out in impressive force during the recent Grantsmanship Workshop for ME/CFS and ME/CFS advocates applauded their knowledge and concern. So we have a conundrum. How has it happened that these knowledgeable and concerned people have presided over the worst decline in ME/CFS research funding in its history? Why are one or two or three studies funded a year in a disease that effects millions acceptable to the NIH?

When such events happen under the watch of good and concerned people it’s evident that they face major roadblocks. It is clear that these roadblocks do not originate at the ORWH. Both Dr. Hanna and Dr. Pinn are held in high regard by the CFS community.

GETTING THE ANSWERS

I suggest that CFSAC needs to find out why the CFS program at the ORWH program has engendered so little support. I request that the CFSAC invite CFSWG members to a CFSAC meeting to answer that question. They could be asked the following questions.

              (1) How is CFS received at their particular Institute? What issues do they face in building a strong CFS research program at their institute? What kinds of perceptions do they need to surmount?

              (2) Why was the NIH able to fund three Cooperative Research Centers and an extramural grants program prior to 2002 but is unable to do so now? What has changed between now and then?

              (3) Given the dramatic decline in CFS research funding over the past five years using an extramural research focus why is a Centers of Excellence or Research Centers program not a viable solution? Why could a Research Centers program simply be paid for out of the funds the Institutes are no longer paying into the CFS program? (I would note that two people sitting at your table have expressed interest in Centers program; Dr. Klimas – who successfully ran one before –and Dr. Reeves has stated that Emory University, a highly respected institution with which he is involved, is interested. The interest and the knowledge needed to run such a program is already present.)

              (4) What can the CFSAC do to aid the CFSWG members in their efforts to build a strong CFS research program?

              (5) What are their projections for CFS research funding over the next five or ten years?

              (6) What are the pro’s and con’s of the CFSWG/ORWH approach? Is this approach given its results over the past five years a viable one?

As the statistics on the prevalence, disability and economic losses regarding ME/CFS continue to climb the ME/CFS research program at the NIH continues to decline. The CFSWG is presiding over an unprecedented drop in CFS funding at the very time the research field appears to be ripe with opportunity. Doing little or nothing about a disease that effects millions is surely not a legacy they wish to leave.

The CFSAC and the Chronic Fatigue Syndrome Working Group have similar goals. Getting the CFSWG on board will give the CFSAC background with which to refine its recommendations to the Secretary of Health and shed light on an area that has been too long shrouded in darkness.

Thank you for your time,

Cort Johnson

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