Business as Usual or A Change In the Winds? The CFSAC Meeting Begins

Federal officials are again sitting down with CFS physicians, researchers and patient advocates to discuss federal policy. This is the third meeting since XMRV burst on the scene and its an important one. (See agenda: )

Day One
The Science

At first glance the highlight of the meeting appears to be theScience Day on Tues, and with its mix of Dr. LeGrice talking on XMRV, Dr. Lights on his startling sensory receptor work, Dr. Lerner on anti-viral treatments, Dr. Klimas take on the immune system and Dr. Jason on - well, whatever no he wants to talk on (its always good J ); in this caseOther Biological and Non-Biological Measures of Change, itll be intriguing.

Who is Dr. Le Grice? The director of the National Cancer Institute's Center of Excellence in HIV/AIDS and Cancer Virology, he has, as one suspect, quite a resume having co-authored over 155 papers, many of them on HIV/AIDS. He's another example of the kind of top-flight researcher XMRV has attracted. Other than professional interest his direct connection to the virus is unclear.

Days II and III do not, at least at first, appear to be as stimulating but these are important times for CFS and they will give us a chance to see how our government officials are responding not only to the opportunities XMRV has provided but to the ME/CFSs increased visibility. Things have changed in the past year. Important researchers are interested. CFS has made headlines. The Director of the NIH not only said something about CFS - something that was unthinkable a year ago - but actually attended a workshop on it. A lot more people know about CFS than did a year ago. A lot more people understand this is a serious disorder and that a lot of people have it. This is not the time for business as usual; this is the time for change. This is the time for the federal government to finally start living up to its responsibilities. Will they? Well have plenty of opportunity to find out.

Day II
Business As Usual?

Asst Secretary of Health Koh - Be sure to be up for the start because Dr. Koh our liaison to Dr. Collins (the head of the NIH). will speak. Hes not going to speak much but length, as they say, is overrated. Known as someone who produces, Dr. Koh was Assistant Secretary of Health for a year before he showed up at a CFSAC meeting but when he did - last session he promised results. After noting that that he had lost count of the number of times Dr. Wanda Jones had briefed him on issues of importance to CFS he stated that he and Dr. Jones had a direct discussion with Dr. Collins about the creating a Center of Excellence for CFS, something that, in his opinion, is so, so reasonable. Itll be interesting to hear if Dr. Koh has something concrete to announce.

Dr. Lange - Next there'll be a talk on cognitive dysfunction from Dr. Lange who has done a lot of MRI work on ME/CFS.

Disability Evaluations - after lunch there will be a series of talks focusing on disability evaluations. Particularly look out for Dr. Snells talk on metabolic evaluation. Dr. Snell is the senior researcher associated with the Pacific fatigue lab; his talk will be on the ability of repeat exercise studies to discern the strange, never before seen metabolic dysfunction in a set of people with ME/CFS. This is a hot research area and one wonders if well hear anything new about his work there.

Labor/Health Care - then well hear from Dept of Labor and a talk on how Health Care reform will impact CFS.

Accountability Time​

Trans-NIH Working Group - hidden beyond this innocuous name is a group that has been holding the purse strings for ME/CFS at the NIH for 10 years. They are where the buck stops. I have waiting for years for the CFSAC to get them to the table. They have A LOT to account for.

A Brief Overview - the funding structure for ME/CFS at the NIH is bizarre and is almost doomed to fail. The ORWH - the little Office the program is housed in, is not given any money to spend on chronic fatigue syndrome. Instead, the program relies on the good graces of representatives from Institutes spread across the NIH for funding. If Dr. Hanna, for instance, wants to launch a funding proposal for chronic fatigue syndrome she meets with this group and asks them to get the money from their respective Institutes. (See here for a membership list that appears to be several years out of date. )

It was when the Trans_NIH Working Group was formed (and the program moved to the ORWH) that the three CFS research Centers (remember them?) were closed. The Trans NIH Working Group pledged a more rigorous multidisciplinary approach to ME/CFS and they did; in general the studies they have funded have been superb but there have been far too few of them. Even as the NIH underwent a funding increase of historic proportions funding for ME/CFS started to fall under the Groups direction and continued to fall.

Nothing the group has tried (and they haven't tried much) has been successful.

A 2003 Neuroimmune Conference was supposed to jumpstart a new era of funding for CFS with a small federal grant but the feds took two years just to print the proceedings and the Institutes proved unwilling to step up causing the grant (RFA) languish for years. Dr. Pinn, the leader of the ORWH, complained about how long it took get the Institutes (eg the Trans-NIH Working Group) to fund what she what she called the smallest RFA possible ultimately leaving the ORWH to foot a large portion of the bill. (She later said anything lower than the $4 million would have been embarrassing.) It reportedly took Senator Harry Reids direct intervention three years later for the Office to finally release the grant money for CFS.

The grant did fund some notable projects including the Light study and Dr. Baraniuk's brain proteome study but few studies were rewarded and only a quarter of the expected funding was devoted to pathophysiological research on CFS. Ultimately the four year process fell far short of expectations.

Falling Funding - Over the next couple of years funding for ME/CFS continued to fall reaching a nadir of 4 million - the smallest amount in over decade (not counting for inflation). The Trans NIH Group settled in a pattern of funding 1-3 new studies year in a disease that should have been getting 50. Calls for more RFAs and for Centers of Excellence (combined research and treatment centers) were repeatedly met with replies that there was no money available.

The most the Trans-NIH Group was able to do in response to falling funding for ME/CFS was to produce a Workshop that told researchers how to go outside CFS funding channels (ie the Trans NIH Working Group) to get grants. Not surprising in a dispirited field that had an 8% chance of getting their new grants accepted, the offer was taken up by few.

The Next State of the Science Conference/ RFA - in 2010 now we are reportedly on the cusp of another State of the Science/RFA opportunity. Dr. Hanna reported that a State of the Science conference was due in 2011, presumably followed by an RFA grant. Because the money for that will presumably be coming out of the Trans-NIH Group we need to be aware of the history of the group and be vigilant about the promises that they do or do not make.

Hopefully the CFSAC will press them on

  • The decline in research funding and productivity over the past 10 years given the groups stated mission of 'stimulating and supporting" research.
  • The unwillingness of the Institutes to cough up even small amounts of funding for ME/CFS
  • The disjunction between Dr. Kohs position that treatment/research facilities (COEs) for 1 million sick Americans are so, so reasonable and the unwillingness of the Trans NIH Working Group to even consider them. Their and Dr. Hannas replies suggest they believe COEs are so out of the picture that advocating for them borders on the realm of fantasy. Why is it a fantasy to request that 1 million American without access to suitable treatment be given treatment centers? What in the Institutes approach to this disorder makes that request a fantasy?
  • The website announces three future Workshops for ME/CFS - only one of which gets to the heart of ME/CFS patient's concerns: study of CFS across the lifespan, treatment approaches to CFS and "Issues in Dr/Patient Relationships" (????????). What is happening with these Workshops?
  • Does this group really convene monthly? And if so, what in the world do they do?
  • Should the Trans-NIH Working Group be disbanded and another approach be taken given the Groups record of accomplishment over the past 10 years?
  • CDC- the CDC representative has much to account for as well. Last year Dr. Reeves reported that two International Conferences would have taken place by now but we havent had one - yet another sign that CFS is always being placed in the back burner. Why were these promises not kept? The CDC search for a replacement for Dr. Reeves has stretched long beyond the originally scheduled period. Why was the search extended and what kind of background are they looking for in a program leader. Of course, also what is the CDC doing now with XMRV?


Cort you are a thinker etc with all ME. I wonder if may appear in the light of findings of XMRV related viruses in our illness that Viruses are the basis of so many and it is that understanding which (well on the way) may through light onto.
The Trans-NIH group approach to funding could bear some relationship to the CDC approach to Congressionally-earmarked funds for CFS - turn it into a cash-cow for whatever needs you have. The difference is that creative accounting at the CDC eventually resulted in an investigation and some action.

It would be very interesting to ask for the total spent on CFS research since the illness was recognised, to compare with significant results from these funds. We could then compare this with the WPI's record.

How well did money spent on CFS research at the NIH serve the patient community before the discovery of a possible connection with XMRV? This bears directly on a question of vital interest to those you are listening to "Who should get the bulk of future funds?"

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