Chronic Fatigue Syndrome (ME/CFS) Congressional Briefing and Lobby Day with the CFIDS of America (May 2008) by Cort Johnson
The CFIDS Association of America (CAA) gathered some heavy hitters together
to give Congress a sense of what chronic fatigue syndrome (ME/CFS) is and to
lay the groundwork for further efforts to prod them into action. Dr. Anthony
Komaroff of the Harvard Medical School, Dr. Lucinda Bateman of OFFER, and
Scott Simon, the host of NPR' s Weekend Edition at NPR spoke. About 30-40 people attended.
This is a brief overview of a much longer presentation. Kim McCleary, the CAA's President started the briefing off with some big numbers; chronic fatigue
syndrome (ME/CFS) imposes about 25 billion dollars
a year costs to the US economy but the CDC and NIH spend less than $10
million a year on it. After setting the stage she passed the torch to Dr. Komaroff, a Harvard professor and longtime champion of chronic fatigue
syndrome (ME/CFS). Dr. Komaroff – Dr. Komaroff talked about the first patient he saw 20 years ago and then validated the disease for the staffers present with blips from the research scene. He mentioned the HPA axis abnormalities, the reduced blood flows, the altered brain patterns seen during brain imaging studies, the autonomic nervous and immune system abnormalities, the problems with energy metabolism, and the infections present.
He felt enormous strides had been made by the Centers for Disease Control (CDC) in the first half of this decade but noted its CFS research program’s budget is now half what it was just a few years ago – something he characterized as a shame given the advances in technology that have recently occurred.
Kim McCleary spoke a bit then turned to Dr. Bateman, an active Salt Lake City physician/advocate.
Dr. Bateman -
Dr. Bateman noted that she was the only chronic fatigue
syndrome (ME/CFS) expert not only in Utah but in that part of the country.
She stated that treating ME/CFS does not require special skills or training
but it does require that physicians take the time to communicate with their
patients and through trial and error learn what works for them. She noted
how punishing ME/CFS can be and talked of the unaccountable personal losses
she’s seen. She lamented the fact that the entire federally funded effort on
CFS consisted of a single CDC course and a moderately funded public
awareness campaign. Kim McCleary noted the low diagnosis rates, the need for early treatment and the ‘life sentence’ that CFS imposes on people and then turned to Scott Simon who very quickly brought the house down.
Scott Simon - He noted that as a journalist that he does not take stands on public issues but that he was
here as Lauren Hillenbrand’s friend and that
he was a very determined friend. Not long after Seabiscuit was published he
asked her to come down for an interview but after learning she was too ill
to move he went to her house. Over time, she and his wife and daughter had
become close friends. He called her the funniest, most interesting and
considerate person his wife and he knew.He underscored how difficult ME/CFS can be even for those with the resources to treat it by noting that Lauren lived only five miles away but was still unable to attend the briefing. He noted that her engaging nature made it hard to understand how limiting her life was for but he’d recently realized she’s spent most of the past 20 years in her bedroom. As he described his pride at participating in her wedding he simply broke down into tears.
He said he’s seen a lot of tragedy as a journalist but that there were four million Lauren Hillenbrandt’s in the US, many without the financial security that Lauren has, and many who have not been diagnosed. When he finished I doubt there was dry eye in the room - it was a very moving presentation.
Kim McCleary stood up and choked up and then recovered and then noted that while the government spends just one dollar a year per person with ME/CFS the average family loses about $20,000 a year. She made some more remarks and then thanked everyone for coming and opened it up for questions.
After a slight pause the patients jumped in and fed her a series of questions that she effectively used to reinforce how lacking the federal response was to this disease. Overall the briefing was a very effective blend of information and emotion. It’s hard to believe that anyone sitting in that room wasn’t affected.
Lobby Day
There was no Lobby Day this year but the CAA didn’t miss the opportunity to have those of us present to lobby our elected officials so off we went trudging the halls of Congress. Why no Lobby Day this year? I was informed by a Board Member that Lobby Day is the single most expensive single project the CAA takes on year. With the Research Initiative underway they may not have had funds to do both; the CAA is not a big organization.
The Last Lobby Day - Before we take on this Lobby Day let’s look at the last Lobby Day. Our goal last year was to get signatures for a letter asking Dr. Zerhouni to give ME/CFS consideration as the NIH embarked on their big Roadmap Initiative. We appeared to fairly successful in our first goal – getting signatures - but fizzled out in our second one, getting Dr. Zerhouni to give a damn about this disease. His reply to the letter didn’t suggest that he has any more interest in ME/CFS than he did before.
This time we were trying to get support for appropriation requests the CAA has inserted into the appropriations bills for the NIH and the CDC. They are asking that Secretary of Health to:
- (1). Renew the CFS federal advisory committee’s (CFSAC) charter (ends Dec.
2008) and implement the Committee’s recommendations, address the low
diagnosis rates, and make more efficient use of funds.
(2). Build multicenter collaborations (COE’s) and new research initiatives, and create an intramural CFS research program to study CFS pathophysiology, identify biomarkers, etc.
(3). Restructure the CDC’s CFS research program, create a CDC CFS extramural program, do a peer review of the program, provide itemized expenditures of CDC CFS spending, and explain how the CDC will incorporate emerging evidence that HHV-6A and Epstein-Barr Virus play a role in CFS into their research.
(4). Create models of clinical care within the Health Resources and Services Administration
(5). Have the Social Security Administration closely monitor exercise test-retest studies indicating metabolic problems are present in CFS and provide them with plans to incorporate them into the 1999 Social Security Ruling.
I went along with two ME/CFS patients on the CAA’s board, Adam Lesser and Brian Smith and someone from the Sheridan Group. When we stepped into Brian’s Congressman’s office-he was stepping out of a meeting with a multiple sclerosis group. The MS people got to meet with the Congressman – we were scheduled to meet with a staffer (translation they have lots of power and we don’t) – but as the Congressman stepped out of the door Brian basically grabbed him and into his office we went. He seemed quite intrigued with our plight.
The last meeting, with my Congressman, Brian Bilbray, was the most interesting. The staffer we met with was very helpful and gave us a lot of time and some good advice. It turns that Congressman Bilbray is very interested in the NIH and he has good reason to be; his district in San Diego is a hotbed of medical research. Congressman Bilbray is in fact building a coalition of California congressman to lobby for more NIH funding and leads monthly luncheons that give overviews of different diseases in the Capitol. He said the Congressman would be quite willing to sign a letter asking the CDC to open up about the CFS program.
The Congressman will be trying this fall to get on a Committee that has oversight of the NIH. If he gets on it and we can get him interested in ME/CFS that could be helpful.
Aftermath
Those of us still upright met back at Tom Sheridan's house where we were treated to finger foods and talk.
Biomarker, Biomarker, Biomarker - The Search Continues. One central issue came up again and again throughout the week - at the CFSAC meetings, in talking with researchers and at Lobby Day – the need to get a biomarker – an abnormality that’s unique to ME/CFS patients. Getting a biomarker is how we break the back on the legitimacy question. Later at his house Tom Sheridan underscored how strong a hold a psychological conception can have in medicine when he related how multiple sclerosis – that terribly disabling disease that can kill people – was treated as a psychological disorder for decades. When the technology improved enough to find lesions in the brain its legitimacy was assured.
What about our search for a biomarker? A couple years ago the Japanese stated that they believed they’ve found one. Suzanne Vernon and Kim Mc Cleary had just taken a trip to Japan and I asked Dr. Vernon about this; she stated they believe they still believe they’ve got it but they’re still a couple of years away from wrapping it up. Later at his house Tom Sheridan recounted how about five years ago Bill Reeves of the CDC thought he was close to a biomarker for GWS (CFS) but it didn’t pan out.
It’s very likely that just as with MS technological improvements will be our savior. The Japanese are taking a new technological slant towards a biomarker for ME/CFS. Dr. Kerr, Dr. Gow, the CDC and an NIH funded study are using gene expression studies to look for biomarkers. Dr. Baraniuk is using protein expression in the cerebral spinal fluid to do so. This is all new technology.
Missing In Action - on a different note our Tom Sheridan, our Lobbyist, noted the lack of participation by healthy relatives, friends etc. in CFS as opposed to other groups. This is something that Mike Munoz, the ex-President of the Rocky Mountains CFIDS Association, will remark on in an upcoming interview. If this is true it means a really critical component of our effort, indeed of any disease advocacy effort – healthy volunteers – are missing for some reason. One wonders why this might be so.