The public review session on Monday in Atlanta was part of the CDC’s ten-year review of the program. Thus far the research program has received several internal reviews and an external review and is now in the process of creating a Five-Year Strategic Plan. The public review session Atlanta was focused on suggestions regarding the CDC’s future direction.
A Rocky Start – Amazingly enough, just months after Kim McCleary blasted the CDC for a lack of organization and planning the CDC exhibited those characteristics in spades. The meeting was announced just two weeks before it was to take place – giving people little time to prepare – or put aside time to attend. Since the late notice made getting to the site difficult and since traveling is too much for most ME/CFS patients anyway telephone call-in capability was essential but there was none. Apparently pressure from the CFIDS Association of America got that instituted (who else would do it?). The goal of the meeting was to comment on the CDC’s upcoming research effort but since the CDC hadn’t released much on that nobody had any idea what it was.
This is the Plan? Apparently in response to criticisms from the CFIDS Association of America and the IACFS/ME the CDC quickly cobbled together an overview of the new plan. The document, though, was more a plan for the plan rather than an actual plan – it was simply a generic document that gave a broad outline of the CDC’s goals.
That didn’t go over well. The IACFS/ME representative Dr. Klimas noted with dismay at how sparse it was and Kim McCleary railed at it. It reminded Dr. Katrina Berne of a similarly slipshod effort she’d had dealing with obviously uninformed and disinterested CDC officials on a provider education program. She stated that the effort thus far was ‘consistent with the CDC’s slipshod approach to CFS over the years” calling it nothing more than ‘”lip service’. The review process, thus far, had all the aspects of a program not wanting to reveal its direction for fear of being criticized.
Once the proceedings began, though, the CDC ran them in a very professional and objective manner. A high-level official (Director of Viral Program) started the meeting off. (The head of the CDC was supposed to begin it but was, forgiveably, preoccupied with the swine flu outbreak). Special kudo’s, in particular, go to the moderator (hired by the CDC) who managed a good degree of compassion and level-headedness despite the onslaught that followed. Everyone who wanted to was allowed to speak, including people who didn’t sign up (or who didn’t get on the list even though they did sign up such as myself) and then speak again if they wished to.
Boy did they speak.
Patients and Advocates Show Up – And Blast the CDC
One wonders if any government funded medical research program in existence could elicit such a barrage of negative comments (or if any other patient population is as articulate about their disease). Thankfully (and surprisingly) the CDC officials stayed throughout the session and got a full dose of the communities anger and dismay at the lack progress. It couldn’t have been anything but extremely uncomfortable for Dr. Reeves, who reportedly sat with his head down for most of the meeting.
Heart felt pleas for more and better research alternated with rather complex analyses of research topics and absolute blasts decrying the lack of progress and calls for Dr. Reeves to be replaced. It was a good, diverse mix; the ME/CFS community showed up and acquitted themselves very well.
“The things we’ve been asking for all these years are still out there” – Twenty Years Plus Patient
Besides the bitter lack of meaningful progress some themes were hit again and again; a definition (Empirical) that does not represent the average ME/CFS patient, the dire need to produce verifiable subsets – a topic the CDC seems to have abandoned, a desire for more in-depth pathogen studies -which the CDC shows no interest in , the lack of collaboration and interest in other research efforts and a general feeling that the program needs to be redone and that new leadership is needed.
“With 4 million people effected CFS is a health emergency” Kim McCleary
Few people in the audience participated but participation via telephone was high and many advocates joined in; Kim McCleary, Mary Schweitzer, Marly Silverman, Jeannie Spotilo, Tom Kindlon, Katrina Berne, Wilhelmina Jenkins, Hilary Johnson and Craig Maupin all commented on the plan.
This is the first time I’ve heard Wilhelmina Jenkins speak. One of the Faces of CFS on the CAA’s traveling exhibit she figured prominently in earlier advocacy efforts and one could hear why – she is a very powerful speaker . (Her son, interestingly, is married to Kim McCleary of the CAA). I tried to get a transcript of her talk but there wasn’t one and I wasn’t surprised at all; it was spontaneous and from the heart and it was very moving.
“I’ve missed my thirties, forties and fifties with this disease. I don’t want to miss my sixties as well. My daughter has had this disease for 20 years. If my grandson comes down with it will absolutely break my heart.”
Robert Miller tore up the room at the CFSAC meeting a year ago with his story and he did it again today stating
“I am chained to my house. I am dependent on my wife and two eight year olds. I do not have a normal relationship with my son or my wife… I’ve done my part: I’ve given blood, muscle tissue, spinal fluid and lymph nodes….It’s time for you to do yours.”
He was the first person to directly call for Dr. Reeves removal as he slowly and emphatically stated that he believed that
“To refresh the program you need to start at the top. Dr. Reeves has to go”.
Several doctor’s with ME/CFS gave particularly evocative testimony’s. Referring to the empirical definition Dr. Lily Cho M.D. called the CDC’s research ‘garbage in and garbage’. Craig Maupin of The CFIDS Report followed this up with the observation that the average participant in CDC studies spent 31 hours a week at work and 17 hours a week on outside activities.
‘The criteria has been watered down to such an extent that it no longer resembles the disease I have’. Dr. Lily Cho
Katrina Berne, MD, the author of ‘Running on Empty’ and board member of the CAA, has been disabled since 2001. Dr. Berne has clearly been bitterly disappointed by the CDC’s lack of progress calling their efforts ‘slipshod’ and stating that she had ‘little to be optimistic about’ future efforts. She had my favorite line from the meeting stating
“I’ve been ill for approximately the same amount of time that the CDC has been studying it….It would be accurate to say neither of us has made significant progress.” Dr. Katrina Berne
After going off Ampligen Mary Schweitzer’s health (as predicted) has deteriorated and she’s now in a wheelchair but she was a lucid as ever as (if a bit garbled by the connection) as she calmly picked through many areas of need. She called for the CDC to adopt the Canadian Consensus Definition as the clinical definition of ME/CFS and noted that Dr. Jason’s recent study indicates the Empirical Definition mis-diagnoses patients with major depression as having CFS. She called for the General Accounting Office (GAO) investigation into the creation of the Empirical Definition and its suitability for this disease.
“Shouldn’t the definition at least fit the patients it was commissioned to describe?” Mary Schweitzer
My testimony also largely focused on the problems of the Empirical Definition (a common theme throughout the meeting) and I registered dismay at Dr. Reeves decision to characterize this disorder as ‘unwellness’ – putting it just a step below ‘wellness’ and a long way from ‘illness’. That word demonstrates better than anything I know just how out of touch the CDC’s program is with the patients it should be serving.
Tom Kindlon noted his lack of notes and then turned in two spontaneous but quite lucid analyses of the problems with the different definitions and CBT’s failings. Hilary Johnson, always a very harsh critic of the CDC, almost overturned the moderator’s seemingly imperturbable composure, as she slowly stated that the
“CDC should publicly apologize to every patient on the planet”.
Jennifer Spotila the Chairman of the Board of the CFIDS Association of America and a former lawyer demonstrated her legal’s skills have not been lost as she dissected the failings of the program with an almost lazer-like focus. (One would hate to be opposing her in the courtroom.) She noted that the big words the NIH and CDC officials evoked at the Nov, 2006 meeting have faded into nothingness and called for an outside accounting group to audit the program’s effort. She stated that without systemic change the five year plan won’t amount to anything.
“If CDC does not address it’s’ “systemic problems …then the five year program will not be worth the paper it’s written on”
The afternoon reached an emotional peak when Dr. Vollinsky hammered on the CDC’s failings and then returned a second time to do so in an even more emphatic manner. Speaking apparently without notes but in still quite lucidly he noted
“The comments at this meeting indicate there is an overwhelming need for new leadership” and ”I will absolutely be disgusted if there’s no new leadership”.
Aside from Dr. Klimas and Staci Stevens, the ME/CFS research community simply didn’t show. After a rather rambling initial statement on behalf of the IACFS/ME Dr. Klimas returned to emphasize the importance of the program and the need for it to broaden its horizons
The CDC program spends half the money spent on CFS in the US every year; it’s not a small deal (to researchers) where the CDC goes with this money. The international feeling is that the infectious aspect is very important in CFS but not at the CDC. As an immunologist you can’t see the degree of immune activation we see in this disease without an infection…. You’re can’t not look at infections in this disease “
She then implored the CDC to turn the gene expression technologies they had developed to look at the pathogen component in ME/CFS.
It was a compelling presentation by the ME/CFS community and one wonders what effect it had on the CDC Chiefs present.