The main subject – the CFSAC Charter was not the most enthralling subject – but it is a critical topic if the Committee is going to make a difference and Dr. Wanda Jones should be congratulated for thinking strategically and devoting time to trying to get the Committee on more solid ground.
Dr. Koh Arrives – Assistant Secretary of Health Dr. Koh made a surprise appearance at the beginning of the session- the first time in several years that has happened. The last Assistant Secretary of Health to show up was Dr. Agwunobi who seemed passionately interested in chronic fatigue syndrome – he was very good at saying all the right things – but after a year or two on the job without much impact on ME/CFS he left the federal government and joined Walmart.
Dr. Koh wasn’t nearly as effusive as Dr. Agwunobi but he did promise action. He several times noted that Wanda Jones (who reports to him) had (repeatedly) made it clear to him that this was an important task. I asked Kim McCleary if she knew anything about him and she said he was known as real ‘doer’; that he got things done – and she was hopeful about him.
National Heart Lung and Blood Institute (NHLBI ) Rep Bombs – it was disquieting to see the NHLBRI rep basically not answer a very simple question at least three times from Dr. Jason, Dr. Houghton and Dr. Hartz about the down side of not accepting blood donations from CFS patients. Dr. Klimas pointed out that the low blood volume present in ME/CFS meant that patients shouldn’t be giving blood anyway. One wonders if the NHLBI is simply worried about the costs of changing the printed materials at blood donation offices. In any case it’s clear that the US is not going to follow Canada’s, New Zealand’s and Australia’s lead in preventing CFS patients from donating. The rep seemed out of his depth at several points.
NHLBI study – We did get some information on the NHLBI XMRV study: six labs are involved including the WPI. The study appears to have been beefed up a bit because of interest from outside the US. He mentioned that several problems had occurred which require them to engage in pilot studies. Interestingly, he stated that the time between collection and preparation is important.
Annette Whittemore gave an impassioned plea for more research taking the federal government to task for not treating CFS as the serious disease it is. (Eleanor Hanna would later object about references to the NIH not doing the job on CFS noting that the Whittemore Peterson Institute was getting substantial federal dollars from it. At a break, however, Annette would remark that the grant that went through after it had been applied for three times and only passed when the Obama Stimulus Package money went through. That grant was not on XMRV.) Dr. Hanna is apparently fine with the NIAID waiting the XMRV story out to see it goes bang or boom and the ORWH’s lack of support for CFS – whether imposed from above by budgetary considerations – or from within the Office – continues to disappoint.
I’d never really met Annette before. More than anything I came away with an impression of someone who was bursting with ideas and interesting insights into the disease and our general situation. My understanding is that she had a background in healthcare and it showed ; she was very fluent in the research aspects of ME/CFS.
She chatted about how the word ‘fatigue’ had landed us in the psychological camp from the beginning and how to break that dynamic. We talked about the negative studies; her impression of Dr. McClure was that she was had been handed a bunch of samples to test for a retroviruses and so she tested them. (Unfortunately she later inserted herself into the public debate about the disease). Kuppeveld and McClure in the UK weren’t necessarily ‘bad’; they were however, committed to a particular interpretation of chronic fatigue syndrome and when the first bit of evidence validated that they grabbed it and ran. She said the type of testing they did was sufficient to find a retroviruses like HIV; it was not, however, sufficient to find a retrovirus like XMRV. It was a case of using traditional techniques to search for an unusual virus.
She noted that no other Research Institute has had as intense a biological focus as the WPI. If you look through their list of research studies prior to XMRV you’ll find a more in-depth look at the immune system than anyone else has even begun to muster. She left our chat with the word for ME/CFS patients to continue to be hopeful about XMRV and seemed happy with the way things were going on that front. She does think XMRV underpins many of the troubling problems in ME/CFS.
Not surprisingly she got a round of applause for her talk both from the audience and many of the committee members – the only speaker do so. (Kim McCleary got applause from Annette for her speech. We as patients may very well overdramatize the idea of a split between the two organizations; Annette and Kim greeted each other with big smiles, gave each other a hug and then chatted several times during the day.
Kim McCleary made several points in her short presentation which Leonard Jason and others incorporated into their recommendations. Wanda Jones thought the idea to include the Centers for Medicare and Medicaid Services (CME) was a great idea because they ‘have their fingers on the purse’. The CFIDS Associations wants the CFSAC’s responsibilities to be increased substantially; they requested that the new charter require that the Committee summarize research advances every year, monitor federal activities (presumably have federal agencies provide written reports on their activities every year) and develop and annually update a strategic plan for federally funded CFS research. They’re also increasingly interested in the Dept of Defense and the Dept of Veterans Affairs and asked for them to be ex officio members (non voting) that attend every meeting. (See the CAA’s written testimony).
Kim had worried that a considerable promotion Wanda recently received might mean that we might get dropped from her agenda now that she had more responsibilities. After noting to her how much we appreciated her predecessors efforts but how happy we were that she had taken over she stated that Dr. Parekhnow worked for her and they were both hitting up Dr. Kow on our behalf! She also said that instead of having 101 things to do she now had 1001 things to do.
Dr. Snell took over the Leadership position and kept the Committee focused and moving. The former leader whose name escapes me know was humorous and compassionate and a great storyteller but he did tend to ramble. Dr. Snell, while bringing his own sense of humor to the occasion, kept the Committee on point. Noting the short amount of time given to patient presentations he actually asked the Committee to stay longer in order to take in more presentations – which they agreed to. The Committee did a very smart thing by cutting down the speakers introductions – giving the Committee more time to ask them questions.
Lenny Jason was the usual dynamo that he is and frequently brought up intriguing topics. ( I thought I noticed Dr. Snell begin to reflexively glance towards Lenny’s corner every time he opened a topic up for discussion.) It’s going to be tough to lose Lenny next year; hopefully he’ll be able to stay on a bit longer. I think he should be asked (or, if necessary, compelled) to be a permanent member of the Committee.
Dr. Unger ‘s presentation for the CDC was troubling in that she stated she stood behind the 4 million person figure and seemed to imply that the empirical definition just needed to be explained better. When I talked to her, though, she agreed that it was a decidedly bad thing for the research community to split apart on how to define ME/CFS and noted the need to relook at the specific criteria.
Virtually everyone in the research community agreed on the need operationalize the Fukuda definition – ie find some way to quantify it – the problem was that the criteria by Dr. Reeves to do this – adding an emotional component and virtually discarding post-exertional malaise – shocked a lot of people. Kim told me she thought probably only one or two people at the CDC came up with the criteria (and maybe only one really – and you can guess who that was).
She did appear to question how cost effective the CDC’s patient registry was. (The CFIDS Association exposed how horribly expensive the CDC CFS patient registry was last year. Just getting patients into the registry cost more than the vast majority of entire studies done on CFS. It was so over the top that that alone would have been enough to get Dr. Reeves removed (See Registering Dismay the CDC’s Platinum Patient Registry).
Interestingly, she also noted that their data suggested that patients seeing CFS physicians tended to have a lot more comorbid illnesses than the patients picked up during their random sampling efforts. (In fact a subset of ‘CFS patients’ picked up during the random sampling surveys had never seen a Dr.!) My impression was that the CDC will start incorporating patients from CFS specialists into their studies.
I asked my perennial question – how can you spend so little money on a disease that affects – based on your estimates- 4 million people and I got the perennial answer – that’s way above my pay grade.
After being completely frustrated with Dr. Reeves Kim McCleary was cautiously hopeful about Dr. Unger. Dr. Unger has a strong pathology background and it’s not clear why the CDC would replace Dr. Reeves and then continue on the same course with Dr. Unger. I asked Dr. Miller of the CDC if the job opening had been posted yet. He said it hadn’t; when it is it’ll be open for about six weeks, then a review of the applicants will last at least several months. Kim said not to hold your breath about filling the position; she’d checked upper levels staffing positions across the CDC and found that a surprisingly large percentage of them were open – it’s going to take some time.
It was odd that no one (including myself) asked about what’s going with the CDC’s XMRV study which has reportedly been ‘in press’ for over a month.
CFS SEP A Drag Not a Help? The Special Emphasis Panel for CFS (CFS SEP) that reviews CFS grants at the NIH was supposed to give CFS researchers a leg up by providing panel members knowledgeable in the subject. Unfortunately panel members knowledgeable on the subject are pretty rare and grant acceptance rates are astonishingly low. It’s been odd to see Dr. Hoffeld, the former head of the panel, now retired , sit through every CFSAC meeting of the past few years. He apparently is still interested in the subject. I asked him how many grant proposals the panel typically got and he was unwilling to give a clear number but it sounded like it w as probably over 20 a year.
Dr Hartz, a member of the CFSAC, stated that after several efforts at the CFS SEP his study went through at the Alternative Medicine Panel and that Dr. Glaser’s big study – which he’s been trying for years to get through at the CFSAC – went through at a Cancer Panel. Dr. Hartz believes the CFS SEP panel is a drag on CFS research because it’s impossible to get enough researchers that are competent in the areas under discussion. The field is simply too broad to assemble a good enough panel.
Dr. Hartz’s project could have profound effects on how CFS is looked at in the medical community. He is examining treatment effectiveness rates in general practitioners, CFS specialists and alternative medicine practitioners. If he finds out that CFS specialists are more effective at treating this disease than other practitioners he can make a strong case against the CBT crowd. You can find his study here: