The CFSAC on Itself, XMRV, the CDC and More

May 13, 2010

Posted by Cort Johnson

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:


{ 5 comments… read them below or add one }

Alex Young, Australia May 13, 2010 at 6:25 pm

The comment on the NHLBI XMRV study about the timing of collection and preparation is very important. It is possible that this is a critical factor in finding XRMV in blood samples, and may explain how so many studies failed to find it, especially from old stored blood. I will be interested to hear more when the information becomes available. As usual, this is an excellent blog. Thank you Cort.


Tina May 13, 2010 at 7:18 pm

“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:”

Is there a link missing?


Nancy Henson May 14, 2010 at 7:46 am

Thanks so much Cort. My newsletter for this month is a busy one with links to many articles including yours, of course. I may have already mentioned this but it is worth repeating… in my opinion that after 25 years with this crap, I am too old to participate in the first collection of blood samples from CFS docs. I am Dr. Lapp’s patient but because I’m 70 (not 65 or younger) I am disqualified.

Of course, there will be more studies….but how long am I going to be around since our life span take a hit when we have this disease?

Good job as always….Nancy


KAL May 14, 2010 at 7:57 am

Dr. Jerry Holmberg is the Senior Advisor for Blood Policy in the US Department of Health and Human Services and a member of the Blood Safety Advisory Committee. In that capacity he does work with the NHLBI, but is not an NIH employee. The chair of the xmrv scientific research working group is Dr. Simone Glynn of the NHLBI which is housed with the NIH.

In a recent WSJ article on XMRV and the blood supply Dr. Glynn sat on the fence saying, “There is a balance to what we are doing,” says Simone A. Glynn,
branch chief of transfusion medicine and cellular therapies at the
National Heart, Lung and Blood Institute and chairperson of the XMRV
working group. “You do not want to transfuse an infectious agent that
causes problems. But you do not want to take blood out of the system
that is not causing any problems.” Dr. Holmberg did dance around the question at the CFSAC meeting, but finally said he didn’t think the impact of banning blood donations from diagnosed CFS patients would be significant.

Just an FYI, here is a 2008 bio on Dr. Jerry Holmberg:

Dr. Jerry Holmberg has more than 30 years in all areas
of laboratory medicine, but most specifically in blood
bank operations and policies. Prior to his military career,
he taught senior level medical technology and pathology
courses at Michigan State University and Bowling Green
State University. Between 1980 and 2000, Dr. Holmberg
served in the U.S. Navy, achieving the rank of Commander.
During that period, he held various positions directing
blood banks, blood donor centers, frozen blood bank
depots, and programs affiliated with the U.S. Navy and
U.S. Department of Defense. In 2003, the U.S. Department
of Health and Human Services Secretary Tommy
G. Thompson announced his appointment as Senior
Advisor for Blood Policy and the Executive Secretary for
the Advisory Committee on Blood Safety and Availability.
He continues to hold that position, where he makes
recommendations to the Secretary and the Assistant
Secretary for Health regarding blood and blood products.
Dr. Holmberg received his Ph.D. in Biological Sciences
from Bowling Green State University.


KAL May 14, 2010 at 5:22 pm

According to a 2009 report by Trust for America’s Youth and the Robert Wood Johnson Foundation, F as in Fat: How Obesity Policies Are Failing in America 2009, Georgia has the third highest obesity rate with 37.3% of Georgia’s children ages 10 -17 being obese or overweight.

In 2007 the CDC released behavioral health survelliance data on adult obesity in Georgia by county. According to the CDC data Bibb County has an adult obesity rate of 31 % placing it in the highest one third of counties by weight.

According to the CDC, obesity is defined as a body mass index (BMI) of 30 or greater. BMI is calculated from a person’s weight and height and provides a reasonable indicator of body fatness and weight categories that may lead to health problems. Obesity is a major risk factor for cardiovascular disease, certain types of cancer, and type 2 diabetes.

In 2008 the CDC noted that out 50 states, eight had a obesity prevalence of 30% or more a number that did not include Georgia. Since CFS patients come from all over the country as well as from counties in Georgia that do not have obesity prevalence rates of over 30% it may well be that Bibb County rates artificially raise the percentage of CFS patients who are overweight and or have a tendency to have metabolic syndrome – only one of which of the indicators is weight related.

According to the American Heart Association metabolic syndrome is characterized by a group of metabolic risk factors in one person. They include:

* Abdominal obesity (excessive fat tissue in and around the abdomen)
* Atherogenic dyslipidemia (blood fat disorders — high triglycerides, low HDL cholesterol and high LDL cholesterol — that foster plaque buildups in artery walls)
* Elevated blood pressure
* Insulin resistance or glucose intolerance (the body can’t properly use insulin or blood sugar)
* Prothrombotic state (e.g., high fibrinogen or plasminogen activator inhibitor–1 in the blood)
* Proinflammatory state (e.g., elevated C-reactive protein in the blood)

The dominant underlying risk factors for this syndrome appear to be abdominal obesity and insulin resistance. Other conditions associated with the syndrome include physical inactivity, aging, hormonal imbalance and genetic predisposition.

There are no well-accepted criteria for diagnosing the metabolic syndrome.
The American Heart Association and the National Heart, Lung, and Blood Institute recommend that the metabolic syndrome be identified as the presence of three or more of these components:

* Elevated waist circumference:
Men — Equal to or greater than 40 inches (102 cm)
Women — Equal to or greater than 35 inches (88 cm)
*Elevated triglycerides:
Equal to or greater than 150 mg/dL
* Reduced HDL (“good”) cholesterol:
Men — Less than 40 mg/dL
Women — Less than 50 mg/dL
* Elevated blood pressure:
Equal to or greater than 130/85 mm Hg
* Elevated fasting glucose:
Equal to or greater than 100 mg/dL

Since the 1990s the AHA has been focused on behavioral or lifestyle modifications thus their recommendation for managing both long- and short-term risk, lifestyle therapies are the first-line interventions to reduce the metabolic risk factors. These lifestyle interventions include:

* Weight loss to achieve a desirable weight (BMI less than 25 kg/m2)
* Increased physical activity, with a goal of at least 30 minutes of moderate-intensity activity on most days of the week
* Healthy eating habits that include reduced intake of saturated fat, trans fat and cholesterol


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