CDC Grows MORE Isolated

September 20, 2009

Posted by Cort Johnson

It’s seems that the CDC has  figured this disease out. How else to explain their absence at the 3-day CAA/NIH sponsored brainstorming session recently held at Cold Harbor (“From Infection to Neurometabolism: a Nexus for CFS”). Thirty researchers from across the US and Canada were there but not one showed up from the biggest CFS team- not one.

This wasn’t how it was supposed to be. Just 6 months ago Dr. Reeves was raked over the coals by the CFID’s Association of America, the IACFS/ME and the CFSAC for his inability to play well with others. In May, sitting before the federal advisory committee on CFS (CFSAC )(and his boss) Dr. Reeves acknowledged he’d done a lousy job of communicating and collaborating and promised to turn over a new leaf. Since then he’s reneged on a promised summer International conference on ME/CFS management and didn’t send a single of his investigators to the first ME/CFS brainstorming session in years.

Doesn’t behavior like this raise a big red flag for CDC officials? Wasn’t collaboration one of the key aspects of the new plan? Or has the CDC simply been blowing smoke throughout the review process? In the six months since the Dr. Reeves mea culpa the program has only gotten more isolated!

Personal Issues Trump Results – The CDC has attempted to paint the patient outrage at the CDC’s simply as a campaign engineered by the CFID’s Association and Dr. Reeves animus towards the CAA is well known. His unwillingness to send a single researcher to the Cold Harbor conference suggests that’s it’s not about the patients or this disorder anymore; it’s about Dr. Reeves versus the CFID’s Association. Nobody said it would be easy for Dr. Reeves to mend bridges . Nor did anyone say that Dr. Reeves, himself, had to appear at the meeting but not having anyone show up there is beyond the pale. This is the very opposite of the collaboration Dr. Reeves.

One has to ask what the point of a program review is if nothing changes. It appears that very little has altered at the CDC over the past 10 years . Back then CDC officials ‘transferred’ (stole) funds earmarked for ME/CFS and used them for ‘real’ diseases. Now they’re just ignoring the programs failures and cutting its budget; different process – same outcome!

A Slap in the Face – Allowing Dr. Reeves to so quickly go back to business as usual is basically a slap in the face of both patients and researchers. The CDC is essentially saying we don’t care about your protests, we don’t care about the problems in this program” – you can holler all you want – we really don’t care.

Forcing Change – The ME/CFS Community will have to make the CDC care and they can; the CFSAC meeting on Oct 29th,30th will feature the top brass from the CDC , the unveiling of the CDC’s plan and a concerted effort by patients, researchers and professional groups to exert change. Patients will be able to participate via e-mail, phoning in, video and by being there.

We particularly need patients to show up in this meeting en masse to protest that they won’t stand for this. This is our last and best chance.

(A group called M.A.D. About ME/CFS has been formed to force change at the CFSAC meeting. To join the group register for the Phoenix Rising Forums (forums.ab outmecfs.org) and then click on the Community Tab and go to Social groups).

8 comments

{ 8 comments… read them below or add one }

Virginia Carmichael September 20, 2009 at 4:23 pm

Thanks to all of you who have the energy and mental ability to follow the politics and failures….from those of us who struggle to bathe, get dressed, keep and some semblance of life afloat! We read your information and appreciate all the time and energy necessary to pass it on!

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Alyson September 20, 2009 at 5:18 pm

I second Virginia’s comment. Thank you for keeping up with ME/CFS politics. Your post makes me sad and disappointed, but I am glad to be in the know.

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Chris September 22, 2009 at 8:10 am

This article led me to google the “Nexus” conference and to the SolveCFS newsletter of the CAA. The CAA’s historical failures in our illness, their recruitment of Dr. Vernon, etc., has concerned if not infuriated multitudes including myself.

That said, I came away from SolveCFS quite impressed, and not merely because they hired a new PR and are giving everything new titles and a new image. Some of the CAA-sponsered research sounds very promising. Most of all, though, is that they put together this Cold Harbor conference with NIH.

Not everyone will be impressed with the “old” stuff like the Faces coverage, or Klimas on probiotics. What is impressive is the historical account of recent engagements with the CDC, and moreover, the new concerns being addressed, such as the combination of pathogens and vaccinations.

The ‘V’ word can’t be overemphasized. In view of the autism lawsuits in this country, the hearings on MMR vaccines in the UK, the controversy over Lymerix, and the 18 years it took our government to admit that Gulf War Illness was real and that vaccines were a major factor in it… As WPI is working with CAA, I’m encouraged that it’s not merely for political reasons, but that CAA is really doing an about face with or without the CDC, and Dr. Vernon may in fact have taken off her CDC hat. In turn, one senses a sea change in at least part of our government.

Cort’s taken a lot of heat for supporting CAA. Thanks for your support and a great article.

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Keith B... September 22, 2009 at 8:25 am

I swear they just don’t want to collaberate because it will deviate them from there preconcieved notion of what CFS is or is not. I still feel the CDC agenda is minimize the illness and link it as much as possible to stress/depression and psychological illnesses. It reminds me of the old X-files ” the Truth is out there”. But the CDC doesn’t want to look for the truth. The truth needs to be crammed down there throat.

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cort September 22, 2009 at 12:35 pm

Thanks Chris,

I think as you see more and more of Suzanne Vernon that you will be more and more impressed. She has an enormous amount of energy and passion. Its no coincidence, either, I don’t believe, that the CAA dug into the CDC not long after she came on board -she must have contributed heavily to that effort.

Check out this page regarding Dr. Vernon’s latest efforts.
http://aboutmecfs.org/Conf/IACFS09Vernon.aspx

While the CAA has not accomplished as much as we all might have wished they have had some major accomplishments. I keep coming back to the resource question – do we give them enough resources for them to be truly effective? A couple of years ago Kim McCleary told me they had the resources to focus on either the CDC or the NIH at one time – not both. I believe her; she’s very hard working and she’s married to someone who’s mother has had ME/CFS for decades and was a passionate spokesman for our cause. I think she’s very dedicated to this cause.

Yes the CAA could be more enrolling but I think we have to look at whether we’re all looking at the big picture here; there is only one group thats trolling the corridors of the Capitol -without them we’d be utterly unrepresented there. They’re in a tough battle; the bureacrats at the CDC and NIH aren’t in the slightest bit interested in helping us. When you only have a small handful of patients supporting them and they’re in that kind of environment I’m not sure how much they can get done.

The pisser for me is is that DC is where the money is; mountains of mountains of research dollars are sitting there if we can just get ahold of them. But that will take putting more and more pressure on the NIH and CDC – more patient advocacy, more clout from the CAA and so on.

Here I go off focus!

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Dr John Whiting December 24, 2009 at 6:32 am

Dear Cort,

I am surprized that the CDC has not yet had a negligence lawsuit lodged against it. I do not believe that the CDC pays any attention whatsoever to our rhetoric, however valid it might be. The CDC barely pays lip service to ME/CFS because it ‘knows’ better. It is all “Oh Hum’ for them, and as there is no pressure on them to change, it will continue to remain business as usual. There appears to be a culture of blind arrogance of almost sociopathic proportions here.

WHAT more can I say?

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admin December 24, 2009 at 2:43 pm

A negligence lawsuit….what an interesting idea. It would probably be thrown out but it would get the word out….. It’s amazing that the CDC will not only not follow the recommendations of the IACFS/ME and CFSAC and CAA but it completely ignores them! It doesn’t respond in any matter. Its almost as if they weren’t there. My guess is that they just don’t give a darn about CFS. How else to explain their lack of action and the way they’re destroying the program through ever lower and lower funding?

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bluebell January 1, 2010 at 8:44 am

One thing I learned from law school, before dropping out because this disease, was that governmental agencies are immune from this kind of suit – unless sued under a law in which congress specifically authorized private suits. Somebody will doubtless try to jerry-rig a case out of the meager laws available, but there is a 99%+ probability that it will fail. Suit against one of the officers (and I can guess which one) would be easier, but you would have to prove that the officer broke the law (was not just negligent, mean or stupid). Energy would probably be better spent elsewhere – though, obviously, I understand the desire to hold someone accountable.

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