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).