My CDC team is very different from the present one. My CDC is a true leader in this field; my CDC is at the hub of the ME/CFS research effort, my CDC interacts extensively to benefit all. My CDC is a lean and mean and innovative team that we can all be proud of. What exactly does my CDC team look like? My CDC team:
Interacts extensively with research community at large. Always on the lookout for new breakthroughs my CDC communicates frequently with all different aspects of the broad ME/CFS research community. My CDC doesn’t just support efforts like the Whittemore Peterson Institute – its on the ground floor assisting them to get off the ground.… Read More
Our opportunity to impact the CDC’s CFS research program ends after tomorrow (June 30th) The CFID’s Association of America has just released a critique of the five year review that’s longer than the draft plan itself. It’s a very impressive forward thinking document that’s also a great resource for building your own critique of the program. Below is my take on the CAA’s major points.
Simply e-mail the CDC at CFSResearchPlan@cdc.gov to give them your input.
Program Lacks Innovation – perhaps the most damning criticism of a research plan is that it’s just not very good research. The CDC’s only major research project will use brain imaging techniques to assess the effectiveness of two treatments (CBT, Ampligen) that we already know are not the answer to ME/CFS; the program is not leading this field in innovation, it’s leading the field in picking up the pieces of other research efforts.… Read More
Dr. DeMeirleir made a big splash when he announced at a press conference that he had uncovered a new and important factor in chronic fatigue syndrome (ME/CFS) called hydrogen sulfide. What was lost in the flurry that followed was the fact that if it was not for an inquisitive mother of a daughter with chronic fatigue syndrome that press conference very well might never have happened.
Years before hydrogen sulfide had become even the smallest blip on the ME/CFS research community’s radar screen a rather remarkable woman named Marian Dix Lemle was developing a theory suggesting that it could lie at the heart of this disease.… Read More
CFS has a long and twisted history with the CDC but perhaps nothing in it has been odder than the strange story of their Patient Registry. This project involves contacting physicians in a small county in rural Georgia (Bibb County, population 150,000) and having them refer patients to the CDC. The patient is then screened by telephone to determine if they might have CFS or unexplained fatigue. If they might then they’re invited to spend a day taking tests at a clinic to determine if they do. The patients that end up with a confirmed diagnosis of CFS or unexplained fatigue will, potentially, be followed for a number of years to see how their disease progresses and will be eligible to participate in future studies.… Read More
Annette and Harvey Whittemore pulled off something of a miracle when they convinced the state of Nevada to help them build the first chronic fatigue syndrome (ME/CFS) research, treatment and eductation facility in the world.
The medical establishment, after all, has been almost as hostile to ME/CFS patients as the disease itself. The Whittemore-Peterson Neuro-immune Institute is an affront to the medical community’s disregard for this disease – a beachhold of hope that chronic fatigue syndrome (ME/CFS) patients can cheer about. But Annette Whittemore has always had a large vision and she wants more – much more.
What do armies do after they establish a beachhead in hostile territory?… Read More
“I was sitting there yesterday (during the CDC presentation) feeling like my head was going to blow off my shoulders”
The CFID’s Association of America has been leading the way on the CDC review. Kim McCleary sits through every CFSAC meeting – not an easy task in that often mostly empty room – and takes notes. It was the contrast between what Dr. Reeves said the program was going to do and what it actually did that apparently triggered their investigation. Projects that were supposed to start didn’t, others that started seemed to drag on and on and they seemed to have lost their zest.… Read More