Too bad we can't send him the elf version of him (Reeves) dancing hip-hop to "We Wish You a Merry Christmas" that Kim did - Geez that was funny!!!! I can't find it now, but would love to repost it!:Retro tongue:
Who can claim credit for Dr. Reeves' departure from the CFS program at CDC? Personally, I doubt we will ever know.
Maybe it was a result of the pressure applied by advocates, including the CFIDS Association, the IACFS/ME and individuals. Maybe it was a result of the embarrassment caused by Reeves' comments to the New York Times about XMRV. Maybe it was the result of CFSAC members making such strong statements about program leadership at the committee's last meeting. Or a combination of any of these. Or none of these. It may also be possible that Dr. Reeves' moved to his new position for his own reasons, and of his own volition.
All of this is pure speculation. Unless Reeves decides to speak about it, I doubt CDC will ever comment publicly about this personnel change, and it may even be against personnel policy for them to do so. (that's speculation too)
What matters is what has always mattered: making significant scientific progress towards solving CFS. I hope Dr. Unger will be a strong partner in this effort, but that effort will continue in any case.
Happy? Oh yes, I'm happy! This is an opening, an opportunity that must be seized! All of the advocates who spoke out on this issue can't take too long to catch our collective breath. Keep. Moving. Forward.
"Senior Advisor" sounds like Reeves is a consultant and not full-time fed employee
Reeves as "Senior Advisor" sounds like he is a consultant now and not a full-time government employee. I have to wonder if they are easing him out of the CDC and forcing a retirement by allowing him to be a "Senior Advisor". Time will tell if he is indeed forced out.
"The U.S. Centers for Disease Control and Prevention (CDC) has announced that Dr. William C. Reeves, head of the agencys CFS Research Program, will be taking a new position within the agency effective Feb. 14, 2010 and that he will no longer lead the agencys CFS research. Dr. Elizabeth Unger will serve as acting chief of the Chronic Viral Diseases Branch, the unit within CDC that houses the CFS Research Program. On Feb. 14, Dr. Reeves will begin an assignment as Senior Advisor for Mental Health Surveillance in the Public Health Surveillance Program Office within the CDCs Office of Surveillance, Epidemiology, and Laboratory Services."
I'd love to know how this came about, but I agree with Jennie that we will probably never know. I wouldn't believe Reeves anyway.
I appreciate everybody's efforts toward this goal anyway and hope things improve greatly there.
All the data in here is from the CFIDS Association's investigation
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 theyre 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.
Thats all well and good; no ones complaining about the idea of having a patient registry or tracking a patients progress over time. (But then again no one would object to the idea of building a bridge to join a small island community to the mainland.) The problem is the cost. The CFIDS Association of America, particular, has had trouble swallowing how much this bridge the CDC is building to the patient community has cost. Yes, medical research is expensive but the money the CDC has been shoveling out is incredible. Youve heard of the Golden Toilet? Welcome to the Platinum Registry.
Simply to get Abt Associates to develop the Patient Registry on paper cost the CDC a whopping $1, 413,000. Lets put this in some context. $1,413,000 is about half the entire budget of the NIHs ME/CFS research program . The CFIDS Association of America is funding six pilot studies for less than $1 million. The Whitmore Peterson Institutes annual budget is $1 million.
Before a single doctor filled a single test tube this project was already one of the most expensive studies ever undertaken in this diseae. Did we mention that this, too, is a pilot study? According to the CDCs webpage The Registry is a one-year pilot study. Hold onto your horses. We havent even gotten past the paper stage yet let alone to that first year.
The next step involved having Abt produce a statement of work (SOW). SOW s contain the nitty-gritty of the project; it includes such things as project timelines, specific budget requirements , etc. This must have been a very difficult document to get together since the CDC paid Abt. almost $600,000 ($583,767) to do it.
Obviously somethings gone very wrong here. Were not talking about small overruns; this is more like defense contractor type stuff. Many large studies - with their planning, laboratory costs, patient recruitment, data analysis and publishing dont cost $600,000. (And were still in stage two of the planning stage). If Abt charged the CDC $50 an hour to produce this document it took them $12,000 man-hours to do it Thats six people working 40 hours a week (no vacations) for a year. (On the other hand it did take them a year to simply put the SOW together).
These figures obviously dont even begin to make sense. What was going on here? Its possible Dr. Reeves funnelled money for the entire project into the first two payments. (If thats true then Abt was allowed to sit on an enormous amount of money for several years as the project wouldnt even begin for another year and a half after the SOW was completed. CFIDS Association has noted that several payments came just before the end of the CDCs fiscal year when the CFS research program may have had money left over. In any case it points to a grand budgetary mess.
The next year the CFS team would spend almost $200,000 on the Patient Registry doing some focus groups . It wasnt until that was done in the fourth year after the project had began that Dr. Reeves submitted it to the Office of Management and Budget for approval. Somehow one of the most expensive project in ME/CFS history essentially got paid for before it was ever approved. No wonder the CDC has been under attack for mismanagement.
Not Research But .. But calling this project a research project is entirely inaccurate -no research will be done here; all this 2+ million dollar I year project will do is provide patients for the CDC to study. The only research this project will engage in is determining whether a patient has CFS are not.
Not that this matters to the participants in the study; none of them will ever be told if they have CFS or not. Thats right. Despite CDC statements that getting treatment early in the course of this disease none of the participants in their study are going to be told if they actually have it.
If we were talking about AIDS research a million dollar overrun or so wouldnt merit mention. But this is ME/CFS a disease that already sits at the very bottom of the federal government funding priorities. This is a disease the federal government spends only about $6 a year per patient on. A disease thats suffering dramatic declines in research funding. A disease that the CDCs own staff admits is receiving 25% less funds that it was 10 years ago. At this level wasting money can really matters.
Opportunity Cost Opportunity Lost The evidence suggests that Dr. Reeves has spent so much money getting patients into this registry that he has little money to do much with them afterwards. According to the Five Year Draft Strategic Plan the biggest CFS research effort on the planet will be engaging in just two laboratory research projects over the next five years. It appears that a good chunk of the money the CDC has and will spend on research will simply go to finding the right patients.
A Cadillac Researcher on a Pinto Budget? Dr. Reeves has always had bigger plans for any ME/CFS than his budget warranted. He initiated a very expensive random sampling scheme to gather his patients in the late 1990s. Then he created a definition that inflated the patient base so much that efforts to subset them became mandatory. He argued that the criteria and the bloated population figures were irrelevant - that once patients were being rigorously measured the subsets should pop out. Yet the big studies needed to ferret out those subsets were never done and five years and at least $40 million later subsets are still not popping out at the CDC. Instead of the increased rigor and the clean slate we were promised were left with a huge population of CFS patients that the research community has no faith in and a definition that needs and apparently will be redone.
Hitting the Wall Dr. Reeves big vision worked OK when he had payback funds to play with and when he and his research team were able to find collaborators to make up for the programs big upfront expenses but the CDCs research team now appears to be hitting the wall. Dr. Vernon, the programs lab chief left and has not been replaced and another member of the team that recently left has not been replaced either. At a time when this program desperately needs collaborators to maximize its reduced funding levels the only people its collaborating appear to be charging Cadillac prices for their efforts.
Abt Jumps In. Undoubtedly overjoyed at the results from their past efforts Abt. Associates opened a new branch in Atlanta in July , 2008 specifically to drum up more business from the CDC. Kathleen Flanagan, Group Vice President for Social, Economic and Health Policy at Abt Associates statedWe are confident that our new Atlanta office will enable us to strengthen communications with our CDC contacts, maximize project continuity, and enhance both the effectiveness and cost-efficiency of our project work.
Who would not want to take advantage of research program that paid over $2 million to develop a protocol and a statement of work? A research program that will doesnt, from what we can to tell, appear to mind seeing start dates pushed back again and again? That is willing to allow a firm to take a year to develop a Statement of Work. That appears to respond to delays with even more infusions of money? Given Abts apparent windfall with their last CFS project its not surprising that the chronic fatigue syndrome was featured prominently in their press release. So long as the CDC is acting like a cash cow they are, like any good business, going to do their best to milk it.
The Patient Registry What has happened to the Patient Registry? It opened in September 2008. Its apparently enrolling patients and will run for one year and then it will be over