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CFIDS Association President Kim McCleary Rips CDC Management of Chronic Fatigue Syndrome Research Budget

  [ 5 votes ]   [ 4 Comments ] • November 7, 2008

You’re all familiar with the infamous ‘Bridge to Nowhere.’ Let me introduce you to what I call the ‘Research to Nowhere.”Kim McCleary

The CFIDS Association’s November 2008 CFIDSLink e-newsletter, just out, provides a timely summary report on proceedings at the Federal CFS Advisory Committee Meeting - held in Washington, DC, October 28 and 29.

Serious Funding Issues Reminiscent of 1998

One highlight of the report is a transcript of CFIDS Assoc. President Kim McCleary’s straight-from-the-shoulder testimony to the CFSAC, presenting a detailed analysis of the CDC’s CFS research budget spending and oversight since 2004.

Though McCleary had originally planned to discuss public/private CFS research & education partnerships, she instead felt “forced to confront serious funding issues with the CDC research program, just as we were 10 years ago, in April 1998.” (When it was determined that $12.9 million reported as spent on CFS research was actually allocated to other programs.)

According to the CFIDSLink Report, and as detailed in her compelling testimony, McCleary:

• “Questioned CDC leadership, accountability and performance related to three contracts the CFS research program funded totaling more than $9.8 million that produced few results in 4 years.”

• “Stated that her testimony followed an extended series of discussions with CDC and that information about spending and obligations was provided by CDC, but it was not critically assessed by those with authority to alter the ineffective commitment of large amounts of money to unproductive contracts.”

• And “expressed concern about the peer review and urged the Committee to make recommendations that would lead to immediate corrective actions.”

A Mix of Hopeful News and Other Concerns

Though much hopeful news was exchanged during the meeting - such as the Trans-NIH CFS Working Group’s plans for a State of the Knowledge conference for CFS in 2010 - other concerns, as noted in the CFIDS Association summary, include the following:

• “Dr. Eleanor Hanna, representing the National Institutes of Health (NIH), commented that NIH does not have confidence in the new definition for CFS being used by CDC and that it had resisted using the higher prevalence figures in its materials for that reason. She conveyed her concern that the use of different definitions made it difficult to compare results from CDC-funded research and NIH-funded research, and that this would present greater problems as treatments are studied.”…

• “Dr. Nancy Klimas remarked that CDC studies of psychiatric stressors were “way behind the times” and that the “emperor has no clothes” when CDC’s long-term studies of patients don’t produce any data about the long-term risks associated with CFS.”…

• “Dr. Leonard Jason, chairman of the CFSAC’s research subcommittee, requested data about the success rate for CFS grants after each step in the review session; [the NIH’s Dr. Eleanor] Hanna replied that she cannot provide such information without a request from Congress, and suggested that he should continue his dialogue with officials in NIH’s Center for Scientific Review (CSR).”…

As for the future, “[Dr. Steve Monroe, director of the Division of Viral and Rickettsial Diseases] confirmed that [Dr. William] Reeves was still actively involved in the research program and indicated that the peer-review of the program would take place November 5-7, after which CDC leadership would be making some important decisions about the future direction of the program.”…

Transcripts of Other Presentations Submitted as Public Testimony Include:

A proposal by CFIDS Assoc. Scientific Director Suzanne D. Vernon outlining the benefit of a coordinated national CFS research network of government, academic, and private entities, guided by a clear understanding of the CFS research priorities, and sharing data, findings, and specimens.

Researcher Marian Dix Lemle’s explanation of her intriguing hypothesis that dysregulation of hydrogen sulfide metabolism in the cells’ energy generating mitochondria plays a role in the multi-system disturbances of ME/CFS.

CFS patient Brian Smith’s testimony regarding the economic burden patients bear when unable to work, and the need to explore difficulties associated with efforts to obtain Social Security Disability benefits (in stark contrast to other disabilities such as MS or limited vision).

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Article Comments Post a Comment

This is not acceptable
Posted by: outofstep
Nov 7, 2008
It is absolutely outrageous that the CDC is (apparently) once again squandering research money for CFS. From the very beginning they have treated CFS like it is a joke, unworthy of their attention. Now over 20 years later they are still plodding down the same, wrong research path. Calling people in Georgia and asking them if they are tired is not valid CFS research at this point. The CDC's case definition is inaccurate-why do they refuse to adopt the more accurate Canadian case definition? The CDC's emphasis on psychiatric research for CFS is outdated and not useful, particularly in light of recent genetic research-why aren't they looking at viruses? The CDC should be ashamed of its track record, and needs to look at how much progress the private sector, in partnership with other government agencies and universities, has made in discovering a test, treatment and cure for CFS. Then the CDC needs to model itself after people who are accountable, and who actually care about CFS patients. If the CDC continues to mismanage the millions of dollars that they are given, then that money should go to researchers who will value it and put it to better use. Thank you Kim McCleary for fighting for us.
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CFS, CDC, NIH, e i e i o....
Posted by: Leaknits
Nov 10, 2008
copied from article's page: “Dr. Leonard Jason, chairman of the CFSAC’s research subcommittee, requested data about the success rate for CFS grants after each step in the review session; [the NIH’s Dr. Eleanor] Hanna replied that she cannot provide such information without a request from Congress, and suggested that he should continue his dialogue with officials in NIH’s Center for Scientific Review (CSR).”… ***************************************************** The success-or-failure results of CFS grants sought is a NIH-held SECRET? Why? Those who need to know results must go through the slowly-moving Freedom Of Information Act (FOIA) process or something similar? The US Congress must request such results? Did NIH really say that? That's the way it looks to me... Again, why? And more words from the article: “Dr. Nancy Klimas remarked that CDC studies of psychiatric stressors were “way behind the times” and that the “emperor has no clothes” when CDC’s long-term studies of patients don’t produce any data about the long-term risks associated with CFS.”… ************************************ It's very possible I am reading the words of Dr Klimas incorrectly, and I hope I am... CDC is still saying that ME/CFS is a psychiatric phenomena? Might as WELL say "phenomena," since ME/CFS/Fibro are barely recognized as quote "illnesses," end quote. And, just to make sure no entity is left out of the Rage for Breakfast words, I'm not all that impressed by CFIDS Assoc., either. It seems that what CFIDS Assoc does, mostly, is send out requests for money from subscribers to its' newsletters. Most of us are living at or below the US-mandated Poverty Line and we are supposed to send $$ already stretched much too thin by economic constraints to an agency which turns up all too often, hand outstretched to us for more? The words above are MY opinion. Not Holy Writ. Believe or don't, the choice is up to the reader. However before jumping on me verbally please do some research. Same with those who agree. Research is key for what's wrong with too many of us and we must do it whether our drs with God Complexes approve or not. Lea.
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CDC Funding for CFS\ME\FM
Posted by: tommystone
Nov 13, 2008
It is my opinion that the CDC is covering up the reality of the rising, perhaps epidemic proportions of these related interconnected illnesses. One of the reasons is the Kansas study. The city chosen to represent a typical U.S. urban area is not typical as a North Eastern City where there is more industry and commerce. it would be interesting to know the numbers of those afflicted in other States. I do not believe the 3 to 5% of the population is affected as the report had found through their research. Secondly, the diversion of funds for research to uncover the cause of this illness is cause for alarm in itself. The length of time to obtain a diagnosis is due to the lack of information provided to frontline Doctors. My experience is 7 years. Numerous appointments and each time a report is written, sent to your primary Doctor, with no suggestion of treatment other then useless prescriptons designed for other illnesses and that for many, carry far too many side effects. The suffering, cost to the economy, burden to families and the percentage of teh population affected as compared to other illnesses is much more widespread, yet the other illnesses receive greater funding for research and have facilities to treat people. We have the same problem here in Canada as we move from Doctor to Doctor without any guide to treatment combined with the fact that their are no facilities (other then some private, unregulated that prey on us) where patients can be sent to utilize what we know today and bring some comfort and improvement in our daily lives. it is shameful. I suggest checking Canadian Websites and U.K. where you will find a clearer picture of what we are dealing with. Health Canada has recently released a revised consensus defining each of the illnesses, how to recognize them earlier and treatment options. We are targets as we will do anything to become well again. i suggest you obtain a copy of the Canadian Consensus for our illness and you will find it more informative. is a good place to find this 130 page definition and treatment options designed for Doctors and those afflicted. Or search for The 2004 Canadian Concensus report. i believe it has been updated and is available for download in pdf. Main thing I am trying to learn is managing my energy to avoid a crash. You may also find articles from one of the contributors to the document and highly respected Doctor specializing in this area Dr. Allison Bested. she has also written an easy to read book for Doctors and Patients that I found to be extremely helpful. She did not write the book for profit. it was written becasue in her words; this was the only way she could reach all of us who suffer. Her clinic is also underfunded. I did not comment on this article to promote a book, or Doctor. What I now know, and what i refused to believe or accept is this is a serious illness and if you suffer, you better develop a program for yourself to at least make it more tolerable until more research is done and hopefully this is treatable and not just your body shutting down. My belief is this is viral or bacterial (as i became completely ill after a bout of the flu and never recovered). Secondary to this, it may be that we are the "canaries" and our busy lives combined with Enviromental burdens may be the early warning of things to come. Lucky i am having a good day today as i would not be able to write this. Sorry i went a little off topic, but I believe this is the reason for the diversion of funds. This should receive the same amount of awareness as MS and others when statistics are compared as to how many in the population are affected. i did not check into the numbers but have read that our illness is as prevelant as many that receive greater attention. Tom A Toronto Canada
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CFSAC: Brian Smith May Testimony
Posted by: bjsmit1
Nov 21, 2008
For those interested in my CFSAC testimony in May, 2008, the following is a link to video of it: Also, here is the transcript of my testimony: TESTIMONY TO THE DHHS CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE: by Brian J. Smith May 6, 2008 Good Morning. My name is Brian Smith, and although I may appear like a healthy young man to you, please be assured, I am not. Chronic Fatigue Syndrome has stolen the last 13 years of my life, and continues, on a daily basis, to deprive me from any semblance of a “normal” life. Before I became ill with a severe case of mono during freshman soccer tryouts, I was a four-sport athlete, a 4.0 student, and a typical, All-American 15 year-old boy. During a time in my life that is developmentally vital, I spent over half of high school sick, in bed, with CFS. Not only did I miss out on the academic aspects of high school, but the important socialization that occurs with adolescence as well. I could not participate with my friends playing sports. I was too sick to attend Homecoming. I did not enjoy the luxury of having a high school sweetheart. This was not due to the inability to interact socially, nor the lack of desire to; this was due to the physical constraints that CFS placed upon me. During my late teens, and early twenties, it took nearly six years to achieve my Bachelor of Science degree. Not because I was the cliché undergrad, floundering along, afraid to enter the “real world” -- but because I was forced to withdrawal from classes, and take lighter course loads -- all because of the debilitating symptoms of CFS. Again, during a developmentally important time in my life, I did not have the liberty of participating in all the activities that young, college students typically do. It was physically impossible for me to go on dates, to attend sporting events, or to go to college parties with my friends. Because of CFS, I was a prisoner in my own body. Following college, I began working full-time at a large investment company. In less than one year, I had suffered a full relapse of CFS, and was forced to resign due to my disability. I loved my work, and would give anything to return to it. However, CFS has continued to ravage my mind and body, making this prospect an impossibility. I have aspirations of one day attending medical school; on the surface, I may appear as a sound candidate. I have satisfied all the major prerequisites, my GPA is solid, I have notable recommendations, et cetera. However, I must be a realist. The rigors of medical school would most certainly wreak havoc on my already CFS-weakened body, causing this dream to remain just that -- a dream. As a young American man, it is disheartening to not be able to participate in all the things that embody the “American Dream”. I watch from the sidelines as my friends and peers embark on their careers, get married, purchase their first homes, begin families, et cetera. While my peers are afforded this luxury, I am relegated to living in my parents’ basement. While most in my demographic are self sufficient, I am not, and likely will never be. Make no mistake -- this is not by choice. I want to work. I want to be successful. I want to one day have a family. I want to be a contributing member of society. I want all the things that CFS has deprived me of, and has caused me to be a spectator to. But given the current state of my health, as well as the inadequate response by the federal government, these things remain unattainable, and will likely remain that way -- unless this committee, the DHHS, the NIH, as well as the CDC increase their efforts, and treat CFS as the real and disabling disease that it is. At the age of 24, I was diagnosed as being hypogonadal, secondary to CFS -- likely the result of extended and frequent viral infection, according to my endocrinologist, as well as my immunologist. As a young twenty-something, I had to make the decision of beginning testosterone replacement therapy, which I am sure you realize, is a life long commitment. Many of you are also aware of the implications this decision can have on my ability to father children in the future, in addition to the long term consequences to my health. I do not need to explain the mechanism of how testosterone replacement often times terminates the male body’s ability to perform spermatogenisis. However, I do need to explain how difficult and unnecessary a decision of that magnitude is for a young man, at the age of 24. I do need to explain how difficult and unfair the decision to cryo-preserve semen is for a young man, at the age of 24. Please try to put yourself in my shoes. It is not easy to initiate a conversation with a potential girlfriend, explaining that due to CFS, I may never be able to father children. And even if a woman is able to overlook all of the other significant concerns that accompany CFS, breaching the topic of parenthood through in-vitro fertilization is colossal. I have had to make these choices. I have had to initiate these conversations. This is my reality. This is CFS. Over the past 13 years, I have dealt with the myriad of symptoms that compose CFS. Beginning as a 15 year-old, I have been forced to navigate through high school; then college, with its layers of bureaucracy; the tangled mess of the American insurance complex; differing physician opinions; treatment options, et cetera -- all while being significantly disabled by CFS. I have a tackle box filled with medication. Just traveling here was a struggle, filled with airport pat-downs and searches, because of the medication that allows me to possess some inkling of normalcy, in a life otherwise plagued with CFS, and all of the symptoms it entails. I have a 3 inch thick binder filled with the past 13 years of my medical history. And please, lest you jump to the conclusion that depression is the cause of all of my woes, know this: I am not depressed. I have been evaluated for depression on a number of occasions. I am frustrated -- frustrated with my health, frustrated with the lack of treatment options, and frustrated with the government’s inferior response to such a devastating illness. This is my life. This is what CFS looks like.
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