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Fighting for Fundamental Change since May 1999
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New progressive leadership needed for CFS at CDC
Posted by: Anonymous on Tuesday, September 29, 2009 - 12:00 AM
CDC Organization
Calls for new progressive leadership in CDC's Chronic Fatigue Syndrome (CFS) program and a more appropriate location in the CDC organization, as well as concerns about use of CDC funds for CFS.
COMMENTS ON THIS STORY HAVE BEEN TURNED OFF AS THEY HAD VEERED TOO MUCH TOWARDS PERSONAL ATTACKS
The HHS Scientific Advisory Committee for Chronic Fatigue Syndrome and the International Association for CFS/ME have formally recommended a change of leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education. They recommend "that the CDC needs to identify a CFS program leader who is a progressive, open-minded, and dynamic manager with a sense of urgency commensurate with the pressing needs of the CFS community." Based on estimates of increasing prevalence and the poor track record after 25 years of effort, the IACFS/ME is highly critical of the proposed 5 year strategic plan and urges that the CFS program be relocated to the National Center for Chronic Disease Prevention and Health Promotion which "contains the necessary expertise and leadership critical to establishing interventions to detect, control and prevent CFS."
Also at issue is the possible misuse of funds. Formally testifying before the CFSAC, Kim McCleary, President and CEO of the CFIDS Association of America, detailed concerns about the management of CDC funds allocated for CFS research.
Minutes of the DHHS Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, October 2008
Testimony of Kim Mcleary October 2008
CFSAC recommendations, May 2009
IACFS/ME's recommendations on CDC's 5 Year Strategic Plan for CFS Research, July 2009
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 01, 2009 - 10:27 PM It should be this way. But, think about this ---the very same public officials who may be embarrassed by disclosure are the same ones trying to keep a lid on the information, and keep it confidential. Who will ensure information is not hidden?
(Score: 1, Interesting)
by Anonymous on Oct 02, 2009 - 09:30 PM Science article coming out linking CFS to endogenous retrovirus. If we can't cure AIDS, will there be any better luck with this one? Don't think so. But the CFS advocates will still be whining to beat the band for miracles on the cheap.
(Score: 1, Interesting)
by Anonymous on Oct 05, 2009 - 05:36 PM Everyone wants miracles - advocates are most likely no different than anyone else on that score
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 06, 2009 - 07:16 PM
Isn't there a pill for that? Seriously, there is no easy answer.
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 10, 2009 - 10:10 PM So should we move the AIDS program to a Chronic Center too? And then what, Hepatitis C? What other infectious diseases should go to a chronic diseases center - all the ones that can't be cured?
Score: 1, Interesting)
by Anonymous on Oct 15, 2009 - 03:19 PM This particular type of virus is far less complex than the AIDS virus so they do believe that anti-virals can be cooked up quickly to clear it out and kill it off.
We know it does cause certain cancers and this has been known for more than just the last three years. In fact, this "virus" has been known at the CDC since about 1991 and yet the CFS shop did nothing with the data or research. So yes, we do know the advocates are going to be enraged with the CDC and with Bill Reeves in articular with this study and the data now just coming out that this virus was first discovered in 1991. Heads will fall after this study reaches more of the CFS advocates. Reeves and his people better get their resumes together and get out of Dodge quick! THEY, the advocates, are calling for Reeves head and Congress is involved, my understanding from a few folks up there. Not good. We don't need Congress on our backs again and this is going to do it.
Reeves: you really mucked it up for the rest of us. I need my job.
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 15, 2009 - 03:25 PM
We (I can't say where I work at CDC) do believe this is the case with CFIDS. We also believe that a single virus does in fact set off a number of other viruses that ripple through the entire body. We have quite a bit of data showing the damage to the body, including the brain, and it is frightening and compelling.
We also fear for the nation's blood supply and the fact that this "new" virus has been out there in the blood supply and out in the public unchecked for quite some time. There is great fear that a virus, like H1N!, might "set" this "new" virus off and either kill quickly or cause several cancers that seem to be in high proportion in the CFIDS people, as opposed to the general pop. WE are scared. I pray our worse fears are unfounded but that is not what the evidence is showing right now. Sorry, I have to remain anonymous. I too need my job since I have 3 kids in college and a wife out of work.
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 15, 2009 - 03:45 PM
This is why the administration is pushing for open government including the documents and studies that do NOT damage national security. We all know that the CDC is horrible about sharing data with outside organizations and researchers and this must change. Time and again I wish I had others outside the CDC who I could talk to and collaborate with on certain projects. But that's not the case here - yet. We will be forced into more openess and I think that is good. I too need the data from others and if I can't share what I have, then I get what others have.
I have watched the Reeves shop for about ten years now and shook my head at the antics that he and his people have engaged in. None of it was truly directed at CFS research, but instead, was useful to all chronic/acute diseases. Yet that money for CFS was wasted. The advocates are screaming that CDC knew of this virus back in the 90's and that millions are sick, disabled and dead from cancers, heart disease and suicide. This isn't a good situation and I have waited to see how long Reeves people could get away with this stuff and with the Emory Mind=Body Program. Reeves is cooked since they all believe that Reeves is getting paid from his contractors. But the advocates also think that money isn't really at work here - more a conspiracy of WHY Reeves and his people refused to work on real research and kept CFS in the psych arena. Boy is the proverbial STUFF going to hit the fan soon. I just don't understand why Reeves played this type of game for so long.
Re: New progressive leadership needed for CFS at CDC
Saturday, October 17, 2009 http://peggymunson.blogspot.com
"First, Do No Pharma" peggy munson
As Audre Lorde once wrote, the master's tools will never dismantle the master's house. In a complicated world of fast-moving virology, shape-shifting illness branding, and vaccine controversies, it is not always easy to find the master or deconstruct his toolbox. With the recent discovery that 95 percent of ME/CFS patients have antibodies to the retrovirus XMRV, the first master is obvious: the Centers for Disease Control. The CDC, as Hillary Johnson recounted in Osler's Web, swept aside (and distorted) the evidence of a retrovirus in ME/CFS patients that was discovered by Elaine DeFreitas in 1991. So ME/CFS patients are waiting for the CDC's counter-attack on this new XMRV science, which has been all-but-prophesied by CDC's CFS program director William Reeves' statements to the press. As he stated in the New York Times on the XMRV discovery, "If we validate it, great. My expectation is that we will not."
Personally, I'm also concerned with another tapeworm, the one that causes well-meaning Lyme patient-activists to call ME/CFS a "wastebasket diagnosis" when they have suffered from similar life-destroying vagueness, the one that causes people with chemical sensitivities to insist that viral propagation is always a byproduct of vaccines, mercury, pesticides, or bad diet, and the one that causes perfectly astute people to jot off blog entries claiming that "Big Pharma" is making up the connection between XMRV and ME/CFS just to sell vaccines.
What I see in that is a game of telephone in which generally astute people are doing the propagandists' work, not aware of how they are actually serving Big Pharma, the chemical industry, and the CDC. After all, projected vagueness and diversionary tactics are old hat for the CDCs ME/CFS program.
I, of all people, do not deny the harm caused by pesticides, mercury, or vaccines: I live in a virtual bubble due to severe chemical sensitivities that make it nearly impossible for me to be around anyone who has used Tide in the last two years. I grew up in the very Love Canal-ish landscape Sandra Steingraber wrote about in the seminal work on pesticide poisoning, Living Downstream. I also don't discount the importance of complimentary treatments or a good diet. My Mom opened up a charming, community-oriented health food store when I was a child, and I worked there for most of my working life until disability forced me into 20-something retirement. I sold supplements like a pro by the time I was fifteen. And, in 17 years of illness, I have tried almost every complimentary treatment imaginable for ME/CFS:
Reiki, acupuncture, shiatsu, craniosacral, chiropractic, homeopathy, and many more. I have even grown my own medicinal herbs and made them into tinctures, and I treat myself regularly with moxabustion and other techniques I learned in shiatsu school. I eat an organic, yeast-free diet, I take handfuls of supplements, I meditate, I get regular acupuncture and juice and do a modified Gerson therapy for detox -- and I have gotten sicker almost every year of the past 17 years. I now have, by anyone's account, almost no quality of life.
Mike Adams, of www.naturalnews.com, reminds me of those less-adventurous activists in the 60s who simply sold anti-war buttons instead of doing real protests. His article, "There's no such thing as a virus that causes chronic fatigue syndrome" states that the discovery of XMRV is but a conspiracy to pad the pockets of "Big Pharma." "Before long, that vaccine will be added to an ever-growing list of other vaccines already being forced onto the population, and the whole thing will be framed in the language of 'public health,'" he writes.
I'm always a little surprised when I scroll down to the comments of such an article and read about people's outright rejection of science because someone has uttered a catch phrase like "vaccines forced onto the population." But the public outrage seems to spin out of those catch phrases, distracting everyone from reading the more lucid articles that put the XMRV discovery into a rich context of funding scandals, ongoing science, and patients with oxygen tubes up their noses. Sure, there is plenty of conspiracy to fixate on regarding XMRV, but it has little to do with Big Pharma. I'm not advocating dangerous vaccines, but I also want to correct Adams on the facts. For one, the FDA has never approved a drug for ME/CFS. The one drug pending approval for this illness, Ampligen, has been held up by the FDA for the entire time that I have been sick, even being yanked away at times from the few patients getting it under drug trials and compassionate care. In fact, the FDA even rejected it as a booster for the H1N1 vaccine after it was found to be a useful additive against swine flu.
So to connect the suffering a ME/CFS patients who have no proven, viable drug treatments with the H1N1 vaccine frenzy is pretty outrageous. Also, the Whittemore-Peterson Institute, which made the connection between XMRV and ME/CFS, is a privately-funded, nonprofit institute that was started by a family so frustrated by the lack of money being put into research around this illness, as they watched their child lose her teenage years and her 20s to the ravages of ME/CFS, that they started a research facility. Lastly, Judy Milkovitz (the Whittemore-Peterson researcher who spearheaded the research) made an intriguing statement to The Huffington Post about how XMRV could make people more succeptible to toxic vaccines, rather than the other way around. She said:
"This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes -- the immune response cells, the B and the T cells. So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That's its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you've now broken the balance between the immune response and the virus. So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency."
So the idea that Big Pharma wants to put their greasy hands on ME/CFS just to make a vaccine is a little hard to comprehend, given their complete disinterest is an epidemic for decades. But what about the financial investment of complimentary medicine and supplements-of-the-week in this untreatable condition? I'm not surprised that Dr. Jacob Tietlebaum, who has made a small empire out of precariously blurring the lines between ME/CFS and idiopathic "chronic fatigue" and fibromyalgia, and sells his own line of supplements and a methodology embraced even by O Magazine, has also joined the "Big Pharma is the villain" ranks. On his blog, he writes about the unusually large amount of media attention XMRV has received: "Why else might this research get more attention? Could it be because the AIDS drugs used for that virus cost over $10,000 per year (multiply by over 2 million in the U.S. alone with CFS = $20 billion = CaChing!), and I suspect this will help to push it along. An exercise in how things work."
I always find it mind-boggling that doctors who sell expensive products out of their own offices (or from snazzy websites) can claim to be so financially divested. After I edited a published anthology on ME/CFS, my inbox was loaded with testimonials from people who had been "cured" from "chronic fatigue" using complimentary treatments that usually had a very obvious pyramid scheme printed under that ominous eye of their dollars. I'm not saying many of those treatments are not useful -- but to scare people away from conventional medicine when nothing else is working is another form of corrupt medicine. Some of the Big Pharma companies that now make and market nutritional supplements as well as drugs include Wyeth, BayerHeathCare, Unilever, Novartis, and glaxoSmithWelcome. Sure, some people may run out to get the H1N1 vaccine, and others may just take one of these company's Vitamin D supplements for flu prevention. The difference between those two group is that the second one thinks itself renegade.
Patients of other illnesses, who may be utilizing antibiotics, antivirals, painkillers, and sleep medications along with their supplements, should not be in denial about whose agenda they are serving when they call ME/CFS a "wastebasket diagnosis." The term chronic fatigue syndrome, as Hillary Johnson has written about brilliantly in her speech "The Why," was simply a brand name designed to create the very vagueness that has led to spin-off terms like "wastebasket diagnosis" and the blurring between idiopathic chronic fatigue (which affects up to 25 percent of the population) and ME/CFS (a devastating illness compared to the late stages of AIDS).
As Johnson describes how the illness was named with the very purpose of detracting attention from an infectious etiology:"Another investigator said, 'I prefer the term 'chronic fatigue syndrome' over 'chronic mononucleosis' because the latter implies an infectious etiology.'
And in every case, that was the crux: these collaborators voiced their antipathy toward lending the disease a presumed infectious etiology.
The public needed a big fat tranquilizing dart. This was crisis management, remember? 'CFS' soon emerged as the favorite. Defending the agency's choice to a large patient group, Holmes wrote:
“We believe that the use of such names as neuromyasthenia and myalgic encephalomyelitis are overly complicated and too confusing for many nonmedical persons.' Moreover, he continued, the name CFS, 'does not simply a specific association with any known etiologic agent.'
Are we talking science? No---We're talking public relations; crisis management; branding."
So I'd like to suggest that something much more insidious is going on with XMRV than "Big Pharma" and "forced vaccines" trying to squelch our medical freedom. Consider, for example, that the two kingpins in the government's efforts to hijack public awareness of ME/CFS and rebrand ME/CFS as a vague, hysterical ailment both went on to hold prominent positions in the fields of mind-body and/or alternative medicine: Stephen Straus, who led the NIHs denialist program of ME/CFS for many awful years went on to direct the National Center for Complimentary and Alternative Medicine with a 90 million dollar budget, and the CDCs ME/CFS program head William Reeves slithered his way into Emory University's Mind-Body Program. I don't think this is an accident. These guys, after all, showed no previous signs of having an Allen Ginsberg-level interest in mindfulness, nor even a hobbyist's fascination with sprouting. I really doubt that Straus or Reeves has ever shopped at Whole Foods. And I don't think they took those positions to squelch alternative treatments, but rather to use what they had already learned about crowd control to combine the patient-blaming tactics of their previous programs with the pathogen-blurring language of these new fields. When complimentary medicine folks write blog rants about vaccines and XMRV, believe me, Reeves is not threatened: he smiles knowing he has taught his Manchurian Candidates how to use diversionary grenades.
I see clever linguistic marketing here. In the 1980s, ME/CFS was laughed at as a "Yuppie flu," a notion that worked well in a period of proletariat-driven recession outrage. In the academic, identity-politics obsessed 1990s, ME/CFS was labeled a form of "fin de siecle [end of century] panic" and "hysteria" by a Princeton academic (a self-proclaimed "New Hysterian") named Elaine Showalter, who also managed to laugh at Veterans and people with memories of childhood abuse as she went around the talk show circuit. Then, in the new milenium, when even young women like Elizabeth Smart began to speak courageously about how their memories of abuse were not false and not wrongly remembered -- with their fathers standing proudly beside them, when women began to proclaim that their neurological deterioration didn't feel like fin de siecle panic any more, the tactics became both subtle and ridiculously brash, a tone that sounded a little like "it's not that we think you're crazy or hysterical, it's just that we think you should do cognitive behavioral therapy -- but not because you're depressed. We're sure some of your symptoms are valid: feelings, too, are valid. So have some Xanax."
Sometimes a moment in history perfectly whitewashes people's bigotry, making their uncomfortable feelings of disgust toward a group more palatable because they have now the right, condescending language in which to articulate their prejudices without looking bad. In an interview with the New York Times in 2001, Stephen Straus introduced America to the new millennium's language of ME/CFS as he talked about his position at the National Center for Complimentary and Alternative Medicine:
"Q. You've had a career of being very much 'where the action is' in biological research -- studying, among other things, the herpes virus and chronic fatigue syndrome. On the latter, can you answer the million-dollar question: does it exist?
A. Of course it does. But what is 'it'? Is it a single disease? I don't think so. Is it caused by an infectious agent? Very unlikely."
There isn't an infectious agent involved in sustaining the disease, as opposed to being a trigger for it. I think what we're calling C.F.S. might be the common pathway of how our body expresses a series of assaults on it. Some might be physical stressors and some might be emotional.
What's important about C.F.S. is many people get over it. Individuals who have it for many years lose hope. They then take on a series of maladaptive behaviors which sustain their illness because they become so focused and so phobic: they avoid exercise, disrupt their sleep patterns. It gets harder and harder for them to regain normalcy."
Welcome to the new millennium, when ME/CFS is just a series of maladaptive behaviors causing languor in rowboats -- this appeared at the Sydney International Airport before the 2000 Olympic games. Photo credit: A. Gotsis
Straus' slick statement that "C.F.S. might be the common pathway of how our body expresses a series of assaults on it" is one that is being repeated frequently in this era, particularly by writers interested in complimentary and alternative approaches to ME/CFS. How, exactly, is this scattering of the center any different from how wolves hunt prey? What Straus posits as the it-not-it of ME/CFS cleverly nullifies the very it he is speaking about. Which master's tool is this idea of the it-non-it, and why was it being used a decade after a retrovirus was found by Elaine DeFreitas in ME/CFS patients, which could have presented the same kind of unified theory that AIDS got when HIV was discovered, which could have led to (allopathic and alternative) treatments for this illness eighteen years ago?
Straus' seemingly non-centrist it-non-it approach seems to appeal greatly to people with a complimentary bent, who want to embrace the holistic reality of environmental poisoning and other horrors in our modern world. But I'm not sure this non-centrist approach reflects the tradition of complimentary medicine. Sure, Traditional Chinese Medicine is often known as the web that has no weaver, but it still recognizes heat. It still recognizes pulse diagnosis. And someone is feeding the fire here, both of this illness and of the propaganda around it. Who is the weaver, the man who can throw in words like "phobic" and "maladaptive" and "stressors" that "might be emotional"?
He's a man engaging in hate speech, who would sound perfectly at home at a eugenics-conference-turned-New-Age-convention. Moreover, it is just a short causeway between Straus making those statements in 2001 and William Reeves publishing psychiatric-driven ME/CFS research in 2009, many years after thousands of published papers have documented not only a non-controversial physical etiology, but a very severe and extraordinarily disabling one. I hesitate to even use the word "controversial," since the government's propaganda machine has been so successful in infiltrating the media with that word that most articles on XMRV and ME/CFS are still using it, acting as if the "controversy" wasn't settled decades ago. This, again, is a scattering technique of it-not-it, not to be confused with Zen no-self, and not to be confused with any technique that is mindful enough to see through bullshit.
As Hillary Johnson wrote in "The Why":
"'Hate speech is intended to degrade a person or group of people based on race, gender and also including disability or any other distinction that might be considered a liability. Hate speech incites acts of discrimination against the victims of such speech. Think of all that is denied M.E. patients as a result of being characterized as malingerers, attention-seekers, neurotic and emotionally weak, or as David Bell says, 'Nutballs and fruitcakes'?
How did the Soviet Union discredit its dissidents? It called them mentally ill. Labeling M.E. a psychiatric disorder is a political act, a form of social violence. Once people are so labeled, their authority is stolen; their credibility destroyed, their civil rights jeopardized. Books comparing their disease to fantasies of alien abduction are taken seriously but their objections are not.
CDC science is not legitimate science. It is the science of defamation, of marginalization, of disenfranchisement. It's Nazi science, its eugenics, and it's a disgrace."
Just this year William Reeves coauthored the following papers in scientific journals: "Psychiatric Comorbidity in Persons With Chronic Fatigue Syndrome Identified From the Georgia Population," "Childhood Trauma and Risk for Chronic Fatigue Syndrome," "An evaluation of exclusionary medical/psychiatric conditions in the definition of chronic fatigue syndrome," and "Are chronic fatigue and chronic fatigue syndrome valid clinical entities across countries and health-care settings?" Is it just me, or do these seem pretty far afield of the Dalai Lama's interpretation of mind-body connections and a little closer to how the ex-gay ministries used to talk about curing gays?
Thanks to this slick transition between subtle patient-blaming under the guise of alternative medicine to all-out psychiatric assault, the new millennium became a time of warmer, fuzzier-sounding hate. Hillary Johnson added:
"The crisis management approach to this epidemic stayed the same, but the tone, the language, did change. Agency employees realized they couldn't make jokes about the disease in public anymore. Compassion was the new stance. 'WE CARE' was the new message.
Aided by its now--very-large marketing and communications divisions, the CDC found a politically correct mantra to address the problem publicly. And it was this: The 'illness'---don't dare call it a disease---'posed a dilemma for patients and their families.' That's on their website right now.
Great PR wordsmithing: Convey compassion, but do not retreat from your position ."
To be told we have a vague diagnosis, that we're too stupid to resist Big Pharma and take a homeopathic remedy, and that our profoundly disabling, life-destroying illness is a mere "dilemma" hits the ME/CFS community like any other hate speech. We have experienced rampant discrimination as a patient community because of such beliefs. So I ask my friends in the complimentary medicine community: please don't deny our Vietnam, the one Hillary Johnson just declared victory over
-- don't throw it in the wastebasket because it doesn't jive with someone else's physical gestalt. Actual ME/CFS is, as CFIDS Association CEO Kim (Kenney) McCleary once said, like the first bars of Beethoven's Fifth Symphony: you know it when you hear it. There is nothing vague or wastebasket-like about ME/CFS when it has stolen everything you once loved and destroyed your chance at a career, at having babies, at traveling home to see your family. There is nothing vague about presenting with cardiac insufficiency on a test comparable to that of a Class IV heart failure patient, having another test that shows mitochondria energy production one-fourth of that of a healthy person, failing a tilt table test, having immunological abnormalities such as IgG subclass deficiency, and testing positive for various pathogens in the blood as I have done just in the last few years.
My greatest "dilemma" as a patient is that most of the medical establishment doesn't seem to care that I have almost died from this illness. One member of my own family, in a moment that can only be described as extremely Stepford, even asked me what I meant by death when I told her I was close to death from this. "I mean death death,"
I kept saying, but she could no longer understand what that word meant. And doesn't that say it all? That such PR helps the public embrace a comfortable denial about what they most fear?
When patients with ME/CFS hear our families speaking the language of Straus and Reeves, a language they read in some integrative medicine doctor's blog, or worse -- in some therapist's office who skimmed one tepid, patient-blaming article on ME/CFS in Psychology Today, we are destroyed. Patients talk about this with each other all the time, how our families will not care for us because they don't believe in the realities of our disability, how they have abandoned us, how they have broken our hearts and spoken to us with more cruelty than strangers.
This is what I mean by tapeworm: you know the masters are good when they can get right into your living room. Isn't that the whole point of advertising?
So who is our real enemy? I am not afraid of Big Pharma because they have, at times, given me restorative sleep, and not the lulling, insidious cultural sleep that Reeves is putting out, but the kind that induces dreams.
So I plan to continue my cordyceps and cat's claw and acupuncture. I will keep doing my routine of complimentary therapies that is really helpful for certain aspects of my illness, but I will also let the XMRV research feed the first surge of hope I have felt in years. I love the idea one writer etched in my mind by comparing XMRV to satellite radio (XM) in a Winnebago (RV). Even though I may never recover to the point that I can do this, I often fantasize about traveling across America in an Airstream to see my Grandma who has Alzheimer's and now lives in a nursing home. Grandma won't remember the decades of disinformation, but I'll be glad for that erasure.
http://www.cdchatter.net/index.php?name=Comments&sid=769&tid=13685&mode=thread&order=0&thold=1
------------end of insert
(Score: 1, Interesting)
by Anonymous on Oct 18, 2009 - 04:33 PM CRITICAL CFIDS MEETING W/ CDC
BY DHHS
----------------------------------------------------------------------
CFSAC Agenda - October 29-30, 2009
U.S. Department of Health and Human Services CHRONIC FATIGUE SYNDROME
ADVISORY COMMITTEE Meeting Thursday, October 29, 2009 9:00 a.m. to
5:00 p.m.
Friday, October 30, 2009
9:00 a.m. to 4:00 p.m.
Room 800, Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201
http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html
HHS has posted an agenda for the CFSAC meeting in Washington DC, this Thursday & Friday, Oct 29 & 30, 2009. Detail is sparse, but many suggest this event may mark a new chapter in ME/CFS research, and the world is invited to watch it all, live.
To Access and Print the Agenda...
http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html
The Event Will be Videocast Live on the Web...
Starting at 9:00 Thursday EDT (at http://videocast.nih.gov/) For the time where you live, use the World Clock Time Zone Converter Topics
Clearly Indicated in the Agenda...
. Dr. Daniel Peterson, MD, from the Whittemore-Peterson Institute, will give a presentation starting at 10:15 am on Oct 29 on "XMRV Association with CFS."
. Dr. David S. Bell, MD, will Speak on "CFS and FII/MBP" -- the issue of suspected "fabricated and/or induced illness in children/Munchausen by Proxy" as it relates to ME/CFS - at 3:30 pm .
Three public comment time slots, two on day 1, the third on day 2.
Several Time Slots for "Committee Discussion" are Listed for Both Days...
Though no topics are specified. Of particular interest, especially given the XMRV research, will be the CDC's 5-year CFS research plan, which reportedly is to be discussed in this meeting, and possible announcement of new CFSAC members to replace members who will step down in January. The retiring members are scheduled to make brief comments at the close of day 2.
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 20, 2009 - 09:33 AM
We aren't allowed to talk to anyone from outside.
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 20, 2009 - 09:38 AM
We can't replicate the XMRV study because our samples aren't from patients meeting the 1994 Fukada definition or the 2003 Canadian consensus definition. And in 2003 when we had all the tests done we didn't test for any of the well known immunological problems or viral loads so we can't even subgroup.
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 20, 2009 - 06:38 PM Dan Peterson's presentation on the new Virus study should be fascinating. They say it's going to be live on a webcast, guess we don't have to travel to DC to hear him.
He's one smart guy. ALL the data is available to researchers and the public if anyone is interested in reading it. Guarded, but this time they may well have cracked the code to CFS. One of our staff has a teen with CFIDS so he is very interested in this new study. His kid was on the JV football team and now is bedridden about 20 hours a day.
Makes a believer out of me since I have known this kid back to when his mother was pregnant with him. Shame. Fingers crossed Jon!
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 21, 2009 - 05:34 PM
Let's be honest here: The CDC/CFS groups does NOT want to replicate this viral study because it only makes Reeves, et al look even more pathetic. Get real. The data is out there and there is NO excuse for Reeves and his people anymore. NONE. A number of other research orgs are replicating and the WPI has the largest tissue bank going back to the Incline Village cluster. The above statement on XMRV just does not cut the mustard and the researchers and public know it. Knock it off. CDC/CFS/Reeves got caught big time and Dan Peterson will read the riot act in DC on the 29th of Oct. A good time will be had by all - except the CDC.
by Anonymous on Oct 21, 2009 - 05:37 PM
Oh, and it really does NOT matter if the CDC can or can't replicate since the CDC/CFS has been so discredited by a one year old institute that doesn't even have a building up yet. The CDC/CFS group's opinion is valueless now. Sorry, that's the truth. Read the blogs and posts on the Internet. No one cares what the CDC says about CFIDS. The anger out there at Reeves is stupifying. Sad really.
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 22, 2009 - 11:27 PM I know we aren't allowed to talk to anyone from outside cdc. And that's a massive problem for sharing research. Need to share data/research with the outside or WE get no where. This was supposed to change with new admin and cdc head. Isolation is the worst thing for research.
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 24, 2009 - 12:02 AM
The difference between AIDS and Hepatitis C and CFS (besides being incurable) is that doctors around the country KNOW how to treat AIDS and Hepatitis C. And if you've got the first two diseases, you don't have to convince an ignorant primary care physician that you're really sick. Persons with CFS have a difficult time finding practitioners who have any clue about managing this complex neuroimmune condition. So yes, in the absence of readily available medical care, some CFS or chronic neuroimmune disease centers are in order - for those who aren't lucky enough to live near a Dr. Peterson or a Dr. Klimas.
Score: 1, Interesting)
by Anonymous on Oct 24, 2009 - 01:28 PM Whining? Does this reflect the real attitude at CDC toward sick people? If so, this explains the complete lack of progress at the agency in CFS and other diseases.
Fire the people who think this way, and hire scientists who understand that they work for the people of this country.
Reeves needed to get the boot long ago, and others who use pop psychology to blame people for their own diseases, as though a bad attitude could explain bacterial and viral ailments symptoms.
I hope the new director is reading this website and gets out his new broom for a clean sweep.
THIS WAS THE ORIGINAL STUDY FROM THE LATE 1980'S THAT WAS KILLED OFF BY THE CDC AND NIH. DR. ELAINE DEFREITAS' REPUTATION AND CAREER WERE DESTROYED BECAUSE OF THIS AND THIS VIRUS ALLOWED TO CONTINUE ON UNTIL THE WHITTEMORE-PETERSON INSTITUTE UNDER DR. DANIEL PETERSON WAS REPLICATED. AND SO WE WONDER "WHY" THE PUBLIC HAS NO FAITH IN THE CDC?
WONDER NOT...READ.
=======================
Scientific papers
The 1991 DeFreitas paper
Abstract and Full text here:
http://www.pnas.org/content/88/7/2922.full.pdf+html
Proc. Natl. Acad. Sci. USA
Vol. 88, pp. 2922-2926, April 1991
Medical Sciences
Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome (Epstein-Barr virus syndrome/infectious mononucleosis/myalgic
encephalomyelitis/polymerase chain reaction/in situ hybridization) The Wistar Institute, 3601 Spruce Street, Philadelphia, PA 19104
Contributed by Hilary Koprowski, November 13, 1990 ABSTRACT Chronic fatigue immune dysfunction Chronic fatigue immune dysfunction syndrome (CFIDS) is a recently recognized illness characterized by debilitating fatigue as well as immunological and neurological abnormalities [Straus, S.E. (1988) J. Inf. Dis. 157, 405-412]. Once thought to be caused by Epstein-Barr virus, it is now thought to have a different but unknown etiology. We evaluated 30 adult and pediatric CFIDS patients from six eastern states for the presence of human T-lymphotropic virus (HTLV) types I and II by Western immunoblotting, polymearse chain reaction, and in situ hybridization of blood samples. The majority of patients were positive for HTLV antibodies by Western blotting and for HTLV-II gag sequences by polymerase chain reaction and in situ hybridization.
Twenty nonexposure healthy controls were negative in all assays. These data support an association between an HTLV-II-like virus and CFIDS.
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 26, 2009 - 08:58 AM
RESCIND rescindinc.org@gmail.com
Support the 500 Professionals of the IACFS/ME – Reeves Must Go
On May 27th and May 28th, 2009, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) convened in Washington, D.C. Among their recommendations to the Secretary of Health and Human Services was a call for new and progressive leadership at the CDC’s ME/CFS research division.
We, the public, need to back the IACFS/ME and the CFSAC. Under Bill Reeves’ regime, funding has routinely decreased and increasingly broad definitions which have ceased to have any clinical meaning or research value have been implemented.
Under Reeves’ direction the CFS program is being slowly strangled.
A couple of weeks ago, Dr. Judy Mikovits, who is a retrovirus expert at the Whittemore Peterson Institute, released the results of a study which provided overwhelming evidence that xenotropic murine leukemia virus-related virus, or XMRV, could very well be the third human retrovirus.
Mikovits found that in a study of 101 CFS patients, 67% were found to have XMRV in their cells, but this is really not new news. In 1991 Dr. Elaine Defreitas found retroviral DNA in 80% of her study’s 30 CFS patients. The CDC “replicated” her study, did not follow her exact procedure, and ended the study prematurely while ostracizing Defreitas.
What does Reeves say about Mikovits recent discovery? Without doing any study or due diligence Reeves dismisses the findings by saying that they are “unexpected and surprising” and that it is “almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS.”
Deceit and incompetence have increasingly become the order of the day. The money that Bill Reeves has been receiving has been terribly mismanaged as he desperately strives to forestall the slow but inevitable pace of biomedical research.
Inappropriate management of funds prevents collaboration with biomedical experts, as well as collaboration with psychosocial experts who are not trying to build a career in psychosomatic medicine.
Bill Reeves must be held accountable.
Inaccurate stereotypes persist because Bill Reeves has not been accurately educating the public on the seriousness of this disease.
CFS is not a disease of “feeling a little tired,” no matter what you call it; this is a severe neuro-immune disease of among other things, debilitating exhaustion completely out of proportion to exertion. Patients may be too exhausted to even be able to chew their food, leave their beds and much less even work – and remain so year after year. Is that your neighbor’s experience of tired?
Perhaps you suffer from CFS, perhaps your patients do, or perhaps a loved one does; your best interests are not and have not been at the heart of the CDC’s program. What’s at the heart of the program is job security for Bill Reeves, his paycheck and collaboration with his pals – not finding ways to combat and track this horrible disease.
We need you now more than ever. Right now is the first real chance that we have had in nearly 30 years to fight Reeves in force; to fight for you, your loved ones, or your patients. Everyone from researchers to advocates are in agreement – Reeves must go. And we must make it happen. No one will do it for us.
Join members of the IACFS/ME at the CFSAC’s October 29-30th meeting in Washington, D.C. Do not let the hard work of other advocates and researchers over the years be for nothing. We need to show that we cannot be silenced and we will never give up.
If you cannot personally attend, find someone to attend in your place. Ask your parents, your children, your spouses or friends to attend in your place.
Ask your elected officials to have aids attend.
The answer is always no if you don’t ask – we must make it happen – none of us can live with the alternative.
Reeves must go.
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 26, 2009 - 08:59 AM
We call on the Centers for Disease Control and Prevention (CDC) to stop using the “empirical” definition[1] (also known as the Reeves 2005 definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS research.
The CDC claim it is simply a way of operationalizing the Fukuda (1994) definition[2]. However the prevalence rates suggest otherwise: the “empirical” definition gives a prevalence rate of 2.54% of the adult population[3] compared to 0.235% (95% confidence interval, 0.142%-0.327%) and 0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition was used in previous population studies in the US[4,5].
The definition lacks specificity. For example, one research study[6] found that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the empirical/Reeves definition.
Reeves must go.
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 26, 2009 - 09:03 AM
THIS WAS THE ORIGINAL STUDY FROM THE LATE 1980'S THAT WAS KILLED OFF BY THE CDC AND NIH. DR. ELAINE DEFREITAS' REPUTATION AND CAREER WERE DESTROYED BECAUSE OF THIS AND THIS VIRUS ALLOWED TO CONTINUE ON UNTIL THE WHITTEMORE-PETERSON INSTITUTE UNDER DR. DANIEL PETERSON WAS REPLICATED. AND SO WE WONDER "WHY" THE PUBLIC HAS NO FAITH IN THE CDC? WONDER NOT...READ.
=======================
Scientific papers
The 1991 DeFreitas paper
Abstract and Full text here: http://www.pnas.org/content/88/7/2922.full.pdf+html
Proc. Natl. Acad. Sci. USA
Vol. 88, pp. 2922-2926, April 1991
Medical Sciences
Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome
(Epstein-Barr virus syndrome/infectious mononucleosis/myalgic encephalomyelitis/polymerase chain reaction/in situ hybridization)
The Wistar Institute, 3601 Spruce Street, Philadelphia, PA 19104
Contributed by Hilary Koprowski, November 13, 1990
ABSTRACT Chronic fatigue immune dysfunction
Chronic fatigue immune dysfunction syndrome (CFIDS) is a recently recognized illness characterized by debilitating fatigue as well as immunological and neurological abnormalities [Straus, S.E. (1988) J. Inf. Dis. 157, 405-412]. Once thought to be caused by Epstein-Barr virus, it is now thought to have a different but unknown etiology. We evaluated 30 adult and pediatric CFIDS patients from six eastern states for the presence of human T-lymphotropic virus (HTLV) types I and II by Western immunoblotting, polymearse chain reaction, and in situ hybridization of blood samples. The majority of patients were positive for HTLV antibodies by Western blotting and for HTLV-II gag sequences by polymerase chain reaction and in situ hybridization. Twenty nonexposure healthy controls were negative in all assays. These data support an association between an HTLV-II-like virus and CFIDS.
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 26, 2009 - 09:31 AM Sadly I must agree with the above. Maybe it is time for me to look for a new job elsewhere. I have heard the rumors and read some serious documents (from Congress, NIH, even CDC) on the topic of the CDC's involvement in CFS and I can only conclude that there is something very wrong going on with Bill Reeves and his staff. And what IS in fact going on with Emory University and the already defiled and damaged Med School Psych Department? The head of the Psych Dept at Emory Med school was caught with near about $2M from outside sources (Pharma, etc) and he did NOT report it. He was fired but not prosecuted. Something is rotten in Denmark at the Emory Med School Psych Department and it continues even after the departure of that scum ball. We are in medicine to HELP not make tons of money. If it was money we were all after then we ALL would have gone to law school or gotten an MBA, RIGHT???? Or am I just so naive?
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 26, 2009 - 12:36 PM Doesn't matter IF the CDC won't let insiders speak to outsiders as the news media has picked this story up and ran with it. EVERYONE is aware of it now. Was in the ER and heard a Dr. and PA discussing the new CFS virus. It is now out and about. Major networks and newspapers are running this story and for a period of time it was getting more attention than Swine Flu. Here is the link to the US News and World Report article on the Dr. DeFreitas study. US News/World Report is attacking CDC for destroying this viral study and this researcher's career/reputation. So, CDC people can't talk to outsiders, doesn't matter as the public and media are doing just that and FORCING THE ISSUE.
This is the link to the paper that Dr. Elaine DeFreitas wrote up in early 1990 and released in 1991 to the public. This document and her research were killed off by the CDC and NIH. Dr. DeFreitas' reputation and career were damaged and other's took note and did not study this virus any further for fear that their reputation and career would also be damaged by the CDC. The CDC MUST be investigated top to bottom and not just for CFIDS research and possilbe improper federal funding (again, as they did in 1999 and got caught and brought before Congress).
Dr. DeFreitas' resercha paper from 1991 is below:
Scientific papers - http://www.usnews.com/Articles
The 1991 DeFreitas paper
Abstract and Full text here: http://www.pnas.org/content/88/7/2922.full.pdf+html
Proc. Natl. Acad. Sci. USA
Vol. 88, pp. 2922-2926, April 1991
Medical Sciences
Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome
(Epstein-Barr virus syndrome/infectious mononucleosis/myalgic encephalomyelitis/polymerase chain reaction/in situ hybridization)
The Wistar Institute, 3601 Spruce Street, Philadelphia, PA 19104
Contributed by Hilary Koprowski, November 13, 1990
ABSTRACT Chronic fatigue immune dysfunction
Chronic fatigue immune dysfunction syndrome (CFIDS) is a recently recognized illness characterized by debilitating fatigue as well as immunological and neurological abnormalities [Straus, S.E. (1988) J. Inf. Dis. 157, 405-412]. Once thought to be caused by Epstein-Barr virus, it is now thought to have a different but unknown etiology. We evaluated 30 adult and pediatric CFIDS patients from six eastern states for the presence of human T-lymphotropic virus (HTLV) types I and II by Western immunoblotting, polymearse chain reaction, and in situ hybridization of blood samples. The majority of patients were positive for HTLV antibodies by Western blotting and for HTLV-II gag sequences by polymerase chain reaction and in situ hybridization. Twenty nonexposure healthy controls were negative in all assays. These data support an association between an HTLV-II-like virus and CFIDS.
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 27, 2009 - 08:48 AM If you are naive, then many of us are as naive as you. I came to be of service not to make money. And I can't/won't play political games and brown nosing. just want to do my job and be of value too. thanks for the info on the above. wasn't aware of the whole Emory thing but did know about the head of the Psych Dept getting nailed for all that Pharma money. For shame. And he taught young people? Now we see why the young ones are out to make a buck and not be true doctors and researchers. Not all, but more than I care to have seen and dealt with. Makes me grateful to have the mentors I did along the way - both in education and at CDC.
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 29, 2009 - 04:25 AM D-Day for Bill Reeves at the DHHS/CFSAC meeting, IF HE SHOWS UP!
House cleaning at CDC/CFS shop starts. Hary Reid's office informed and will be sniffy around at CDC just after the Health Bill is over and done with.
(Score: 1, Interesting)
by Anonymous on Oct 29, 2009 - 01:32 PM
They have moved the CFS work to the Virology department and away from Bill Reeves. Reeves is cooked, stick a fork in him. It's over.
Investigations into the CDC for the last 30 years of CFIDS neglect is now underway.
And the CFIDS sick and advocates KNEW that Reeves did not have the gonads to show up at the HHS/CFSAC meeting, Dr. Mike Miller went and had to listen to the attacks made against the CDC and Bill Reeves, over and over and over.
Very bad day for the CDC.
Re: New progressive leadership needed for CFS at CDC
(Score: 1, Interesting)
by Anonymous on Oct 29, 2009 - 07:16 PM
Reeves, the coward, did NOT show up but Mike Miller did. The screaming about Reeves and the CDC was loud and clear.
Apparently, the new CANCER-CFIDS virus will be replicared in the CDC Retrovirus lab. The virus has already been replicated in a number of private labs, so the CDC Retrovirus lab better play it straight. This has become a very serious situation and the public is mad, not just the CFS people but public at the CDC for various reasons.
Re: CFIDS (CDC/CFS) Moved to Virology and away from REEVES
(Score: 1, Interesting)
by Anonymous on Oct 29, 2009 - 07:20 PM
Wait! Is the Retro Lab doing the replication OR has the CFS program been moved to the Retro lab? The CFS program can't stay with Reeves, too much heat against him. Way too much heat against him and it's getting worse.
Re: CFIDS (CDC/CFS) Moved to Virology and away from REEVES
by Anonymous on Oct 30, 2009 - 07:23 AM
The damndest thing about this whole deal is that CFS patients, advocates, researchers and clinicians raise concerns about CDC/CFS. These concerns are ignored so they become criticisms. These criticisms are ignored which then become accusations. These accusations are ignored which then can become vitriol. Then the whole thing is disregarded as 'militant', hotheaded patients and such.
Anyways, even though the XMRV work is being done in the virology program, CDC is using samples obtained from the Wichita and Georgia GCRC studies, which most in the larger CFS community have strong reservations about whether or not these people would even qualify as CFS patients. They were selected using psychometric questionairres such as the SF-36 Role Emotional, which specify a reduction in activity specifically as a result of emotional disturbance and which have been shown in previous studies to have the least correlation with CFS out of all the SF-36 subscales.
A person on a CFS forum gave a rather brief overview as to a pretty big elephant in the room regarding one of the potential influencing factors in these studies and just how ridiculous the whole thing is-
(note- {..} indicate my own comments to expand/clarify one of the points made)
[Aside: A lot of people have made suggestions to me speculating why the CDC broadened the criteria in the way they have done. I do not know the answer. The most plausible theory to me is the following: The CDC followed patients in the community in 1997, 1998, 1999 and 2000. Between December 2002 and July 2003, they were brought in for intensive testing. In total, 227 people were invited in, including 70 who had previously been diagnosed with CFS. These people went through very expensive testing – the whole exercise cost $2m. However, unfortunately, only 6 out of the 70 cases of CFS satisfied the Fukuda definition when they were brought in. Also 4 more of the other individuals also satisfied the definition. If one only excludes people who currently have Melancholic Major Depressive Disorder (MDDm) (which was not the recommendation of the International CFS Study group){the ICFSSG recommended people be excluded if they suffered from MDDm in the previous 5 years, not just current MDDm}, one can get the numbers who satisfy the Fukuda definition up to 16. The CDC admit this in their paper (Reeves, 2005). However 10 (or 16 if one allows all the MDDm cases) people with CFS would not be enough for the CDC to publish CFS studies with a lot of the data they have. For some of the experiments, people would not have been suitable for one reason or another e.g. they were on medication. Also, often data is not complete or tests become corrupted so a percentage is lost. For some of the experiments, gender might make a difference and one may end up excluding the men as there might not be enough patients. So 10 or 16 CFS patients is not enough to publish CFS papers using this data. But $2m of the CFS fund had been spent on this experiment and it might look like a waste of taxpayers’ money if papers were not published. The CDC had already gotten into trouble for misusing the CFS budget in the past. So the definition of CFS was expanded so that CFS papers could be published.
So that’s one plausible theory although one does not need to accept that to believe that the empirical definition is flawed].
Re: CFIDS (CDC/CFS) Moved to Virology and away from REEVES
(Score: 1, Interesting)
by Anonymous on Oct 30, 2009 - 09:22 AM
There is now borderline hysteria about the nation's blood supply and the XMRV virus being in it for the past 3 decades. What does this mean? It means that this cancer causing virus has been in our blood supply and may have caused thousands or more likely millions of cases of cancer from blood transfusions, much like AIDS/HIV.
This is a scandal of epic proportions and the CDC is the bull's eye target for this situation.
God help us all. Cancer causing virus in the nation's blood supply for over three decades?
This is well past CFIDS and into the whole population.
-----------------------------------------------------------------------------------
COMMENTS ON THIS STORY HAVE BEEN TURNED OFF AS THEY HAD VEERED TOO MUCH TOWARDS PERSONAL ATTACKS The HHS Scientific Advisory Committee for Chronic Fatigue Syndrome and the International Association for CFS/ME have formally recommended a change of leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education. They recommend "that the CDC needs to identify a CFS program leader who is a progressive, open-minded, and dynamic manager with a sense of urgency commensurate with the pressing needs of the CFS community." Based on estimates of increasing prevalence and the poor track record after 25 years of effort, the IACFS/ME is highly critical of the proposed 5 year strategic plan and urges that the CFS program be relocated to the National Center for Chronic Disease Prevention and Health Promotion which "contains the necessary expertise and leadership critical to establishing interventions to detect, control and prevent CFS."
Also at issue is the possible misuse of funds. Formally testifying before the CFSAC, Kim McCleary, President and CEO of the CFIDS Association of America, detailed concerns about the management of CDC funds allocated for CFS research.
Minutes of the DHHS Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, October 2008
Testimony of Kim Mcleary October 2008
CFSAC recommendations, May 2009
IACFS/ME's recommendations on CDC's 5 Year Strategic Plan for CFS Research, July 2009
Brief comment on the above closing statement from this CDC Chatter Blog thread
It should be mentioned that Nancy Klimas & Lenny Jason are currently members of the HHS CFSAC.
http://www.hhs.gov/advcomcfs/notices/n040107.html
During May 2009 both called for "progressive leadership at the CDC."
http://www.hhs.gov/advcomcfs/recommendations/05272009.html
U.S. Department of Health & Human Services
Committee Recommendations
May 27-28, 2009
CFSAC voted upon and agreed for the following recommendations to be forwarded to the
Assistant Secretary for Health and the Secretary:
Recommendation # 1
Establish progressive leadership at the CDC that can achieve efficient meaningful progress in
CFS research, clinical care and education.
Recommendation # 2
Provide adequate funding to CDC to effectively carry out a detailed 5-year plan. This should
include, but not be limited to, immediate progress in these priority areas:
Identification of
1.
biomarkers and etiology of CFS;
Creation of guidelines for adult and pediatric CFS management in full partnership with
organizations representing CFS scientific and clinical expertise;
2.
Provision of web-based guidelines for CFS management given our current state of
knowledge and expert opinion, again in full partnership with organizations representing
CFS clinical and scientific expertise; and
3.
Provision of comprehensive information about CFS in partnership with CFS experts to the
scientific community, medical and mental health providers, educational institutions and
the public for both adult and pediatric CFS through DHHS resources.
4.
Recommendation # 3
Establish Regional Centers funded by DHHS for clinical care, research, and education on CFS.
These centers will provide care to this critically underserved population, educate providers,
outreach to the community, and provide effective basic science, translational, and clinical
research on CFS.