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Watch CFSAC meeting online Monday 9-4 EST May 10

Discussion in 'General ME/CFS News' started by citybug, May 7, 2010.

  1. JT1024

    JT1024 Senior Member

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    New CFSAC Committee Members

    This may be duplicate information but I just came across it. A patient of Dr. Susan Levine's posted it. She also submitted a written testimony to the committee since she could not travel to DC. She came down with ME/CFS in 2002. She has two sons with it also.

    New CFSAC Committee Members:

    Dane B. Cook, PhD
    Madison, WI
    Term: 05/10/10 to 05/10/14 (new)

    Eileen Holderman
    Galveston, TX
    Term: 05/10/10 to 05/10/14 (new)

    Michael Houghton, PhD
    Danville, CA
    Term: 05/10/10 to 05/10/14 (new)

    Susan M. Levine, MD
    New York, NY
    Term: 05/10/10 to 05/10/14 (new)

    Gailen Marshall Jr., MD, PhD
    Jackson, MS
    Term: 05/10/10 to 05/10/14 (new)

    Link to patient's (Sue Jackson's) website is here: http://livewithcfs.blogspot.com/2010/04/new-cfsac-members-announced.html
  2. Dolphin

    Dolphin Senior Member

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    Good point.

    Also the metabolic syndrome research was done on the empiric criteria - doesn't give us proper data on CFS really.
  3. Dolphin

    Dolphin Senior Member

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    justinreilly
    If you don't have a landline, and your cell phone was beside you, what phone number were they ringing?
  4. JT1024

    JT1024 Senior Member

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    Dr. Klimas at CFSAC today

    Wish we could post to one common document all the observations we made while watching the meeting today. I don't have much of a brain left but would love to document what key contributors stated. Thanks to sarahg for capturing some already!

    This is what I remember of Dr. Nancy Klimas's statements:

    • Patients need access to effective treatments
    • Many patients (?85%) are still undiagnosed
    • The development of evidence based practice guidelines which would help to educate physicians on the most effective means to diagnose and treat CFS patients. A demonstration project was mentioned.
    • CFS has to be removed from any psychiatric diagnosis in the ICD-10. (The psychiatric diagnosis in the US means that CFS patients cannot get the treatments they need) Nancy Klimas and Lenny Jason were also in agreement about the multi-system nature of CFS.

    At the beginning of the meeting, Nancy was very articulate in stating the necessity of making effective treatment available to patients directly to Howard Koh, MD, the Assistant Secretary of Health and Human Services.

    Dr. Koh is a very powerful, extremely intelligent man. See below:

    Dr. Howard K. Koh serves as the 14th Assistant Secretary for Health for the U.S. Department of Health and Human Services (HHS), after being nominated by President Barack Obama and confirmed by the U.S. Senate in 2009. As the Assistant Secretary for Health, Dr. Koh oversees the HHS Office of Public Health and Science, the Commissioned Corps of the U.S. Public Health Service, and the Office of the Surgeon General. He also serves as senior public health advisor to the Secretary. At the Office of Public Health and Science, he leads an array of interdisciplinary programs relating to disease prevention, health promotion, the reduction of health disparities, womens and minority health, HIV/AIDS, vaccine programs, physical fitness and sports, bioethics, population affairs, blood supply, research integrity and human research protections. In these various roles, he is dedicated to the mission of creating better public health systems for prevention and care so that all people can reach their highest attainable standard of health.

    More info on him here: http://www.hhs.gov/ophs/leadership/ash.html
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Maybe you have better cell service in Ireland, but occasionally my phone doesn't ring and it goes to vm.
  6. Kati

    Kati Patient in training

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    I just watched some of the videos since I missed most of the morning presentation.

    I am extremely disappointed with Dr Unger's answers in regards to the directions the CDC was taking. First they are continuing to focus on very vague studies (Wichita follow-up) and mentioning that the number of patients having CFS and "other fatiguing illness" at around 4 millions. This is concerning especially that the budget comes to 1 $ per patient, or maybe 1.25$. For CFS to now belong to the "High consequence pathogens and pathology" Division,which deals with really bad bugs like marburg, ebola, small pox, rabies, anthrax "all the high consequence diseases..."Yet the CDC worry about metabolic syndrome and its consequences instead of focusing on the cause and pathogens... What's wrong with the picture?

    She was very vague in her answers and fumbling, her hands were trembling, and I felt she didn't want to be there. This is really scary times and certainly she is not reassuring me at all. Anybody else feel that?
  7. Jerry S

    Jerry S Senior Member

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    I found Dr. Unger very troubling, too, Kati.
  8. bullybeef

    bullybeef Senior Member

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    And ME/CFS may also be changed if you are XMRV+. But what will remain for the people whom are XMRV-?
  9. flybro

    flybro Senior Member

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    pluto
  10. flybro

    flybro Senior Member

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    kati,

    I couldnt neleive she had a slide about the new buildings.
  11. shiso

    shiso Senior Member

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    This meeting lacked the drama of the October meeting, but I thought it was interesting in a different way, in that it was revealing how poorly CFSAC itself is set up for effectiveness. Given that it's supposed to be THE experts giving THE best possible advice to the government about what the government should be doing right now about ME/CFS, it seemed obvious that they need to organize themselves better - MUCH better.

    Random impressions and observations:
    • Dr. Koh: It was nice that someone with real proximity to the Secretary of Health showed up. He seemed ambitious and obviously wants to do a good job in his new post. I thought it was encouraging that he seemed like he would be genuinely receptive to smart recommendations from the Committee. (CFSAC must take advantage of this!)

      His responses to questions did reflect he knew close to nothing about the disease (with the exception of recent government efforts aimed at XMRV) though, and he didn't make any grand promises. He struck me as a practical guy - he would do his best to act on specific, smart, well-organized and clear recommendations from a competent Advisory Committee.
    • Dr. Unger: agree with sarahg's notes and observations. Unger did not want to be there. The only refreshing thing was that she did not really try to cover up the fact that little of value is in the works at the CDC right now with respect to ME/CFS. It was almost like she was saying, "look, this program sucks right now and I'm only temporary" just not in so many words. The reality is disappointing obviously, but at least she wasn't pretending to have a grand plan, like when Reeves presented his five year strategic plan.
    • The blood guy (Holmberg?): He didn't have an answer to the question, which he was asked more than once and from different angles, "what's the harm in erring on the safe side by banning ME/CFS blood donations while the XMRV research is ongoing, instead of waiting for conclusive results?" The clear subtext (that Dr. Hannah from NIH obviously shared) was that they don't want to scare the public if they can avoid it.

    Unfortunately, unless I missed something in the afternoon hour that I didn't see, my impression from the meeting was that everyone including Wanda Jones was totally under-prepared for the meeting, even for an in-depth look at how CFSAC itself is organized for effectiveness, and that the members were all over the place as to how to get all their messy recommendations organized, prioritized, etc.

    Despite having some very smart, outspoken members who "get" the disease and its problems doing a decent job GIVEN the poor framework they're operating in, the Committee doesn't seem like it currently has the organizational framework or the financial resources to produce that neat, organized "action items list" that Dr. Koh and company can readily work with. We have no idea whether he or Dr. Jones can ultimately make any difference, but it's not gonna happen if the recommendations aren't readily usable/implementable/actionable.

    On an unrelated note, I really liked what Lenny Jason said at one point (in the context of the nature of the recommendations the Committee should be making), that just because they need to be realistic doesn't mean they shouldn't think big (or something to that effect). I thought that was a really important point. It's a reality that the budget for CFSAC itself is tiny and reflects the ridiculously small amount of funding the disease gets at CDC and NIH (is it Congress that ultimately decides the amounts allotted, and the agencies are stuck with it? I thought Congress decided the amounts under advisement from the agencies?), and people always seem to try to fit their ideas into that framework, but there's no reason why CFSAC shouldn't itself push for more federal funding to fit its recommendations, rather than making its recommendations to fit the funding.

    I really hope they get themselves in better shape for the fall...
  12. Dolphin

    Dolphin Senior Member

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    I think this should ring more alarm bells with people.

    Evidence-based guidelines will pretty much have to recommend GET and CBT. And possibly/probably nothing much else will qualify as evidence-based as there hasn't been sufficient RCTs.

    Dr. Klimas may like to recommend exercise and CBT in guidelines but as has been shown in discussions on this forum, many patients don't want them in guidelines.
  13. mezombie

    mezombie Senior Member

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    I agree with your assessment of Dr. Klimas' remarks, Tomk.

    She was interested in having the IACFS/ME put together treatment guidelines when she was President of the organization (1-2 years ago?).

    I really thought (naively, it appears) that she would push for a version of the Canadian Guidelines.

    (sigh)
  14. JT1024

    JT1024 Senior Member

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    TomK and Mezombie,

    I disagree on Nancy Klimas.....

    The CFSAC meeting yesterday essentially agreed that the Canadian guidelines were the best.... at least that was what I heard.

    You might want to do more research on Nancy Klimas. She totally understands the CFS/ME is not psychiatric and would not have patients doing GET/CBT unless indicated.

    The information below is dated but it gives you and idea of the depth of her knowledge. I haven't found a date yet but it is obviously prior to XMRV and I suspect it is from the late 90's or early 2000;s.

    CFIDS/FMS SCIENTIFIC OVERVIEW: NANCY KLIMAS, M.D. LECTURE

    Nancy G. Klimas, M.D. is a director of the Department of Immunology of the University of Miami School of Medicine, a member of the CFS Working Group there as well as a board member of the American Association of Chronic Fatigue Syndrome and the co-editor the Journal of Chronic Fatigue Syndrome put out by The Haworth Medical Press. She is also an AIDS researcher and clinician. The following is a summary of a lecture she gave this past spring to an attentive audience of PWCs. CFIDS will be referred to as CFS in this article.

    Dr. Klimas began by explaining the revised case definition (1994, Fukada, Straus, et al) where 4 of the 8 symptom criteria were taken from studies by Anthony Komaroff, M.D.:

    memory or concentration impairment (PWCs thoughts are easily disrupted)
    sore throat
    tender lymphadenopathy (tender lymph glands)
    myalgia (pain in the muscle)
    arthralgia (pain in joints)
    new type of headaches
    unrefreshing sleep
    post-exertional malaise for more than 24 hours

    The last symptom is the answer to disability. Dr. Benjamin Natelson proved the derogatory effects of exercise to PWCs in a study. He administered an IQ test to both PWCs and a sedentary control group. Then the group used a treadmill and took the IQ test again. The control group's IQ improved but the PWC's IQ dropped 20 to 30 points! Twenty-four hours later, the IQ tests were repeated and the PWCs drop persisted. "That's real! That's impressive! That's quantifiable!" said Dr. Klimas. She uses this to fight for her patient's disability.

    Fibromyalgia Syndrome (FMS) is "often lumped together with CFIDS, but that's not entirely appropriate," she said. It's an overlapping illness, but more than half of the PWCs meet FMS criteria.

    FMS CASE DEFINITION (1990 American College of Rheumatology):

    widespread pain for more than 3 months
    pain left and right sided
    pain above and below waist
    And 11 or more of 18 specified tender points along with general pain. Those FMS patients who have something in addition to CFIDS are told they have "idiopathic FMS" but "idiopathic FMS is CFIDS!"

    FMS has been "a known entity for 25 years and clinicians are more comfortable with it...so it has been a wee bit more respected...but not much," said Dr. Klimas. "In fact, it is easy to find high tech scientific studies in CFS, but hard to find them in FMS." FMS strikes 1% of the population, takes up 15% of a rheumatologist's case load, and greater than 80% are female. CFIDS is found in at least 3 per 1,000 (Buchwald, et al) or 37 per 100,000 (Lloyd, et al in an Australian study).

    The pathogenesis that Dr. Klimas believes is responsible for CFS begins with a genetic predisposition. The person then experiences a triggering event which, in turn, leads to immune activation, cellular dysfunction, and viral reactivation. The proof of genetic involvement is the HLA typing done in CFS and FMS:

    CFS: HLA DR4, DR3, DQ3 (Keller, et al, 1993)
    FMS: None found in study of 60 patients (Honen, et, al, 1992)
    Chronic Lyme: HLA DR4 (antibiotic resistant arthritis), HLA PR2 (Steere, et al, 1990)

    Although the pathogenesis of CFS begins with a genetic predisposition, this does not mean that everyone with a predisposition will get CFS. A trigger begins the body's plunge into the world of CFS. Without this gene plus a virulent trigger, Dr. Klimas believes that a person would not get CFS. This is not unheard of. Reiter's syndrome is an example of an illness that takes a genetic predisposition.
    Do viral infections trigger FMS or CFS?

    11-20% of HIV patients have FMS
    acute coxsackie virus includes chronic FMS
    acute parvovirus includes FMS 18% of 293 FMS patients describe an infectious onset (Goldenberg, 1993) which is a tiny number in comparison to CFS
    B. burgdorferi is known as a triggering agent (77 to 800 "chronic Lyme patients actually had FMS" (Hsu, et al) while 43 of 77 prior Lyme documented patients had CFS.

    Under the current definition of CFS, Lyme was the trigger and chronic Lyme is considered CFS. Thus, Lyme is another overlapping illness. Viral infections in CFS are fairly common with 60-80% describing an acute onset. Some begin with acute EBV (Epstein-Barr Virus) while others begin with acute B. burgorferi or acute CMV (cytomegalo virus). All are followed by CFS. The EBV titers in CFS are not that much higher than an average person, but knowledge of HHV-6 is incomplete although it seems interesting. In AIDS, HHV-6 helps HIV to replicate and could be a co-factor in CFS as well. HHV-6 also reacts on the NK (natural killer) cell. "Both of them have the same brain power, but sure as heck not the same fuel," said Dr. Klimas, alluding to the funding of AIDS research vs. CFS research.

    Dr. Klimas finds both similarities and differences in Gulf War Illness (AKA Gulf War Syndrome). Complaints of fatigue are found in 60% (vs 100% PWCs) with diarrhea the next most common complaint. Rashes are also common at time of onset. She wanted to study GWI, but her grant request was not funded. Dr. Klimas found it most interesting that, although there were a high number of females in the Gulf War, the majority of those with GWI are male.

    After a quick tour of the immune system, Dr. Klimas illustrated how T-cells get the message if a "bug" enters the body. In AIDS, over 90% of the T-cells are killed off which makes the person get sick and die. A PWC has 100% of their T-cells activated, but a healthy persons immune system is only 60-80% activated. If a healthy person, for an example, cuts their finger, they'll feel pain in that finger. A PWC, on the other hand, has so many of their T-cells activated that the same finger cut will be felt in the brain and the whole body! This is a result of the overactivation found in CFS.

    The PWC has their NK cells barely functioning. This is why, in Japan, CFS is called Low NK Cell Disease . If it were known by this name in the United States, she said, "We'd be a lot better off." She, personally, prefers the name that researcher Dr. Jay Levy coined for CFS, "Chronic Immune Activation Syndrome (because) it has a kind of ring to it."

    Turning to the chronology of CFS, Dr. Klimas said that beta 2 (microglobulin found in the serum) is higher in PWCs. Their immune activation is constantly up-regulated. Although it will be higher during a flare or relapse, it is always high. The TNF (tumor necrosis factor) is also much higher in PWCs which correlates very strongly with NK dysfunction. This is a very accurate way to test for CFS. "I could find 90% of my CFS patients using this method of testing," she said. It's pretty impressive data."

    The immune activation is why PWCs "feel so terrible." If a PWC could shut off their immune system, they'd feel much better. Steroids accomplish this, but "when a PWC goes off the steroid, the immune system responds with a vengeance," she said. The proof of immune dysfunction in CFS includes these important milestones in research:

    Chronic Immune activation (Klimas, etal, 1989, Landay and Levy, 1990, Straus etal, 1993)
    Lymphocyte dysfunction (Califori, etal, 1993, Straus, etal 1993, Linide, etal, 1992)
    Cytokine dysregulation (Patarca, etal, 1993, Stause, etal 1993, Linde, etal, 1992)
    Humoral dysfunction (Komaroff, etal 1988, Read etal. 1995)

    In contrast, FMS needs much more work in the area of immune dysfunction. The studies for FMS citing immune dysfunction include:

    IL-2 dysregulation (Harder, etal 1991)
    reduced NK cell activity (Russel, etal 1988)
    abnormal lymphocyte (Russel, etal 1988)

    The cognitive dysfunction found in CFS takes specific testing that can be found by a cognitive psychologist using psychometric testing. The dysfunctions are found in concentration, attention, distractibility, and logical memory. The cognitive problems are different in FMS, Lyme (delayed recall), MS, and depression. This has been documented by Kaplin (1992), Krupp (1994), Riccio (1992), and Millon (1989). Is there a mind-body connection in CFS, as the government keeps suggesting in every one of their CFS publications? Dr. Klimas reminded those in the audience that she is an immunologist that looks at scientifically proven facts. As far as psychosocial interplay that psychiatrists have persisted in studying in great depth in CFS, Dr. Klimas stated, "I don't feel the mind has any idea what the body is doing." There is certainly interplay between the neurotransmitters (incorrect messages sent) and the (resulting) neuroendocrine dysfunction, but it has nothing to do with any psychological problem.

    The autonomic dysfunction found in CFS is suggestive of a parasympathetic predominance. "Basically, " Dr. Klimas explained, "this means that when a person stands up after being prone for awhile, the heart says, 'I need more blood", and the heart is giving enough blood. But then the parasympathetic system says "O.K., now drop the pressure. (A cardiologist will go beserk if testing this...and finds this important...calls it neurocardiogenic sycope.") This is good to use for objective evidence if someone is going for disability, but Dr. Klimas sees no other reason to test for this abnormality. When treated for this, many PWCs feel better because Florinef keeps the heart full. "Water retention is really the theory," she said and some medications, such as Paxil and Prozac also help with this.

    "The immune system and the autonomic system are completely tied up to work together," Dr. Klimas continued. When a PWC is tilt-table tested, the pulse falls which is known as bradycardia. This is a phenomena not found in anxiety disorders. Sympathetic withdrawal and parasympathetic stimulation was found in 1995 (Bou-Halaigah, et al from Johns Hopkins) and reduced vago activity was also found the same year (Sisto, 1995), but was documented by Kollai in 1992 and in reconditioned athletes in 1993 (de Gues, et al). Dr Klimas said she studied and published data on PWCs who were hit by Hurricane Andrew. Their parasympathetic stimulation made it possible for them to respond to the emergency and feel fine while they did it but they relapsed dramatically after the event.

    Addressing sleep studies in FMS/CFS, Dr. Klimas said that there was alpha intrusion during delta sleep. This was reported in both FMS and CFS (Modolfsky), while alpha wave findings in FMS was found by Ware, Gupta, Herrison and Doherty. Subsequently, 15 CFS patients and 4 with FMS were found to have a problem of alpha wave intrusion that did not predict either illness nor that of depression (Menu et al, 1994). [Editor's note: this intrusion means you are not fully asleep when you are supposed to be.] These studies raised concern about seratonin dysfunction and Modolfsky postulates a potential IL-1 (interleukin-1) effect. This is why low-dose anti-depressents can be helpful, such as Doxepin. However, when to take it depends on whether you're a slow or fast metabolizer. Dr. Klimas thinks some are trapped in alpha-wave sleep due to pain. She highly recommended Dr. Pelligrino's book to try and decrease pain (The Fibromyalgia Syndrome by Mark J. Pelligrino. M.D., Anadem Publishing, Inc., 1995 is available by mail. Call 800- 633-0050)

    Dr. Klimas tries to get her patients off as many medications as possible. Detoxifying PWCs doesn't make the illness go away, she said, but it "can put some beauty in life."
  15. sarahg

    sarahg Admin Assistant

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    The sad thing is in Klima's mind evidence based guidelines would be treatment using antivirals, sleep meds, immune modulators...things like that. But unless CFSAC themselves or maybe IACFSME is developing these guidelines, we all know that's not what's going to be in them.

    Another thing I thought was interesting with the demonstration project idea was that the 2 ex officios whose agencies would be involved in that (AHRQ and HRSA)-it seemed they were saying in not so many words that what they hear about this illness from CFSAC and other researchers is in direct conflict with what CDC is saying this disease is and how to treat it. One directly said that until the definition was sorted, what would they tell people? So they were hesitant to embark on a project as they would have to use the CDC definition and treatments, which wouldn't demonstrate anything and would probably be a huge waste of money. I know they couldn't come right out and say that (I wish they would have) But until CDC removes everyone in the CFS program and rebuilds it from the bottom up, none of that is going to change. We shouldn't have to have an external committee to be drawing up guidelines and treatments in a usable, accurate manner. That is the job of the CDC CFS program and they are not doing their jobs, they are trying to cover their asses. If the CDC people are unwilling to stop swimming against the tide, they all need to be fired or transferred to other departments. Until all the research that came from the empirical definition is discredited, other government agencies don't have accurate info to use to educate and set up programs or demonstration projects like this. At least it seemed as though these agencies recognized this was a problem and didn't want to just push right ahead using the CDC materials. But what happens now, more waiting and nothing getting done about it?
  16. JT1024

    JT1024 Senior Member

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    Treatment guidelines are developed or in development for every disease so that there is a standard of care that can be communicated to all physicians.

    Ideally, practice guidelines are evidence based so the treatments physicians prescribe that get the best outcomes (highest functionality or a complete cure) are documented and shared.

    If one doctor has a cure or best practice for something, I know I want the doctor taking care of me to know what the best treatments are! I don't want him/her to reinvent the wheel.

    It is true the insurance companies and governments can get involved with practice guidelines and guidelines can vary. However, the development of guidelines is critical regardless of the illness.

    You might want to check out this website: http://www.guideline.gov/
  17. OneWaySurvival

    OneWaySurvival

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    Highlights from Yesterday

    Hi all. It's great to finally be part of this awesome forum.


    I attempted to follow the entire CFSAC yesterday, and almost made it. :D
    The 1st part of the day was fairly exciting. 2nd part of the day was tedious!

    Apparently this was a "process meeting" but they managed to get a little work done for our illness too. I didn't make it through much of the discussion about changes to the charter and bylaws (I felt miserably sick from trying to follow this meeting throughout the day - thankfully you can hit pause on realplayer), nor did I hear the final list of CFSAC recommendations to the Secretary (which will be posted to the HHS.gov site later), but I did hear a few recs made throughout the day that I liked.

    The highlights from yesterday for me were:

    * The new Assistant Secretary of Health, Dr. Koh, sat at the table during the first hour of the meeting, the first time somebody at that level has ever attended a CFSAC. He was very affirming of the work CFSAC is doing and pledged to improve communication back to the CFSAC from his office. He said he was bothered by the fact that past recommendations to the Secretary sat there unresponded to, and he promised to change that under his leadership.

    * Christine Williams from AHRQ (a government health research agency) attended as a special guest and is being invited to become a permanent ex-officio member of the panel, to join the FDA, CDC, NIH, HRSA, and SSA. The cool thing about this is Christine is also a CFS patient!

    * Dr. Unger seemed very nervous and unsure of herself and kept reminding people that she is only an interim leader for the CDC. She did at least acknowledge that as they go through this transition, they are talking about how to re-allocate money to better purposes to match the current science, compared to what was done in the past under Reeves. Unfortunately money and time is tight right now as they are occupied with moving into a brand new, bigger building. :rolleyes:

    * Dr. Holmberg, the blood supply director, was the most interesting part of the day. Key points:


    -They are expecting results from XMRV studies from 6 agencies/labs in the U.S. by June. :victory: 4 of the 6 are already in, and he implied they are finding XMRV, but with some "confounding results" as to the possible link to CFS and prostate cancer.



    -What they are learning is concerning enough that they are actively discussing an official blood donation ban for CFS patients, but have not instituted it yet and may hold off until after the data is in from all 6 agencies before making a final decision. He talked about the bans recently announced in Canada, Australia, and New Zealand and pointed out that these countries still don't ask a question to the person donating blood if they have CFS, they wait for them to volunteer that info. When pressed about why the U.S. hasn't followed suit, he couldn't really offer a reason why it would be harmful to implement a ban in the U.S. except to say that they believe their current guidelines are safe enough where community blood centers ask a question about whether the person "feels healthy today." I got the feeling this was a CYA.



    -The CFSAC responded by passing a strongly worded recommendation to implement a blood ban for CFS patients immediately, and adding a question to the donation screening forms at the Red Cross, AABB, etc. about whether the person has ever been diagnosed with CFS. The grumpy lady from the NIH (Elanor Hanna) said this would only scare people prematurely, but the CFSAC totally ignored her pathetic complaints. The CFSAC rightly believes that implementing this ban will help bring awareness to the urgent nature of CFS and can help propel the current momentum of the science and everything else.

    * A great recommendation was made by Wanda Jones, the govt. appointed facilitator that helps run the CFSAC and other health committee meetings. She encouraged the CFSAC to take advantage of the recently passed health reform, which occupies a huge % of the Secretary's office's time and attention. So, CFSAC passed a recommendation about making health reform include new education opportunities for all levels of doctor & nurse training for CFS care. Wanda Jones felt that once CFS education becomes part of the health reform behemoth, it will generate more funding for research and other objectives. I think I got this right anyway. The point is, health reform is occupying everyone's attention, so if you want movement on your issues, it needs to be included in the reform package that is still taking shape.

    * Patient testimonies were short but good. Always put a lump in my throat. It was great to see Annette Whittemore there again. CFSAC proposed a new bylaw to allow 5 minutes per speaker in the future instead of 3.

    * CFSAC passed an urgent recommendation to prevent the proposed ICD-10 change that would classify CFS as a psychiatric diagnosis. Instead they want it classified as a multi-system illness.
  18. jspotila

    jspotila Senior Member

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    Enact CFSAC recommendations

    Virtual Lobby Day is underway, and one of the actions you can take is to send an email to Secretary Sibelius, Assistant Secretary Koh, and other officials within DHHS urging them to immediately enact the CFSAC's recommendations including the recommendation to defer anyone with a history of CFS from giving blood.:

    http://capwiz.com/cfids/home/

    One email sent through this system will go to 8 people, and while most of the text is provided you can personalize it with your story or comments.
  19. mezombie

    mezombie Senior Member

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    Jt1024

    I share your admiration of Dr. Klimas. I am also aware of the US government's guidelines website.

    My concern is that politics have driven and continue to drive what treatments are suggested. Nancy Klimas, even if she spearheads a new treatment guideline, will be subject to pressure to include some sort of GET and CBT. Even if the IACFS/ME produces guidelines, keep in mind that there are members of this group that still think ME/CFS is a psych disorder.

    OT: I am leaving town and will be offline for the next two weeks, unless I manage to sneak into a library.
  20. Otis

    Otis SeƱor Mumbler

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    USA
    excellent summary. The icd 10 issue is very critical. Doctor Klimas pointed out that most insurance for psychiatric conditions is severly limited, not to mention the issue of additional marginalization.

    Otis

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