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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. Cort

    Cort Phoenix Rising Founder

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    I agree that its astonishing that the program is in a branch of the CDC that doesn't want to apply its know-how to it. What a misconnect!
     
  2. gracenote

    gracenote All shall be well . . .

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  3. citybug

    citybug Senior Member

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    Thank you parvo for transcribing some of Dr. Holmberg. I hope you can do all that section. I can barely take notes. I thought his was the best testimony and has the most information. Yeah, the gov't doesn't want to declare the danger to the blood supply until they absolutely have to (and it is great CFSAC recommended to ban it), but he was the only rep telling us what they are doing. The Blood group appears to be working hard and studying all the literature available. I thought he was saying they were really reading up on everything about XMRV. Does anyone know what a NAT neucleic acid test is related to serology? We still don't know if the Emory group that published a study is participating in the sample exchange, but he gave the contact, Simone Glen and mentioned NCI antibodies test. I think he deserves big thanks, and maybe would give more info. I think he knows how bad the retrovirus is.
    I still have no clue what else the CDC is doing re XMRV, or who would report on it. Could they have asked Dr. Unger? What about Miller on the panel? Are they doing any studies besides working on a test? Holmberg said one CDC lab and 2 FDA labs?
    So in my mind the rest of the CDC and NIH are doing nothing as objected to by Dr. H. I'm even more angry about Dr. Hannah watching it again. It's like they are humoring WPI, when WPI is the only place in the world that is working on XMRV in connection with CFS and Lyme, MS, GWS, FM Autism some up to 35%-that is huge in itself. ...err can't think and fume at same time. The missing patient testimony and lack of XMRV questions means they aren't even talking about the next step of patient treatment --for them that is after testing 1000 healthy people and epidemelogy studies. I want to tell them that patients want AZT and other known anti-xmrv drugs now, where are the trials? Tests may not be definitive for a while, WPI is the only place doing multiple tests on humans.
    Dr. Hanna is a psychologist and Associate Director at Office of Research on Women's Health. But she is also chair of Trans NIH Working Group on CFS which meets monthly. Are they the ones that set up review of CFS grants or has it all been moved to CDC? I think we need to reach these people too. Short on retrovirologists. We never know who may champion us. There addresses and emails are on the link.
    http://orwh.od.nih.gov/cfs.html
    http://orwh.od.nih.gov/cfs/cfsWGroster.html
    Maybe Dr. Unger could redirect some CDC energy, funds if they start one xmrv study in cfs.
    I don't the CFSAC should be afraid to ask for the Centers for Excellence. Sebellius has money for new clinics for underserved populations.
    Dr. Koh was very personable and smart, but had no clue about anything going on with ME/CFS. I hope he wants to learn.​
     
  4. oerganix

    oerganix Senior Member

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    According to the NIH website, CFS is slated to get $5 million for research in 2011...the same as this year. And the same amount the Whittemore's put up to start WPI. Pathetic.

    If there are 4 million CFS sufferers, as per CDC, that's $1.25 per patient. The 1300 Americans who got malaria last year will have more than $89,000 per patient directed at their disease next year, and the cause and treatment are already known.
     
  5. Dolphin

    Dolphin Senior Member

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    I think quoting other illnesses can be risky.

    I don't know much about malaria but
    "According to the World Health Organization there are 300 to 500 million clinical cases of malaria each year resulting in 1.5 to 2.7 million deaths." (source: http://archive.idrc.ca/books/reports/1996/01-07e.html ).
    This little piece mentions the problem of drug resistance and also that the amount of the world affected is growing.

    Malaria can also land people in hospital which can be expensive to health systems.

    I remember at one of the previous CFSAC meetings (I think it was or maybe the CDC feedback meeting) somebody complained another condition, which didn't have the best of name, got a similar amount of funding even though it was a lot rarer. However, when I looked, the condition was something like Alzheimer's in children so criticising such funding might backfire if somebody had direct or indirect knowledge of the condition and thought it also deserved funding.
     
  6. citybug

    citybug Senior Member

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    That shows what can happen when you have someone higher up in the food chain backing you, and this is a priority of Obama's. I think we should write to this guy too, not putting down other program, but telling how much of an emergency XMRV and CFS are. (I keep looking at the CDC and NIH charts trying to figure out where we are.)

    Rear Admiral Ali S. Khan is currently an Assistant Surgeon General and the Acting Director of the National Center for Zoonotic, Vector-borne, and Enteric Diseases, Centers for Disease Control and Prevention [CDC], Department of Health and Human Services.

    Acting Director of the National Center for Zoonotic, Vector-Borne, and Enteric Diseases (ZVED)

    Rear Admiral Ali S. Khan is currently an Assistant Surgeon General and the Acting Director of the National Center for Zoonotic, Vector-borne, and Enteric Diseases, Centers for Disease Control and Prevention [CDC], Department of Health and Human Services. He joined CDC and the US Public Health Service Commissioned Corps in 1991 as an Epidemic Intelligence Service officer and over the past decade has responded to and led numerous high profile domestic and international public health emergencies including hantavirus pulmonary syndrome, Ebola hemorrhagic fever, monkeypox, avian influenza, Rift Valley fever, severe acute respiratory syndrome [SARS], the Asian Tsunami, and the initial public health response to Hurricane Katrina in New Orleans.

    In 1999, he served as one of the main architects of CDC's public health bioterrorism preparedness program which upgraded local, state, and national public health systems to detect and rapidly respond to bioterrorism. As Deputy Director of this new program he created the Critical Agent list, which has remained the basis for all biological terrorism preparedness; published the first national public health preparedness plan; initiated syndrome-based surveillance; and designed the key focus areas to improve local and state capacities. These preparedness efforts were crucial in limiting the scope of the first anthrax attack during which he directed the CDC operational response in Washington, D.C.

    Dr. Khan’s professional career has focused on bioterrorism, global health, and emerging infectious diseases. While serving as the interim Director for CDC’s global infectious disease activities he designed CDC’s joint field epidemiology and laboratory training program. He helped design and implement the new $1.2 billion 5-year President’s Malaria Initiative and has been engaged in guinea worm eradication activities. More recently, he spear-headed a pilot project that focused on improving knowledge exchange, integration, and delivery for all public health practitioners.
     
  7. oerganix

    oerganix Senior Member

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    I am very much aware of how much malaria is a problem in the rest of the world outside the US. The cases and deaths you mention occur mostly in Africa, Asia and tropical Latin America. Ninety percent of world deaths from malaria are in sub-Saharan Africa, most of them children.

    I live in a country where people die of it regularly. In the last few minutes a government truck went up and down my street spraying for the mosquitos that transmit it. I know people who have had it and survived and know of some who have died from it. It is a disease of poverty and very much preventable. The cause has been known for over 100 years. Research now is mainly in search of a vaccine. Interestingly enough, artemisinin is one of the drugs used to treat it. If I get it here, it will probably kill me.

    By the NIHs own reckoning, there were only 1300 cases in the US last year, all from travelers returning from other countries. When it comes to funding research I feel very strongly that 1-4,000,000 Americans and an estimated 17,000,000 others in the world who have ME/CFS deserve PARITY IN RESEARCH FUNDING. At $1.25/patient for CFS vs over $89,000/patient for malaria, think the NIHs priorities are screwed up and I will continue to say this as loudly as possible until there is more PARITY IN RESEARCH FUNDING. The US also sends millions in foreign aid to those countries with malaria for prevention, treatment and research. In fact, I have taught English to some of those researchers here in Nicaragua, so that they could better participate in international conferences on the subject. Some of that funding is spent to fly them around the world.

    I am saying not to fund malaria research. I am saying it is out of balance with what CFS sufferers deserve and need. We American PWCs are being treated worse than people in third world countries, when it comes to researching our illness, and maybe even the treatment of our symptoms.

    Regarding the "alzheimers in children" disease, that may be Pick's Disease, which I have previously mentioned here as one of only three diseases that get less funding than CFS: Pick's Disease, hay fever and vulvodynia. I have never said these illnesses do not deserve funding. I am complaining about where CFS, which is a disabling illness costing the millions of sufferers and the nation hundreds of millions of dollars, ranks in the long list of diseases being funded for research.

    I myself have been unable to earn at least $900,000, unadjusted from 1988 value of the dollar, since becoming disabled. Even if they don't care about our suffering, they ought to be interested in the taxes the IRS is not getting from us, and the disability payments going to those of us lucky enough to have worked long enough to qualify for them.

    HIV/AIDS is getting $ 3184 million next year. Since the cause and some treatment is already known, I really think a few hundred million could be spared for ME/CFS.

    $82 million for infertility...in an overpopulated world

    And the list goes on and on. I only 'pick on' malaria because the funding for it is so blatently out of balance as a public health threat in the US. I think American taxpayers have a right to expect a higher priority for diseases affecting Americans than this funding imbalance provides. Anyone may disagree with me, of course. Maybe those 1300 world travelers who got malaria outside the US are more deserving of funding into their illness than the 1-4 million Americans with CFS.

    But $1.25 per person vs. $89,000+?
     
  8. shiso

    shiso Senior Member

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    I may be mistaken, but I believe NIH and CDC (which are both under DHHS) each have their respective annual budgets for CFS. I think the NIH money (the $5m on that NIH chart) is available for funding research grants NIH deems worthy, and CDC has its own separate budget (which has also been around $4 or $5 million/year in recent years) for CDC scientists to run CDC's own research program. (Anyone: please correct me if I'm wrong.)

    Either way, it is a pathetic amount, even assuming $10 million/year and less than 4 million patients. (Of course, it would help if the CDC could accurately diagnose the disease and we had a better idea of the true prevalence rates!)

    It seems the lack of federal funding is the biggest overarching problem for the slow to non-existent rate of meaningful advances in ME/CFS research, doctor education, public awareness, access to care, access to disability benefits, etc. I'm always baffled and frustrated that CFSAC meetings and advocacy efforts revolve around how best to work within the pathetic amount (recognizing that they have to work with what they have now) -- like with the last year's evaluations of the CDC's insulting 5 year strategic plan, which seemed to assume a similar level of funding over the next 5 years (because that's the amount we're necessarily stuck with forever?? yes, if no one convinces Congress to do otherwise), instead of spending more time and resources focusing on the urgent need to exponentially increase the amount of funding.

    While comparisons with other diseases may be dangerous (Pick's disease may be a good example), I think objectively uncontroversial comparisons can be made effectively to get the point across that ME/CFS is ridiculously underfunded compared to less disabling, less prevalent, less costly diseases that get hundreds of millions in federal funding each and every year, and to point to disease for which incredible progress has been made in terms of treatment (lupus, MS, HIV) with the appropriate amount of funding.
     
  9. Dolphin

    Dolphin Senior Member

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    I didn't say it was you I was referring to. There is a small chance I am not remembering it correctly (i.e. it wasn't public) but I think on somebody's testimony to the CFSAC somebody made a comment which was cringe-worthy to me when I looked up the condition (it might have been Pick's Disease although maybe it was Niemann Pick disease or maybe I got mixed up and came across Niemann Pick disease and thought it was Pick's Disease - anyway, neither sound nice despite their name).
     
  10. jspotila

    jspotila Senior Member

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    You got it right. This is how the two agencies operate.

    I have tried, in the past, to make the point to the CFSAC by using the cost of lost productivity (not even counting healthcare costs) to CFS vs. the cost of lost productivity to diabetes. Asking for funding on par with the cost or burden of illness might seem less like take-from-one-illness-to-give-to-another. But in the past, the CFSAC has dodged even that by claiming that Congress makes funding decisions. This is true, but Congress makes those decisions based on WHAT THE AGENCIES REQUEST. And that brings us full circle back to your point that the CFSAC should be focusing on how much money the agencies and department are requesting for CFS research.
     
  11. Dolphin

    Dolphin Senior Member

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    I think this is more a point that the amount for malaria research should be decreased. There is no way CFS or virtually any other condition could get $89,000+ per person affected.

    Also, if they reduce the pot for malaria, what would usually happen would be that tax money would either be spent on other areas of expenditure (not just health research), or alternatively, the money might be spread across the whole health research budget. (or they might cut taxes as don't need the money).
     
  12. Kati

    Kati Patient in training

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    If there is no new money from the government, shouldn't some money from one or many other programs be redistributed- a budget of many BILLIONS would be hardly touched if they lost a few millions. If I remember well there was 18 billions total allocated to communicable diseases, including emerging diseases, STD, AIDS, malaria, Lyme, etc.. Can XMRV gets its share please? How about the 6+ billions allocated to women's related diseases and conditions?
     
  13. gracenote

    gracenote All shall be well . . .

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    I was having a discussion with Cort on one of his blog postings of The CFSAC Comittee on Itself, XMRV, the CDC and More regarging the study Dr. Hartz was able to get approval for. We not only need to be pushing for more funding, but we need to make sure the funding is being used in a way that will benefit ME/CFS patients.

    Cort and I disagree on this project.

    See the Comments section for the rest of the discussion.
     
  14. oerganix

    oerganix Senior Member

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    Yes, this seems like an approach that might be productive, to get some CFS research out of some of the programs that already have a pile of money, like cancer, communicable diseases (if it proves to be communicable via XMRV) and autoimmune diseases, which is very well funded. Cancer research seems to have money to burn. Another good reason for WPI to be looking into possible connections of XMRV to other illnesses...to get some funding from those better known, more 'popular' diseases.

    I was looking at some of the projects that already have been funded and I saw one, under cancer research, that was studying how QiGong can be used to alleviate pain after colorectal surgery.
     
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    No. We will not go to the Back of the Bus Anymore.

    I agree with Tom K that we should try to pick the diseases which will further our cases the best.

    I agree with Oerganix and Shiso that comparing our funding to other diseases is proper and useful since one always needs context, especially in persuading govt decision makers. Additionally, the injustice is starkest when put in context. These other diseases must get funding, AND we also deserve funding proportional to the illness burden and societal burden this disease causes (in relation to other diseases).

    The current stark disparity in funding and other mistreatment we suffer at hands of our governments are a violation of our civil rights and human rights and we must not stand for it. Let's stand up for ourselves and all those who are too sick to stand up for themselves. Standing up for ourselves can change history dramatically for the good of everyone.

    One person saying "No. I will not go to the back of the bus anymore" changed history. We can do the same. I say "We will not go to the back of the bus anymore." I really hope you can all keep standing up or join in standing up for our civil rights! Silence = A Living Death.
     
  16. caledonia

    caledonia

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    How about if you take the average amount per person spent on all other diseases and ask for that amount per person for CFS?
     
  17. KnightofZERO

    KnightofZERO

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    Yes we should do that, or "demand" it as some researchers I have heard talk about. If we only got a 100 $ per person, quite low compared to disorders such as HIV, MS etc. that would be, based on the absolute most conservative estimates about 20 million $. We need to specify that it got to research into the physiologic causes though otherwise our government could do a "UK" and spend it all on psychosocial studies.
     
  18. Dolphin

    Dolphin Senior Member

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    You can try but not all the diseases have the same burden attached to them e.g. hay fever is different from Cancer. Even within Cancer, some of the skin Cancers are not as serious as other conditions.
     
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Finally made it to the end of the thread. Been trying for three days. I have been on vacation, so I am not doing as much board reading as usual. Also needed to hear meeting.

    First of all, while Unger was there, the other CDC guy is there all the time. Why isn't other members putting him on the spot as to funding amount, criteria, definition used in studies and lack of education program for clinicians? Can he explain why CDC isn't giving more of their pie piece to CFS?

    And, I have seen government people occupied with shiny new buildings before. Unger, happy for your building, but don't lose sight of your priorities, it's the sick people that you need to be concerned about. Never, even in one year, should a new building prevent you from serving the people.

    Great you believe fatigue is not the only criteria for diagnosing this illness. But if you put emotionally unstable, people with poor memory, you are looking at a different illness. Maybe you and Dr. Jason ought to have dinner together one night.

    And that brings me to another point, having just one-day meeting sure does cheat access. As many may know, much progress can be made in a hotel lounge over drinks. If the CFSAC members are there only one day, that opportunity is lost for casual conversation outside the meeting.

    Dr. Jason said his subcommittee meets monthly by phone. Good for you. Now, can we get these meetings to create something tangible?

    These meetings are much more delicately handled than the Congressional hearings, like the one with Toyota guy testifying. These CFSAC members are appointed and can only ask and say "please." But Congressmen can demand and can do something. We need some hard questions asked. I get the feeling, from my experience with local politics, that sometimes Committee members want to have such challenging questions and hard points brought out, but they need to keep open communication, so best public does that. And so next time, public will be able to ask ex-officios questions. I still don't see how this will work. If the ex-officio does the political side-step dance around the answer, answer non-answer we call it in the news business, as we saw Holmberg do, will public person be able to do follow up to pin the person down?

    Recommendations could easily be organized in priority list with stars next to items that cost less than $10,000 to implement. That way, the assistant secretary can easily see both, priority of need, and what cheap things he can do to make biggest impact.

    I understood what Jones meant by her statement when she said it.

    Ok, the NIH lady. She is in government mode of don't do anything until the evidence is in. But, by then, many more will be infected. Remember 4% healthy carry this. Although banning CFS patients doesn't help that figure, it does push XMRV into the public consciousness. I understand that there is no point to putting it into public consciousness if there isn't even a reliable test for it. It is a catch-22. But, seems to me, someone needs to move on this. This thinking she has is why HIV contaminated the blood supply for many years. How soon we forget. It took time to know for sure, get all the science in, to know HIV causes AIDS and is transmitted by blood. How many people were infected through blood supply in the time they waited for all the evidence to come in. I know it often doesn't happen in government, but proactive can prevent problems down the road. Common sense is what needed here, not standard procedure. Can we say France? In France, former health minister was convicted of two cases of neglect involving HIV contaminated blood because he should have known they could be infected. (Notice, he did not have to know they were, just should have known they could be.)

    And the recommendation of CFS education into Health Reform, great idea. But the wording of that is awkward. Something about ensuring the challenges of CFS education.... something like that.

    How about:
    Since CFS is an underserved patient group, with at least 1 million ill and 85% still undiagnosed, CFS education should be given high priority in all clinician and public education programs under Health Reform.

    Tina
     
  20. usedtobeperkytina

    usedtobeperkytina Senior Member

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    And....

    As for answers to questions. I can see no logical reason why the assistant can't give a response to all the recommendations. His response does not have to be affirmative.

    Here are some options:

    A. Yes, great idea, we will allocate X dollars to that immediately. It will be accomplished through the _______agency.
    B. No, we don't agree. So we won't do it.
    C. Good idea, but we have no funding source at this time.

    This type of formal answer would be invaluable in knowing what the CFSAC should do next. It will help them to focus on the recommendations that are feasible. It will allow them to know where difference of opinions are, so they can bring in more facts to support their recommendation, to know what they need to present a case for. It also lets us know what we may need to be lobbying Congress to fund.


    Now, Miss NIH lady, as to answering questions from the public. Eeek, that is uncomfortable isn't it. But, as a government employee, you are accountable to the people who pay your wages. It is very uncomfortable to be accountable to someone else, especially a fickle mass of people, even more so an angry mob.

    But, in this sterile environment of committee meetings, you can say that you are not at liberty to divulge that information. Or you can say, "That pertains to research applications or unpublished study results and I can not release that information at this time." As Jones said, town hall meetings and press conferences are common. If you don't know how to say you can't answer something, then you need to go down a few notches in your position level.

    Tina
     

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