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A collective show of force/ a common workplan

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by judderwocky, Jul 13, 2010.

  1. judderwocky

    judderwocky Senior Member

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    A Collective Show of Force
    http://xmrvaction.org/content/collective-show-force

    I'm probably preaching to the choir on this:

    The CFS/ME community has been pushed aside for many years. It goes without saying. On one hand the community has suffered greatly from deeply ingrained stigmas and misconceptions about the disorder and what it entails. These beliefs, deeply pervasive within the medical community, have made patient groups vulnerable to being pushed aside and ignored. On the other hand though... this is all changing.

    XMRV has had a critical impact on the way in which patient groups perceive themselves. The mystery surrounding the disease has perhaps made it harder for a firm group identity to emerge. An individual with CFS is often times dissuaded from seeking medical help. The illness's mysterious origins, the difficulty in conveying this to those both inside and out of the medical community, has made the disease highly personal. Individuals often suffered alone, trusting but a few others with a secret they were told to be embarrassed about. Needless to say discovery of the “third pathogenic lympotrophic human retrovirus” has completely changed the internal perception of the CFS community. This change has been facilitated by online patient groups.

    For many patients, these groups are the only place where they can find support and listen to people who have quietly endured the same symptoms they have. Now however these support groups are taking on a new role. As communities are becoming more aware of their marginalized status and the pathogenic nature of their condition, these communities are also becoming places of change. As perceptions of illness change, the political demands of these patient groups will begin to change as well.

    As these changes ripple through our social networks I believe it is important to take a moment and develop our strategy. Now is the time when our communities need to band together under a common creed: we need a common set of goals and initiatives to set before our elected officials.

    I believe that we should work to develop a plan that involves (at least) the following elements:


    1)Equal Inquiry: A reasonable figure for research funding comparable to other infectious illnesses. The recent article in Aids Reviews “AIDS REV: A Third Pathogenic and Lymphotropic Human Retrovirus” suggests that XMRV could be one of the most prevalent viral infections worldwide. An annual research budget for CFS twenty to thirty times its current level would be a starting figure.
    2)Changes to the Americans with Disabilities Act / SS : In reality these are two separate issues. There are many components to be addressed in each. A roadmap here is especially neccessary.
    3)Healthcare and medical coverage – Many of us do not have any insurance and do not have a primary care physician. For many of us, that ended with our livelihood.
    These are just a few things, but our community needs to collectively address them and define a unilateral inclusive work-plan.
     
  2. VillageLife

    VillageLife Senior Member

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    Thankyou Judderwocky! and thankyou for the wonderful website you made, in the coming months and years many people will find your site a comfort.
     
  3. Sasha

    Sasha Fine, thank you

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    You're doing a great job, Judderwocky (pace yourself! pace yourself!). Good to have a plan. Someone (possibly you, I can't remember) in the last few days suggested that all the relevant organisations should be speaking as one voice about the funding figure to go for - no good having different groups asking for different amounts.

    How to get to the right amount to ask for? I think this is a question that calls for some expertise in health economics or at least draws on research about funding in relation to other illnesses of equal severity and prevalence but taking into account that if you hit a new virus early on you have a chance for mass prevention, not just treatment or cure. So XMRV is a sort of combo of different aspects of MS, Sars and HIV, among other things!

    I don't know how to answer that question but I would have thought that XMRV researchers do and are asking themselves it now. What about asking IACFS members such as Nancy Klimas, as far as US funding goes? Maybe they will be commissioning someone to do some quick and dirty research on what figure would make sense.

    Does anyone know how this kind of thing gets underway (i.e. picking a number to lobby for)?
     
  4. boomer

    boomer Senior Member

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    And what would that funding figure be for my country, Canada? I think we spent $200 million (something like that) for h1n1. I think a research budget of 20 or 30 times more than the current budgets of governments is too low.
     
  5. birddog

    birddog

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    A starting point would be the same amount we current provide for AIDS research.
     
  6. Sasha

    Sasha Fine, thank you

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    But HIV is much less prevalent than XMRV in the US (if the background rate of 4% in Science study is in the right ballpark). Even if we asked for the same amount in proportion to prevalence, doesn't it make sense to throw money at it now to prevent new cases? Also, untreated HIV causes death (cheap for governments) but if untreated XMRV causes CFS (expensive because we live on, disabled), surely that's an economic case for more money?

    I think this is a complex question - but however you cut it I think it means asking for a lot more money than it might first appear! Maybe a big ask would also help get the problem taken seriously (just as an expensive face cream is perceived as being worth more than the same stuff sold for $1). A $1 billion problem looks more serious than a $100 million one, regardless of whether it is or not.
     
  7. boomer

    boomer Senior Member

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    Was more funding provided for AIDS in the early years to get research started.?
    Whatever amount is asked to the Governments, they will assume that is the ideal ask and will always approve less than that.
     
  8. Gemini

    Gemini Senior Member

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    Judderwocky,

    Very good idea!

    Amount to budget could be backed up with a description of what we need.

    For starters, I propose The 3 T's:

    Tests: XMRV diagnostic & viral load tests; co-infection tests; immune system assays; genetic & gene expression tests; other diagnostics as needed.

    Treatments: clinical trials for XMRV, co-infections, immune abnormalities, and major symptoms.

    Transmission facts: fact sheet describing modes of XMRV transmission & preventive measures.

    All will require extensive XMRV physician & patient education programs.

    Gemini
     
  9. Hope123

    Hope123 Senior Member

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    RE: how much to ask and what to ask

    This is a book I read a while ago but you can read it online for free; you can read the exec summary and go for details with what you find interesting. It's called:

    Scientific Opportunities and Public Needs:
    Improving Priority Setting and Public Input at the National Institutes of Health


    and was commissioned by Congress in 1998. One of the main messages I took from it was that it wasn't just about number of sufferers, severity of illness, economic cost, etc. but also about whether the science was ready to address the question. So in asking for increased funding, one point that needs to emphasized might be that the science of CFS is ripe for the plucking. The question essentially is "Why fund NOW instead of later?" and also "Why this disease instead of others?" As much as it would be nice not to view it this way, we are competing with other illnesses for funding. (Unless we can get at that 50% of the federal budget that is non-discretionary and is earmarked for defense spending. Yes, 50% of US budget goes to defense, for good or bad.)

    http://www.nap.edu/catalog.php?record_id=6225#toc

    Some criteria they listed:

    * public health needs,
    * scientific quality of the research,
    * potential for scientific progress (the existence of promising pathways and qualified investigators),
    * portfolio diversification along the broad and expanding frontiers of research, and
    * adequate support of infrastructure (human capital, equipment and instrumentation, and facilities).
     
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I had a conversation last week with a non-CFSer about the cost of chronically patients who don't die quickly. Fascinating stuff.

    We saw it differently. She said there is motivation to keep people sick. I said there should be financial motivation on government level to make people well, less disability, Medicare and Medicaid, etc. Then the idea of cost of those who die compared to those who are chronically ill came up.

    Would think government would want to put more money into those who are chronically ill, because they just won't go away and their treatment cost money.

    Fascinating.

    Tina
     
  11. Sasha

    Sasha Fine, thank you

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    I agree - and it's not just state welfare costs, it's the loss of taxes on earnings. I can't understand how our governments are so blind to their own economic interest even if they're not bothered on the humanitarian side.
     
  12. citybug

    citybug Senior Member

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    There should be immediate emergency funds and annual budget. We are right at that sweet spot in science. I want to get something going fast. I pulled 20 million out of a hat, but you guys make me think 100 million to start (just guessing-should go look at budgets). The Congressionally Mandated funds at Dept of Defense cover diseases not covered elsewhere, but the amounts don't look high. Maybe that is a first question for Alter and at CFSAC and to ask WPI.
     
  13. Gemini

    Gemini Senior Member

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    birddog,

    "The federal government now spends more than $19 billion a year on domestic AIDS programs," New York Times, July 12, 2010, article "Obama to Outline Plan to Cut HIV Infections" pg A10.

    goal: reduce number of new HIV infections (about 56,000/yr) through testing & prevention

    Gemini
     

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