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Join Bob Miller's mass-email campaign for ME/CFS funding equality

Discussion in 'Action Alerts and Advocacy' started by Sasha, May 4, 2015.

  1. Sasha

    Sasha Fine, thank you

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    Bob Miller has just launched a major campaign targeting the NIH and HHS and asking for them to give research funding equality to ME/CFS so that it gets $100m/year like MS and lupus (per-patient funding equality would be about $250m/year - personally I'd ask for that, but that's just me :cool:).

    He's produced a template email for you to send and is aiming at 1,000 emails (which he'll be able to count because copies will go to his wife's email account).

    He cites the IOM and P2P reports in the email to support his case, but I hope that even those who have objections to those reports will edit the template to suit their preference and still join in the campaign.

    What matters is that we have a big-hitting campaign and a massive change in funding levels. :)

    Details are on Cort's blog but I hope that neither Cort nor Bob will mind if I reproduce the template email in the post below to make it easy to copy.
     
    Last edited: May 4, 2015
    sickntired771, ahimsa, Simon and 5 others like this.
  2. Sasha

    Sasha Fine, thank you

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    INSTRUCTIONS
    Copy and paste the email addresses and the email text into your own email message. [Edit: the email address of Courtney Miller, Bob's wife, is in the 'cc' list so that she can count how many emails have been sent in the campaign, but if you prefer to keep your email private, you don't have to include it.]

    Personalise the signature with your name, how long you've been ill and where you live: and feel free to add your own personal story.

    Please ask friends or family members to also send an email. They may have to change a few phrases, since the template has been designed to come from patients.

    TEMPLATE

    Email addresses
    To:
    sylvia.burwell@hhs.gov, scheduling@hhs.gov, francis.collins@nih.gov, collinsf@od.nih.gov, brewera@od.nih.gov

    Cc: jarrettpublic@who.eop.gov, courtneymiller999@gmail.com

    Subject line: Equal Funding for Chronic Fatigue Syndrome (ME/CFS) Research

    Dear Secretary Burwell and Dr. Collins,

    I am disabled with ME/CFS, and I am writing to ask you to raise research funding for my disease to a level of $100 million annually, equal to illnesses like Multiple Sclerosis and Systemic Lupus.

    I want to highlight two scientific reports commissioned by HHS that were released in the last two months by experts independent of the ME/CFS field. They say the same thing: “The committee stresses that more research is urgently needed.”

    The Institute of Medicine, an arm of the widely-respected National Academy of Sciences, and National Institutes of Health’s Pathways to Prevention Program have issued urgent calls to federal health agencies and the NIH to conduct more medical research into the causes and treatments for ME/CFS.

    “Remarkably little research funding has been made available to study the cause of ME/CFS, mechanisms associated with the development and progression of the disease, or effective treatment, especially given the number of people affected.” Institute of Medicine

    “Unfortunately, ME/CFS is an area where the research and medical community has frustrated its constituents, by failing to assess and treat the disease and by allowing patients to be stigmatized….Over the last 20 years, minimal progress has been made to improve the state of the science for patients with ME/CFS…. Innovative biomedical research is urgently needed to identify risk and therapeutic targets, and for translation efforts.” NIH Pathways to Prevention Report

    NIH currently funds only $5 million annually for CFS research, despite the 1-2.5 million Americans suffering with the disease. That is not enough funding to spur breakthrough science, and I suffer without any FDA-approved treatments.

    By contrast, illnesses with fewer patients such as Multiple Sclerosis and Systemic Lupus receive more than $100 million annually in NIH research funding. Those diseases now boast diagnostic tests and many FDA-approved treatments because of the high quality research NIH has funded in those fields. That is what patients like me so desperately need, and I believe that is what it takes to fulfill President Obama’s 2012 commitment to elevate CFS at the NIH.

    I have no treatments and I am very ill. The FDA rejected the only medication produced for ME/CFS in clinical trials in 2013. Please help me by funding medical research into ME/CFS equally and urgently, so I can get well and return to work and my life.

    Patient Name:

    Years Ill:

    State:
     
    Last edited: May 7, 2015
    taniaaust1, ahimsa, Simon and 5 others like this.
  3. Mary

    Mary Senior Member

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    @Sasha - Thanks so much for posting this! I just sent the e-mail, after personalizing it a little.
     
    Gingergrrl, aimossy and Sasha like this.
  4. Sasha

    Sasha Fine, thank you

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    65 views... I hope that's 65 emails sent! :cool:
     
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  5. shannah

    shannah Senior Member

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    I'm not convinced it will do any good but it's a good idea. Let's flood them.
     
  6. catly

    catly Senior Member

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    Done, probably my 20th email to Burwell and Collins in the last year or so...also sent many emails to my senators/representatives. Maybe someone will pay attention this time?

    Oh and did I mention the 100 or so tweets? If only we could get a "flood" of people to respond--that would be nice.
     
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  7. *GG*

    *GG* Senior Member

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    Done.

    GG
     
    Gingergrrl and Sasha like this.
  8. Sasha

    Sasha Fine, thank you

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    I think this is what we've all been waiting for since the IOM report came out - a campaign using the report as the big weapon it is to call for more research funding, led by someone who is a recognised leader in the ME/CFS community and who can generate big numbers of patients in support.

    Let's get those 1,000 emails! :thumbsup:
     
    SOC, mango, Valentijn and 2 others like this.
  9. Gingergrrl

    Gingergrrl Senior Member

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    @Sasha thanks for posting this and hope to be feeling well enough again to be able to participate in the future.
     
    Sasha likes this.
  10. Tuha

    Tuha Senior Member

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    I have just 2 questions - is this daily campaign?

    and also for the people outside from the US?
     
    taniaaust1 likes this.
  11. sarah darwins

    sarah darwins I told you I was ill

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    Being in the UK, I'm not sure I can legitimately join in with this effort, but I just wanted to say that Bob Miller has produced a wonderfully succinct summary of the plight of ME/CFS sufferers. Great work.

    I'm going to keep a copy of it and maybe recycle parts of it for use this side of the pond.

    Good luck over there!
     
  12. Sasha

    Sasha Fine, thank you

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    No, it's not daily.

    It doesn't appear to be for people outside the US - it would seem a bit odd to tell overseas agencies how to spend their money if we don't pay taxes there, I think - but I think everyone can make their own call on that one.
     
  13. *GG*

    *GG* Senior Member

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    Yeah, the US gives money to other countries for research. We fund studies of prostitutes in China!, so why not have a a say on this?!

    GG
     
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  14. Sasha

    Sasha Fine, thank you

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    Good point - weirdly, the US is part-funding the UK ME/CFS biobank.
     
    taniaaust1 and sarah darwins like this.
  15. Kati

    Kati Patient in training

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    i have sent it and I am from Canada. The thing is what happens in the US affects too many people from around the world. Send an email. Small gesture with potential.
     
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  16. ahimsa

    ahimsa Sick since 1990

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    Mail sent! (mostly the same, made a few changes)

    I also feel so jaded and wonder whether it will do any good. However, it feels better than doing nothing.
     
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  17. *GG*

    *GG* Senior Member

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    Yes, and not in a good way with our illness!

    GG
     
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  18. meadowlark

    meadowlark Senior Member

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    Like Kati, I'm in Canada and I sent one. An American friend of mine in Ohio sent one on behalf of "a friend" (meaning me).
     
    Last edited: May 7, 2015
    Sasha likes this.
  19. Kina

    Kina

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    Will copies be automatically sent to his wife's email account or do you have to CC. I think there is a privacy concern here.
     
    Sasha likes this.
  20. Sasha

    Sasha Fine, thank you

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    His wife is Courtney Miller and that's her email address in the cc line.

    If anyone is concerned about that, then of course they can leave it off.

    I'll edit the instructions to emphasise that.
     
    Sushi and Kina like this.

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