Monday, October 4, 2010


Three ME/CFS patients launch a campaign to get the government’s attention

Beginning today, ME/CFS patients Rivka Solomon, Charlotte von Salis and Robert Miller are launching the “Time for Action” campaign. Using email, fax and phone, the trio are asking ME/CFS patients to contact Director of the National Institute of Allergy and Infectious Disease Dr. Anthony Fauci and Director of the National Institutes of Health Dr. Francis Collins every day and pose the same question: “What have you done for ME/CFS today?  Patients and their families are waiting.” 

Robert Miller organized the September 7 meeting of nine patients and their families with NIH scientists Michael Gottesman, Paul Plotz and Roland Owens, in Bethesda, Maryland, right before the NIH's first international XMRV conference began. Along with Miller, Solomon and von Salis were among the patients who attended.

Solomon’s mother was also there—and came up with the idea for the new campaign. “Bug them every day!” she advised her daughter.  It was a light-bulb moment for Solomon.  “It lets the government know we’re watching them, waiting for them to help us," she explains. "And it’s what we’re calling ‘advocacy made easy.’ This way we can include everyone in the action campaign—even the severely ill. The way I see it, and I'm speaking for myself personally here, this illness and we patients who suffer from it have been ignored, delegitimized, psychologized and marginalized since the early 1980s, when many of us first got sick.

Solomon, a playwright from Boston, and Miller, a former fire boss in Utah (who moved to Reno, Nevada, last year for the experimental HIV and ME/CFS intravenous drug Ampligen from CFS-literate physician Dr. Daniel Peterson) have been ill for a quarter century.

Von Salis, a lawyer, lives outside Washington, D.C., and has spent the last two decades bed-bound or house-bound. “NIH Deputy Director Gottesman pointed out during our meeting that AIDS activists definitely had an impact on the NIH's response to their disease,” von Salis recalls. “ME/CFS requires as strong a response from the NIH as AIDS did, especially in light of recent research indicating a retroviral association. Increasingly greater numbers of patients, their families and friends are completely fed up with the lack of governmental response to ME/CFS and are prepared to act, just as PWAs [persons with AIDS] did. This simple campaign puts the NIH on notice that we’re not about to remain silent and accept the status quo. If we don’t get a response or the response is inadequate, we will follow up with another action."

Solomon agrees.  Although she was pleased with the September 7 meeting between ME/CFS patients and NIH officials, as well as the NIH two-day international XMRV conference, she’s looking for a little less conversation and a little more action on the part of both patients and government.  "We won't get fast-track clinical trials by waiting for them," she says. "We need to demand them. We won't get funding for ME/CFS centers of excellence by waiting for them. We need to demand them. The NIH will see a repeat of the ACT UP days of AIDS activism if they don’t move to actually help us ME/CFS patients, and fast."
Contact info:
National Institutes of Allergy and Infectious Disease
Director Anthony Fauci
Phone: 301-496-2263
Fax: 301-402-3573

National Institutes of Health
Director Francis Collins
Phone: 301-496-2433
Fax: 301-402-2700

Robert Miller is tracking patient response to the Time for Action campaign and would appreciate patients sending him a copy of any emails sent to Fauci and Collins:


  1. You guys in the States are so much more on top of this than we are in the UK. We have 250,000 odd sufferers but little action of the type you propose in the USA. I think part of the issue is that whereas you guys seem so sure that XMRV is clearly a causal link in CFS/ME, here in the UK there seems to be no positive confirmation of it's existence in our patient population. There is such a gap between what is happening in our two coutries.... Good luck with the campaign,

    Simon, London, UK

  2. Great idea , great article !
    I agree a 100% ,

    We have to DEMAND and back it up with action !


  3. I am Candadian and have participated in the campaign. I reminded U.S. officials that like my country they have a human rights obligation to provide the conditions to the highest level of attainable heath to citizens according to international disability law and convention. Katy can you post a note about international disability law and government responsibility to citizens? Maybe we should start framing XMRV research and treatment in a human rights framework.

  4. For inspiration, here's their "How To" video:

  5. Anonymous, I'm Canadian as well, can you contact me at

  6. My family and I are going to cc: Secretary Sebelius also.

  7. I'm in Belgium and I follow Nomiskx completely. Just wrote a note on a Belgian board about the fact that nobody over here does anything. If I compare it with the fighting spirit in the US it's really heartbreaking. But I follow Nomiskx in his/her explanation for all this.
    Nevertheless, I joined the campaign and just sent my email to Fauci and Collins.
    Good luck!

  8. Wonderful idea, and even if treated as spam, many messages will get attention!

    If you want to "activate your advocacy" join

    We need you over there! Fastest growing Advocacy Campaign in the World, and it's worldwide!

  9. Is this the same meeting where:

    "Gottesman volunteered to these patients who had come so far (and at what personal cost?) that they had lost a fighter for their "cause" when NIAID's Stephen Straus died."

    I almost threw up when I read this on Hillary's blog. Especially when I read that it wasn't even challenged by the PWC's in attendance.

    It's tragic if he (Gottesman)actually thinks this way and I have to think he just has no idea what he is talking about, and more tragic if the PWC's don't recognize how it was Stephen Straus that sealed our fate at the NIH, by offering his 'research' (And there was NEVER ANY)that CFS was psychological. He never once attended Any conferences on CFS as well. He was Bill Reeves evil twin.

    I applaud us all for getting out there every day with emails to them all. I have tried, and they never get them imho, but to an intern whose job it is to filter them out, and hit the delete button. And I couuld say they'll never know, for why would they even ask the intern how many emails he/she got regarding ME/CFS and XMRV?

    I'll continue to try though. But I'd rather get their personal vmail numbers there at the NIH instead.

  10. Thanks for Robert Miller's contact information. I hope it serves as a independent tally we can use!

  11. My Letter to Director's Collins - NIH & Fauci - NIAID:

    Dear Directors Collins and Fauci,  

    ME/CFS research funding is stuck at $4 per patient. The lowest of any budgeted disease, this with over $20B of economic damage. Now with an association to a new infectious human gamma retrovirus? This level of funding remains? Now with several neuroimmune diseases showing much higher prevalence with XMRV / PMRV / MLV-Related gamma retrovirus infections? Really?!?

    With 5-8% of controls showing infection, this is beyond a crisis. Where is the emergency budget? Where is action to clear the blood supply? Where are the anti-retroviral trials that would show by improved health that the retrovirus does cause pathology?

    Dr. Michael C. Snyderman MD, Dr. Jamie Deckoff-Jone MD and her daughter have all improved dramatically on HAART therapy. We need to expand this to centers of excellence; we need the all the unacted upon CFSAC recommendations to ACTUALLY be acted upon!

    Are you going to continue to stand by and watch the “natural history” of an AIDS-like pandemic burn through the population? If done by a foreign country this would be cause for a declaration of war!

    This IS a war - what side are you on? What have you done for ME/CFS today? Patients and their families are waiting.

  12. Thank you Robert, Rivka and Charlotte, and thank you, Mindy, for making it so easy by posting simple cut-and-paste instructions and addresses for the email campaign here all in one place on your blog. So easy that even us patients with serious cognitive problems and confusion from more-complex or lengthy tasks could get these emails done and off into the ether before confusion knocks us down. Thank you!
    I sent my emails earlier today, including to Sebelius and cc's to Robert.
    Go team! Cheers for that fighting spirit (well said, Els)!

  13. I am in the Uk but have joined in the campaign. Where the USA leads the rest must eventually follow.
    We should be doing the same thing here.
    I think it could happen. Watch this space.
    Thanks again to Mindy for all you do.

  14. Right, so I've started faxing cartoons, annotated with the suggested messages, to Dirs. Collins and Fauci. Every day, it's another observation about ME/CFS, told by a rhesus macaque I draw myself. (All else is computerized.) Why the macaque? Because macaques have arguably done more to advance CFS research than senior NIH officials have. No, I can't really draw well, but it looks like a hairy primate, anyway.

  15. Joe Landson, If you email me a copy of your drawings/captions, I'll post them on the blog:

  16. The White House has a Facebook page. Every day I write this question on that page. "When is National XMRV Testing Day?". Won't you join me?

  17. Karen, I saw your comment on Facebook and I copied you. I'm posting to the White House Facebook page every day too. I also found that the National Institutes of Health (NIH) has a Facebook page so I'm posting there every day too. Both of these pages have an enormous volume of posts, so that they move very quickly, but it's easy to do this and maybe someone will see it.

    I hope you don't mind me copying you, Karen. After all, imitation is the sincerest form of flattery.

    Patricia Carter

  18. Fine initiative here. I wrote them and I'm guessing they received it.

    I'm also writing a law professor that I heard speak about her own difficulties with getting diagnosed and treated for her own disability. I'm hoping they can give hints from a legal perspective.

    Should the CDC be included in this contact list? I thought they dealt with diseases.

  19. @anonymous re Youtube video. I was not able to get that link to work, do you have a different one?

  20. Mindy, you have a knack of getting answers for (or worded aversions to) delicate questions, so here goes:

    NCI (Dr. LeGreid) stands up at CFSAC as says the Science XMRV study and PMLV study should be viewed as separate phenomena for now. Yet not only did Dr. Mikovits say Lo/Alter backed her up; Alter himself has insisted the same.

    How can the two findings be related, especially since XMRV has so little relative variance?

  21. Please note the campaign has been deemed a success! The advocates who began the campaign have asked that we stop emailing. See more:


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