CALLING ALL ACTIVISTS: Tell Dr. Francis Collins— Don’t Miss Your Deadline! Release the ME FOAs now!

Categories: Actions

The NIH announced that it would fund ME research by publishing two Funding Opportunity Announcements (FOA) by Dec. 2016, but it is about to miss its first deadline.

On Oct. 21st, the NIH released two Notices of Intent to publish two FOAs for ME/CFS by Dec. 2016. As of today, they have not been released.  

The two FOAs are intended to establish collaborative research centers and a data management and coordination center. These FOAs are expected to provide set-aside funding, critical to attracting researchers driven away by a lack of funding.

Join ME activists from around the country to demand that NIH Director, Dr. Francis Collins, keep his promise to publish two FOAs, which will provide funding to researchers investigating ME.

Join us in tweeting, emailing or calling him now before the year end. See sample scripts below. We will not wait any longer for Dr. Collins to act on his word.

Speaking about the lack of FOAs for ME, activist Jennie Spotila said, “More than halfway through December, the promised RFAs for the ME/CFS research consortium and data center have yet to materialize. Will we see them this month? Your guess is as good as mine.”

Terri Wilder, an activist from New York, stated,  “Francis Collins has disappointed the ME community once again with his broken promises. When is the charade going to end?  People with ME demand that the two FOAs be released now! Our lives depend on it.”

Suggested tweets:

@NIHDirector Where are the ME Funding Announcements?  Release them NOW!
@NIHDirector You promised ME Funding.  People are sick. Do your job!

@NIHDirector Release the ME FOAs NOW!
@NIHDirector People are sick. Release the ME FOAs NOW!
@NIHDirector You have had more than a year to keep your promise and issue RFAs for ME. Do it now!

Suggested email:

E-mail Address: execsec1@od.nih.gov and francis.collins@nih.gov

Dear Dr. Collins,

My name is _____ I have been sick with ME for ____ years. I have lost ____  OR

My name is ____ My daughter/son/family member has been sick with ME for ____ years. She/he/they has suffered ___ and lost ___

(Keep it brief so that you can get quickly to the ask below)

I was thrilled to read the NIH’s two Notices of Intent to publish two Funding Opportunity Announcements (FOA) for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) by Dec. 2016.

To date, they have not been released. The FOAs are critical to moving research forward for a disease that is destroying the lives of as many as 2.5 million Americans. We will not accept neglect any longer.  

Dr. Collins, we call on you to keep your word. Release the two FOAs now.

In urgency,

Sign your name

Suggested phone call:

Phone Number:  301-496-2433

My name is _____ I have been sick with ME for ____ years. I have lost ____  OR

My name is ____ my daughter/son/family member has been sick with ME for ____ years. She/he/they has suffered ___ and lost ___

I’m calling to leave a message for Dr. Francis Collins. I am asking Dr. Collins to release the Funding Opportunity Announcements that he promised for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) now. The FOAs are critical to moving research forward for a disease that is destroying the lives of as many as 2.5 million Americans. We will not accept neglect any longer.  


Categories: Actions

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14 comments on “CALLING ALL ACTIVISTS: Tell Dr. Francis Collins— Don’t Miss Your Deadline! Release the ME FOAs now!
  1. Cindy Downey says:

    HI MEAction,

    Thank you very much for organizing this!

    NIH can rush to fund other projects, but not this one!

    Possible reasons for stalling: 1) they don’t care about persons with ME; 2) still believe ME is a psychological illness; 3) administrative glitches that have lasted 2 whole years!!! 4) continued pressure from vested interests to maintain the status quo; 5) concerned for their careers – who wants to be first to admit ME is real, and provide SERIOUS research funding; 6) doubtful the funds will be used;7) or all of the above, and then some.

    Would a petition help, or is letter writing more effective at this point?

    Thanks very much again for organizing this! Let’s hope it does the trick!

    1. Jaime S says:

      Why one reason only, Cindy? In all seriousness, I expect it’s bits and bobs from multiple categories.

      It’s important to remember that individual organizations like NIH aren’t a monolith, either: they are made of up people who have wildly varying opinions that lead them to wildly varying degrees of support for our community, and for research into the disease.

      I think you may have hit the nail on the head regarding that no one wants to be ‘first’ to admit that ME (or CFS, or ME/CFS) is ‘real’. There has been so much controversy that those who stick their heads up may well get the hammer.

  2. Lolly Vann says:

    This is an important request, with the pending administrative changes there is much not known about who will be at the helm at NIH in 6 months, or when this opportunity will come again. Lets not allow this slip by. All Guns Forward Please, post, tweet, call, get loved ones involved.

  3. Darla N. says:

    I called the provided number, and the staffer told me I should contact a NINDS doctor who is advising Dr. Collins—sorry, I didn’t catch the name—at 301-496-3167. I opted to e-mail instead because I wanted my message to go straight to Dr. Collins, not someone else who is unlikely to see the urgency. Thanks for helping us hold Dr. Collins accountable.

  4. Cindy Downey says:

    HI MEAction,

    Breaking News – so to speak!

    The National ME/FM Action Network has just sent out today’s very supportive statement from the Canadian Institutes of Health Reseach (CIHR) about the biological reality of ME, and the need for more research. CIHR does note the previous NIH announcement regarding ramping up research funding. Perhaps this if more info to email to NIH???

    Dear Friends

    This morning, the Institute of Musculoskeletal Health and Arthritis (IMHA) released a statement on ME/CFS. IMHA is the institute designated by the Canadian Institutes of Health Research (CIHR) to focus on ME/CFS and FM. The statement can be found in the Nov/Dec 2016 IMHA newsletter which has been distributed by email and should be posted on the CIHR website soon:

    http://cihr-irsc.gc.ca/e/12218.html

    The statement is extremely supportive. It affirms the biological basis of ME/CFS, it encourages researchers to enter this field of study, and it affirms CIHR’s commitment to supporting research. Fibromyalgia is also recognized in a positive way.

    We would like to express great appreciation to Dr El-Gabalawy, Scientific Director of IMHA, and others at CIHR for speaking so strongly in support of ME/FM research.

    Margaret

    Margaret Parlor
    President
    National ME/FM Action Network

    __________

    With regards to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), CIHR – IMHA is committed to supporting high-calibre research that will contribute to the evidence base and develop capacity in this field. ME/CFS is a chronic, complex, multisystem illness. Preliminary research has linked it with disturbances in energy metabolism, immunology, brain and nervous system functioning, cardiovascular functioning, epigenetics, and the microbiome. More research is needed to determine the underlying pathology of ME/CFS, advance understandings of its relationship with overlapping conditions such as Fibromyalgia, and establish effective treatments. An estimated 800,000 Canadians are affected by ME/CFS, Fibromyalgia, or both. The National Institutes of Health(NIH) in the United States and the Stafford Fox Medical Research Foundation in Australia are ramping up investment in biomarker discovery, diagnostic testing, and patient subgrouping for ME/CFS. You will see in this newsletter that CIHR-IMHA recently launched a series of Catalyst Grants, with two dedicated to ME/CFS. These grants are intended to serve as seed money to support research activities that represent a first step towards the pursuit of more comprehensive funding opportunities. We are also seeking to engage in partnerships with other funding agencies to advance the ME/CFS research agenda. This is a fascinating area of research in which investigators from many disciplines have the potential to make groundbreaking contributions.

    L’IALA des IRSC est soucieux de soutenir la recherche de haut calibre sur l’EM/SFC, qui contribuera à l’acquisition de données probantes et au développement des capacités dans ce secteur. L’EM/SFC est une maladie multisystémique complexe et chronique. La recherche préliminaire a permis d’établir un lien entre cette maladie et une perturbation du métabolisme énergétique, l’immunologie, le fonctionnement du cerveau et du système nerveux, le fonctionnement cardiovasculaire, l’épigénétique et le microbiome. Il est nécessaire de pousser plus loin la recherche afin de déterminer la pathologie sous-jacente à l’EM/SFC, de mieux comprendre son lien avec des affections concomitantes comme la fibromyalgie, et d’instaurer des traitements efficaces. On estime qu’environ 800 000 Canadiens souffrent de l’EM/SFC, de fibromyalgie, ou des deux affections. Les National Institutes of Health(NIH) des États-Unis et la Stafford Fox Medical Research Foundation de l’Australie ont l’intention d’accroître leurs investissements dans la recherche de biomarqueurs, les tests diagnostiques et le sous-groupement de patients en ce qui touche l’EM/SFC. Comme en fait foi le présent bulletin, l’IALA des IRSC a récemment lancé une série de subventions Catalyseur, dont deux réservés à l’EM/SFC. Ces subventions se veulent des fonds de démarrage pouvant soutenir des activités de recherche qui constituent une première étape vers des possibilités de financement plus élaborées. Nous souhaitons établir des partenariats avec d’autres organismes de financement dans le but de faire progresser la recherche sur l’EM/SFC. Il s’agit d’un domaine fascinant donnant à des chercheurs de diverses disciplines la possibilité d’apporter leur audacieuse contribution.

    National ME/FM Action Network

    512, 33 Banner Road

    Nepean, ON K2H 8V7 Canada

    _______________________________________________________________________________

  5. Cindy Downey says:

    Hi Jaime,

    I agree, the stalling, and whatever else one wants to call it have multiple reasons. And, yes, there are widely varying opinions on ME at NIH, and elsewhere. It has, of course been a long running disaster that the more negative views have run the show.

    On the other hand, today’s news from CIHR is very hopeful. it does prove what you said, opinions vary.

    And, yes, anyone who sticks their head above the ME parapet could catch an arrow for their trouble. This goes for bureaucrats, researchers, physicians etc. But, someone has to be brave about this, and go first! It seems CIHR is now leading the charge. What sayeth NIH?

    All kidding aside, I agree with Lolly Vann – this is very serious. we cannot let this opportunity escape. Everyone, please send lots of emails, tweets etc., and broadcast your request to others to do the same! Thank you very much! All the Best to the ME community this holiday season, and let’s hope 2017 is a landmark year for biomedical research funding, scientific findings and medical education about ME!

  6. Angela says:

    Isn’t Dr Francis Collins a woman?

  7. Bradley Baker says:

    My name is Bradley Baker. Twenty three years ago at the age of 38, when a particularly nasty and hard to shake flu virus was kicking everyone’s “butt”, I was no exception. Except that like everyone else it was taking longer than the “week to ten days” to clear up. For most it seemed, 3 to 4 weeks passed before most felt well again. At one month I felt about half way there, but “normal” turned out to be over six months away. It lasted from Feb.’93 to Sept. 93. Just 2months later, at Thanksgiving time, it came back with a vengeance. It has never gotten any better, but in fact has gotten worse, perhaps due to age…. After having to give up my job, then my house and all other possessions I found the right Doctor (Lucinda Bateman) and got a diagnosis. Disabled SS participants are entitled to an answer and disability I was told after 6 months by law (12mos) was closer to reality. Due to attitudes toward this poorly understood illness, I waited 2 1/2 years before recieving my benefits. A lot can happen in 2 1/2 years to a person who cannot work and finds personal functions alone, extremely taxing. A lot can and does happen, vey little of it good. I found ways to cope, but they all depended on the good people of this great country who refuse to let themselves and their neighbors suffer from devastating illness. My life was taken from me but I still had to find a way to hang on…. untill someone found a cure or an effective treatment. At 32 I had quit smoking, gotten strong physically and started back packing the Wind River Mountain Range. I was probably close to as fit as I had ever been, so yeah, I felt cheated. I have developed, worked through and redesigned strategies for coping getting by and holding on… for 23 years. I just turned 62. I will never see Mitchell Peak or Lonesome lake again. We are no closer to effectively feeling any relief from this disease than we were in 93. Correction…There has been tireless work from a small few. Too few with too little resources. Why? because this illness is difficult to get a grasp on. Difficult to define, Diagnose and to a clinician, difficult to separate from a number of real, but relatively minor conditions. Unfortunately, that does not make it a minor affliction. This is in every sense, a devastating illness. On a daily basis, I strive to be in a state of mind, health and environment that allows me to be able to occasionally forget for a short while that I am so ill. Please help me believe that I have not been “sticking it out” for 23 years for nothing. I would like some time in this life I have left to pack in a little better quality. Being productive would be a hell-of-a good way to do it. Sincerely, Bradley Baker

  8. Irene says:

    I would suggest to play the “Jesus” card with Dr Collins as he is a big evangelical Christian who still believes in science. There are many easy ways to do this for example: Add something like turning your back on the least among us is like turning your back on Jesus. Or use various bible quotes like John 3:17 “But whoever has the world’s goods, and sees his brother in need and closes his heart against him, how does the love of God abide in him?” Also throwing in the ole: “What would Jesus do?” I’m not religious but was raised with Catholic Christianity of it so I think the arguments for the character of Jesus wanting us to be helped are valid as many do believe that Jesus served the poor, the forgotten, the sick, etc. Those of us with CFS/ME do have the lowest quality of life and live in poverty according to the CDC and Harvard’s own study by Dr Tony Komaroff which was replicated recently by the Norwegians. I do think Dr Collins is a good guy and giving him something he can relate to some of his values is a powerful tool.

  9. Robin says:

    I’ve sent an email but I did read an article by a congress woman that said phone calls are the most effective means of advocating. Emails just get shunted in bulk to generic answers.

  10. Laurie P says:

    We need to get Dr. Davis and Jen Brea on Charlie Rose to discuss Dr. Collins interview 11/04/15 https://charlierose.com/videos/23367 (15:58 CFS) and where we are/aren’t now and what needs to happen.

  11. Elizabeth Edwards says:

    Bradley Baker – Thank you so much for sharing your story. While everyone’s story is unique in its particulars, many of the folk reading this (myself included) will have broadly similar ME biographies to yours. So we unfortunately know and can sympathise only too well with the socially, emotionally and economically, as well as physically devastating effects of this illness, that you so clearly describe.

    I think the challenge being presented to us here is to try to get this message through to Dr Collins, to leave him in no doubt that we as a community need the ongoing mysteries of ME/CFS to be addressed urgently, seriously and constructively with appropriate funding for research programmes.

    Would you be able to send your story (all or in summary) and plea for help to him, via the email address provided? I do understand how much it may have cost you already just to get it down in writing here, but if you could manage to do this one more thing, it would ensure that effort is directed to where it could really make a difference. Thank you again for sharing.
    Wishing you all the very best – Elizabeth Edwards 🙂

  12. Sean W says:

    I can’t say of the update which came out today was planned or not.
    https://www.nih.gov/research-training/medical-research-initiatives/mecfs/update-funding-opportunity-announcement-me-cfs-research-consortium

    One of the problems of being ill (& often stressed)and waiting for news is that you can tend to fear the worst catastrophise.

    Rather than getting people globally to phone up or email Francis Collins. Could one well connected person done instead.?

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