This is a call to action. I hope you will join me in demanding that Dr. Collins keep NIH’s promise to the ME community. (Edited to add: this action originated with MEAction. I’m just helping to boost the signal.)
The NIH announced that it would fund ME research by publishing two Funding Opportunity Announcements (FOA) by December 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 December 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 offices close for the holidays. 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
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.
Email check! Phone call! They won’t take a message and referred me to Dr Walter Koroshetz, Director of the Neurologic Institute,
He is heading this project 301-496-3167. I confirmed that Dr. Collins is his boss, but he is not willing to take a phone message. I could have gotten the email address I had, or a snail mail address.
Done!
Customized email sent (I think best on paper).
Hope you get a lot of response.
This disease is characterized mainly by a long list of broken promises and missed opportunites and people who don’t care. You need to keep calling the pros on it.
I also was told the message to Dr Collins will be forwarded to Dr Walter Koroshetz. I spoke with Heather and added we have been known to die 25 years earlier and I now have terminal pancreatic cancer.
Hi Jennie,
I hope lots of messages get sent! How about sending emails to Dr. Vicky Whittemore? I know she is a champion for the ME community, but she could forward people’s messages. The email I have for her is: vicky.whittemore@nih.gov
I don’t know if this is a current email.
Thanks for organizing this!
I did not take the lead on this; I’m just boosting the signal.
I don’t think people should email Vicky Whittemore because I don’t think she’s the road block. The problems are higher up, and that’s where we should direct our attention.
Hi Jennie,
Thanks. I agree about not emailing Vicky Whittemore. Just and idea. And yes, the road block is higher up. Would you suggest emailing Walter Koroshetz too, or just Francis Collins?
It’s endlessly ironic that persons with ME, one of the most debilitating diseases, have to summon, or divert meagre energy to push, and cajole governments into doing anything positive for us!
Thanks for boosting the signal!
Just Collins. Some people are getting bounced down to Koroshetz, which is not unexpected, but Collins is our focus.
I wrote to Dr. Collins at two addresses: the one in the instructions and also this one:
francis.collins@nih.hhs.gov. Even if he is not getting these directly, a heavy volume of emails should, one hopes, at least be reported to him. Needless to say, if no FOAs are forthcoming in the next week or so, why should we ever believe – even a little bit – anything he says?
Here’s my letter:
Dr. Collins,
An announcement of FOAs for this dreadfully suffering community of patients and their families is now overdue. Please make this announcement before the Holidays and give something of a present to these people with a disease you would never want to have. Its effects are beyond imagining unless you know people well who have ME.
These patients have been disparaged, neglected, dismissed as head cases for the better part of 30 years. So now, while we respond politely to promises such as you have made, we trust no one until actions are taken which HELP the afflicted. 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.
And where are the RFAs? The experts are out there; NIH has turned down many who have made grant proposals; it is not that they do not apply for funding. An additional $7 million of NIH funding this year is so little as to be almost an insult to those suffering as intensely as these patients do. Vastly more is needed. Why is the dedicated amount not at least that for MS, which has half the number of patients?
Please announce the FOAs, at least, before the Holidays.
Thank you.
Billie Moore, Advocacy Chair
NJME/CFSA, Inc.
Great letter, Billie. Thanks!
Hi Jennie,
Breaking News – so to speak!
This email from the National ME/FM Action Network advises us of the very supportive statement regarding the biological reality of ME (and Fibromyalgia), just in from CIHR/Canadian Institutes of Health Research. Very good news from Canada! The statement does note the previous NIH commitment to ramp up funding. Perhaps this is 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
_______________________________________________________________________________
Email sent!
Thanks Jennie for helping get the word out about this.
Hi
Regarding the Canadian funding you are so excited about its only $100,000 short term.
See:
https://www.researchnet-recherchenet.ca/rnr16/vwOpprtntyDtls.do?prog=2569&view=currentOpps&org=CIHR&type=EXACT&resultCount=25&sort=program&all=1&masterList=true
What we need is long term money.
Hi Andreas,
Yes, I do know the grant is $100,00 X 2. There are two grants. And yes, I do agree that we need long term funding, and that $200,000 is a drop in the ocean! CIHR funding for ME since 2000 totals just a little over $1.5 million, if memory serves. That’s about 22 cents/person with ME for each of these years. Absolutely appalling!
What I was talking about in my earlier email, and what I think you may also agree on, is that today’s clear, and supportive statement from CIHR, recognizing ME as a serious biological disorder is cause for celebration. Previously, CIHR had not appeared to demonstrate such an unequivocal position. This, coupled with the recent CIHR request for input from the ME community regarding suggestions for qualified grant application reviewers is progress. Certainly much more progress than the August grant application denial and reviewers’ rationale that “there is no evidence CFS is a disease” and the search for biomarkers is pointless.
We are still missing a huge part of the puzzle as regards government cooperation: 1) adopting the Canadian Consensus Criteria: http://www.mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf; 2) appropriate and comprehensive ME medical education for all health care providers; 3) a public education campaign; 4) much, much, much increased biomedical research funding, and 5) effective treatments. So, this is just the start. But we need to start with policy. And, it seems we have somewhat progressed in this area. Time will tell if we get more funding and the other pillars of support we need. I hope the time this takes is very short indeed!
Cindy
Sure policy is great, but as Dr. Collins is demonstrating it is a long way from policy to action that can be measured in $. It will be interesting to see how and when the CIHR’s 2x$100000 will be spent. Let’s hope it has nothing to do with GET or CBT related studies which are still receiving funding in Europe. The grant application denial mess in August was certainly an embarrassment. It will be interesting to see how this develops.
Thanks for all your activism in this area.
If folks want to send messages to the parties actually responsible for the 30 year old policy of non-research, then we need contact info for disability insurance executives.
Collins will be gone in a month. Why would he care if he gets a million emails from patients? The revolving door between industry and government does not include impoverished patients. We have no golden parachute to offer. We are too sick to show up at his office or home and cause a ruckus.
To Collins and the other well-heeled and well-connected NIH and CDC bureaucrats, we are as significant as a cockroach that escaped the roach motel.
Until patients are willing to recognize and target the actual perpetrators of the policy of non-research, the insurance industry will continue to laugh all the way to the bank.
Jimells–Can you please provide the names, emails, and phone numbers of the disability insurance executives that we can contact? It is most helpful to give specific information so activists can act on it. We also don’t know for a fact that Francis Collins is leaving. Since Collins is currently the NIH Director, he is the correct target. See link: https://www.statnews.com/2016/12/02/francis-collins-nih-trump/
And this link: https://www.statnews.com/2016/12/09/nih-director-francis-collins-says-wants-remain-post-trump/
Jimells, I am very interested in anything that you might know about the insurance industry/lobbyists, etc., especially in the US. If you can share here, great, but if not, maybe Jennie can help connect us. For now, I have to be Anonymous on here. Thanks!
I don’t have any specifics to send you, but this interview of deceased advocate Tom Hennessey by Cort Johnson will give you a good overview of how corrupt the system is. It is shocking to realize how little has changed politically since this interview was conducted nearly nine years ago.
http://phoenixrising.me/interviews-3/10317-2
Well, that’s the $64,000 question, isn’t it? Due to the opaque way that governments operate, we don’t even know if NIH/CDC is responsible for maintaining the policy of non-research or if it is decided by someone in HHS or even in the White House.
Supposedly Obama told NIH to do something about this illness, but all we got was the P2P Report, the IOM Report, an NIH study lead by a psychobabbler, and a lot of vague, feel-good public relations statements. We also got that horrible James Coyne attacking patient advocates. Sometimes I wonder if Coyne was hired by Collins to throw a stink bomb into the middle of the room – he sure managed to cause a huge divide in the patient community, at exactly the right time (for NIH).
In the US, we don’t have publicly available evidence of exactly who is behind the policy of non-research. We can speculate that UNUM is involved – they have a long sordid history of denying benefits to policyholders, as evidenced by a number of court decisions requiring them to pay out millions for their illegal activities.
In the UK we have evidence in the form of the UK Parliament Group on Scientific Research into ME (The Gibson Inquiry) [1]:
“CFS/ME is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. Therefore claimants are not entitled to the higher level of benefit payments. We recognise that if CFS/ME remains as one illness and/or both remain defined as psychosocial then it would be in the financial interest of both the DWP and the medical insurance companies.”
“[There are] numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here.” [2]
The thread that ties it all together appears to be Regius Professor Sir Simon Wessely, president of the Royal College of Psychiatry, founder of the “Science” Media Centre, etc, etc. He has been involved with US policy at least since 1991, when he was a keynote speaker at a conference organized by NIAID and NIMH (both part of NIH).
The Gibson report called for a proper investigation TEN YEARS ago. I suggest the time is right to demand that investigation as well as reparations for the immense harm and all the deaths caused by a deliberate policy of non-research.
[1] http://erythos.com/gibsonenquiry/Report.html
[2] https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome#Political
Thank you Andreas for your comments. It’s not surprising to anyone with ME, that just sitting at a computer writing emails can cause a crash. That’s what I did yesterday – crash. But, I wanted to get back to you, Andreas, and say thanks for your comments.
Let’s hope the new CIHR policy on ME will eliminate the possibility of the stupidity around GET and CBT as “treatments” for ME. This last February I received a letter from Health Minister Philpott that promoted what my government had done for ME, including the purchase of the 2015 Cochrane review on GET. That was appalling! After much info and protests from many, the subject of GET for ME has not reared its ugly head again. So, it seems there is progress at least on the subject of GET for ME. Well…I REALLY hope so!
I’m glad the topic of the insurance industry has come up. We do need more focus and investigation on this area. There is info out there, but it’s somewhat scattered. “Follow the money”, as Valerie Elliott Smith says. Track down who benefits if persons with ME are dismissed, and neglected. Dr. Tuller has a good article about this issue:
http://www.virology.ws/2015/11/17/trial-by-error-continued-pace-teams-work-for-insurance-companies-not-related-to-pace-really/
There is also info on the British ME websites, and the National ME/FM Action Network’ s older newsletters had articles about the insurance industry.
Jennie, I emailed Francis Collins and Walter Koroshetz (koroshetzw@ninds.nih.gov) on December 21st. I received a “Read Receipt” from Collins, and this from Dr. Koroshetz late that same day: ‘Thanks Cindy. Just trying to get the finishing touches done. Lots of people here have been giving lots of input. Walter. ” I would copy and paste this, but Dr. Koroshetz’s email address doesn’t show up on your blog, so I can’t provide corroboration it’s from him. As well, my email address does show up, and I don’t want that. At any rate, that’s the message I received from NIH. Did anyone else hear anything?
Cindy – yours is the first reply I’ve heard from Dr. Koroshetz. But it does mesh with information that SMCI received from Dr. Vicky Whittemore. Thanks for sharing here!
Cindy
Sorry to hear you crashed.
I did not know about the PACE link with Swiss Re. That is scary and clearly driven by quarterly returns. Obviously if it makes people worse in the long run it is not in the insurance company’s long term interest to promote GET. Unfortunately they see it as a way of avoiding claims in the short time. I had to fight hard to get my LTD and assume that the fight will continue to keep it.
I wonder what Sun Life and Manulife are trying to do with the PACE trial behind closed doors. Makes you think the PACE trial was just like big tobacco sponsored research of prior decades.
Certainly the large number of papers published over the past two years, that clearly demonstrate the biological nature of the condition, will let us fight bullshit with facts. But I am sure it will take more court cases to reign in the Insurance Industry.
Truly if they were thinking long term they would want to spend money on research as their number of claims must be increasing.
Sorry to hear about the appalling reply from Philpott. Did/do you have a coordinated approach to contacting her? If so I’d like get involved. It would be nice to know how she it planning to undo the damage of PACE. I hope she is planning some kind of recall action.
For now I hope that active rest lets you recover from your crash quickly. Have a restful x-mass.
Andreas
Hi Andreas,
Thank you very much for offering to address the “appalling letter” from Minister Philpott. Your input would be helpful.
Regarding this February 13, 2016 letter from Health Minister Jane Philpott, which I assume was mostly informed by staff at CIHR: I understand some, if not many received a very similar letter after the first Millions Missing virtual march on Ottawa MPs this last May. Perhaps you received a copy?
I received two very similar copies from other government MPs in May, however these letters did not include the following paragraph which was initially included in the February letter: “Additionally, the CIHR provided support for five systematic reviews on ME/CFS through the Cochrane Library. One of these reviews, entitled “Exercise therapy for chronic fatigue syndrome ( individual patient data),” is available at http://www.onlinelibrary.wiley.com/doi/10.1002/14651858.CD011040/full. I have attached copies of the other four systematic reviews for your reference.”
There were actually 4 reviews in total, not five. These were on CFS and: CBT, and Chinese Medicine. And, Epstein Barr Virus, if I recall correctly. Needless to say, especially the government support for the GET review was appalling.
Another paragraph in the letter I think others also received said: ” The Government of Canada, through the Canadian Institutes of Health Research (CIHR), contributes to the research agenda for conditions with few, if any, evidence-based informed treatments, such as ME/CFS. Between 2000-2001 and 2014-2015, the CIHR invested $1.45 million in research related to ME/CFS, including $335,000 in this area between 2010-2011 and 2014-2015 alone.”
If one knows there are over 400,000 Canadians with ME, then it’s easy to figure out that over a 15 year period, CIHR had spent mere pennies/year on each ME patient’s very debilitating illness. Another appalling fact!
The letter also talks about the CIHR’s Institute of Musculoskeletal Health and Arthritis (IMHA) “supporting the creation of a national network for translational research in ME/CFS in 2016-2017.” This was the biomedical grant application that was denied in August. I think this paragraph was also included in letters others around the country received following the May virtual protest.
At the time, I wrote to Minister Philpott, about this letter. And, the National ME/FM Action Network had a meeting with one of the the Health Minister’s policy advisers, Dr. Jesse Kancir, regarding this letter, and other issues. As well, when energy allowed, I sent Minister Philpott’s letter out to ME groups in some provinces, and phoned some groups for them to do their own follow up if desired. I also wrote to other Ministers, and the House of Commons Health Committee about this concern. And, please pardon my memory, if I’m not mistaken, I recall posting some or all of this letter on line with MEAction, for others to contact her. (I had trouble directly copying and pasting Minister Philpott’s letter online. Perhaps that’s a security thing – you can’t just copy and paste a Minister’s letter.)
To answer your question, this was a small coordinated approach, done prior to the establishment of Millions Missing Canada. With more person power, as we have with Millions Missing, perhaps we could have done more. I don’t know.
I did not get any answer from the government about whether they are going to implement GET for ME. Perhaps we do need to re-address this issue, and make sure it’s pounded flat. I am hoping that with the new CIHR statement in support of the biological basis of ME, GET for ME won’t be supported again.
But, then who will be making up the grant application review committees from now on? The National ME/FM Action Network has put the request out for the community to forward names of qualified researchers to them, in order that they can pass them along to CIHR. This was a request CIHR made of the National ME/FM Action Network.
If anyone wants to write to Health Minister Jane Philpott her email addresses are: Jane.Philpott.A1@parl.gc.ca; jane.philpott@canada.ca
Cheers, and Happy New Year!
i just got this frm koroshetz:
Thanks Julia. We are just putting finishing touches on the funding announcements.
Walter
seems to be from him.
Yes, several people have heard from Koroshetz. No one has heard from Collins to my knowledge.
Email and phone call to Collins = DONE!
Thanks for all your work on this incredibly frustrating project, Jennie! I’m doing advocacy behind the scenes and your numbers have been a big assistance. And huge motivation for me because my emotional composition is quite similar to yours! When I get pissed, I have to convert it into advocacy until I’m flat out.
Let’s hope 2017 is less of a s***-storm. Onward and upward!
I hope everyone stocked up on extra supplies of patience because we have more waiting to do on the FOA’s
The Trans-NIH ME/cfs Working Group sent out a link to this announcement:
“December 30, 2016
Update on Funding Opportunity Announcement for ME/CFS Research Consortium
On October 21, 2016, NIH announced its intent to publish a major funding opportunity for a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome research consortium: https://grants.nih.gov/grants/guide/notice-files/NOT-NS-17-004.html. The early notice has allowed researchers to develop initial plans and collaborations to maximize their chances of competing successfully for the forthcoming funding opportunities. NIH had planned to release the solicitation for grants by the end of December 2016. However, due to a high level of interest from multiple NIH Institutes and Centers, several rounds of revisions were required, and a number of finishing touches are necessary to optimize the funding announcements. NIH expects the FOAs will be released by the end of January 2017. Importantly, this change does not affect the start date of the actual research, which remains scheduled to proceed this fall after approval by the NIH Councils.
NIH remains committed to advancing the understanding of the biological basis of ME/CFS and developing treatments that will reduce the burden of illness due to ME/CFS. We believe that establishing a consortium of researchers working together will be a significant step forward in achieving this mission.
This page last reviewed on December 30, 2016″
https://www.nih.gov/research-training/medical-research-initiatives/mecfs/update-funding-opportunity-announcement-me-cfs-research-consortium