This is wrong on so many levels – Mary Dimmock, advocate and mother of a severely ill son with ME/CFS
Thanks to advocates Jennie Spotila, Mary Dimmock and others for jumping on this quickly.
The Department of Health and Human Services is all of a sudden in the definition game. The cynical viewpoint would say the DHHS didn’t like the tack CFSAC was taking – emphasizing postexertional malaise and the Canadian Criteria – so they handcuffed them by not allowing them (under the new rules) to produce a recommendation on a definition. That done, they began talks with an independent non-profit group called the Institute of Medicine (IOM) to create the official government definition of ME/CFS.’
The DHHS ignored its federal advisory committee when it set out to create a consensus definition for ME/CFS
No one was apparently alerted; not CFSAC, not the IACFS/ME, not the CFIDS Association, nor any advocacy groups or individuals. The DHHS has decided on their own, without consultation with anyone in the ME/CFS field, to farm out the most contentious and possibly the most important issue in ME/CFS to a non-profit group with no connections to this disorder.
Then, just before Labor Day they announced they intended to enter into a ‘sole source contract’ with the IOM to produce a new ‘consensus’ definition for ME/CFS, and gave anyone else a couple of weeks to apply. I don’t know about you but hearing that the federal government intends to enter into a contract with somebody else wouldn’t inspire me to enter in the bidding process.
A Definition Coup d’etat?
This has all the earmarks of a definition ‘coup d’etat’. First, you administratively kneecap the opposition (CFSAC), then you make deals behind the scenes (IOM) , and then you essentially announce a fait accompli – a contract no one else would ever bid on.
This isn’t the DHHS of Wanda Jones and Dennis Mangan, anymore.
The DHHS gave the responsibility to a non-profit group with no experience in ME/CFS at all. The IOM, not CFSAC, not the IACFS/ME, not even A Wanda Jones or Dennis Mangan who’se trusted on both sides of the aisle, is going to choose the committee members who will create a ‘consensus’ definition for ME/CFS. The IOM is respected but they have no experience in this convoluted, controversial field.
It’s a strange way to create a ‘consensus’ definition, and one might note that attempts to foist non-consensus definitions (ie. the Empirical Definition) on a wary research community failed. It’s possible that the IOM would build a good team and produce a good consensus definition but who would believe that the way this has gone? Plus, their very short track record on definitions is not good.
Only 3 of the 16 Gulf War Definition Committee members picked by the OMI had experience with GWS and none had experience with definitions..
The only other definition the IOM has taken on is on Gulf War Illness. The chairman of the project and former Institute of Medicine President, Dr. Kenneth Shine, said he couldn’t remember the last time the OMI produced a definition. They’re not exactly experts…
Only three of the sixteen panel members had any experience in GWI, and of those, only Suzanne Vernon didn’t have a psychological bias toward it. No definition experts are on the panel and public input has been extremely limited. Jennie Spotila‘s blog noted GWS advocate Anthony Hardee’s dismay
Assigning this vital task, which will influence all future Gulf War health research, to a committee largely without expertise in the illness, and directing them to carry out the task through a literature review, is without precedent.
Shine stated all the committee members without GWI experience were needed in order to have an independent review – and the OMI is noted for its independence – but when was the last time you wanted to put your future in the hands of ‘outside experts’. With this disorders history, that’s not a reassuring tack. (Besides why have an advisory committee if you’re not going to use them?)
If they get it wrong, we are in big trouble. Jennie Spotila
Expect the DHHS to require that every bit of federally funded research to follow the new definition. We’ve never actually had a government sanctioned definition; we’ve had two CDC convened definitions (which few like) but we’ve never had the DHHS itself put its thumbprint on one…This one could really stick.
Here’s what you can do about this.
A Call to Action from Mary Dimmock and Other Advocates
ME Advocacy Action: Urgent
Tell HHS that you oppose the IOM contract – stop the proposed IOM Study!
HHS’s proposal to contract with the IOM to “develop clinical diagnostic criteria for ME/CFS” is extremely dangerous and must be stopped.
If any time is a time for advocacy, it’s now.
Why be concerned with this IOM initiative? The January 2013 IOM report on treatments for Gulf War Illness (GWI) redefined GWI as the non-specific chronic multisymptom illness (CMI) and recommended CBT, exercise and anti-depressants as treatments for severely ill and dying veterans with GWI. In addition, IOM is now conducting a study to “define a consensus case definition for chronic multisymptom illness (CMI) as it pertains to the 1990-91 Gulf War Veteran population.” This effort has come under fire by GWI advocates for failing to include sufficient expertise in Gulf War Illness on its panel.
If the current IOM initiative to define Gulf War Illness is any indication, the “ME/CFS” IOM initiative will use non-ME experts to “define” our disease and will likely result in a definition that is even worse than Fukuda – a vague, non-science based case definition that will set ME science and treatment back for decades.
Additional background for advocates is provided below that gives more information on the dangers of this initiative and on the IOM initiatives on GWI.
Immediate Actions You Can Take to Stop This Contract:
- Send an email every day to HHS voicing your strong opposition to this initiative as soon as possible but no later than by 5pm on Monday, September 9th. The email should go to HHS Secretary Kathleen Sebelius, Assistant Secretary Howard Koh, and the heads of all the CFSAC ex officio agencies. The email addresses are provided below along with detailed instructions and a sample email that you can use if you wish.
- Distribute this action alert to your advocacy networks and your family and friends, and urge them to send an email every day as well.
The above actions are initial steps to send a strong message to HHS that the ME advocacy community opposes this effort. But we will not stop there – more actions are planned, including Congressional intervention. Stay tuned for updates and additional actions you can take. We can and must stop this destructive, anti-scientific initiative!
If you have questions, please contact MEACTNOW@yahoo.com.
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Instructions for Emailing HHS:
- If you are using the sample email provided below, copy the sample email into the body of an email message.
- Add your name to the end of the letter.
- Add the Subject Line “Stop the IOM Contract on “ME/CFS” Clinical Criteria”
- Copy the following addresses into the ‘TO” and “CC” boxes
CC: howard.koh@hhs.gov; txf2@cdc.gov; Tomfrieden@cdc.gov; Marilyn.Tavenner@cms.hhs.gov; margaret.hamburg@fda.hhs.gov; Mary.Wakefield@hrsa.hhs.gov; collinsf@mail.nih.gov; richard.kronick@hhs.gov; MEACTNOW@yahoo.com
The CC includes the following individuals:
- HHS Assistant Secretary Howard Koh
- AHRQ Director Richard Kronick
- CDC Director Thomas Frieden
- CMS Administrator Marilyn Tavenner
- FDA Director Margaret Hamburg
- HRSA Director Mary K. Wakefield
- NIH Director Francis Collins
The Social Security administration is not included because the agency head’s email is not available yet. The email address MEACTNOW@yahoo.com is used to track the numbers of messages sent.
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Sample Email for HHS on the IOM Case Definition Initiative.
To be copied into the body of an email message.
Dear Secretary Sebelius,
I am writing to voice my strong opposition to the HHS proposal to contract with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome.” I am a member of the ME community and have witnessed firsthand the devastation of this disease. I am extremely concerned that this planned IOM initiative will gravely harm ME patients. Note that I am purposely using the term “ME” to distinguish the disease that has affected me from the overly broad “CFS”.
I oppose this proposal for the following reasons:
- Two peer-reviewed consensus case definitions, developed by experts in this disease, already exist – the 2003 Canadian Consensus Criteria (CCC) and the 2011 ME International Consensus Criteria (ME-ICC), which used the CCC as its baseline. The CCC has been used both clinically and in research. Both are accompanied by clinical guidelines for medical practitioners, and are well regarded by patients, ME doctors, and ME researchers. Given that expertly defined and accepted consensus clinical criteria already exist, the proposed IOM contract wastes scarce taxpayer dollars and is unnecessary.
- HHS has inexplicably refused to accept the CCC or the ME-ICC and even questions the hallmark symptoms of ME. Instead, it has promoted an overly broad view of the disease called “CFS”, which does not require the hallmark symptoms. This has confounded ME with depression, deconditioning and non-specific chronic fatigue, has severely impeded research, and is the direct cause of the medical skepticism and inappropriate or harmful treatment recommendations to which patients are subjected.
- IOM has only been involved in one other study to define a disease, the current effort for Gulf War Illness (GWI). Advocates and the Research Advisory Committee for GWI (RAC) have criticized the IOM report that redefined GWI as the overly broad chronic multisymptom illness (CMI). They further criticized the misguided focus on psychiatric issues and the failure to staff the IOM panel with GWI experts. Given this and IOM’s inaccurate characterization of CFS in the January 2013 IOM report on treatments for Gulf War Illness patients, we have no confidence that IOM is capable of producing a clinical consensus criteria that defines ME as described by CCC, ME-ICC and most importantly, the patients themselves.
- Ironically, the claimed intent of the HHS-IOM initiative is to develop a consensus definition but this effort has been progressed in secret, apparently for many months and without consultation with key ME stakeholders. The timing of the announcement before a holiday weekend and the short response time indicate that HHS was not looking for input from the ME experts and ME community.
- This IOM initiative does not reflect the October 2012 CFSAC recommendation on the development of a case definition for this disease and in fact is in direct contradiction to that recommendation. CFSAC recommended that a clinical and research case definition be developed in unison, that the effort begin with the Canadian Consensus Criteria and, most importantly, that it be developed by disease experts only.
I strongly urge HHS to abandon its plan for this ill-advised, wasteful, and unscientific initiative.
Sincerely,
<Name>
Health Rising yet again helps to organise patients to essentially ‘mail bomb’ government health officials again. Was it helpful last time? This surely gives all the wrong impressions of the CFS patient community and I’m not very confident it will the the effect you’re intending.
The issue this article raises, certainly needs addressing that’s for sure, and I’m clean out of suggestions, but really doubt this tact is a good one.
While they’re not pretty they’ve actually been very effective and govt officials do notice and do respond to these campaigns; they’ve met with advocates and changed their actions because of them. They show this community is engaged and cares and that makes a difference.
If you can think of a more effective way to do this, I and others are all ears. Street protests aren’t much of a possibility, letter writing campaigns are slow and get alot less response….We all want our advocacy to be effective. Ideas are welcome. 🙂
I agree with Troy. I think trying to bombard the same agency that committed the crime is going to be futile. I think we need to go at this at a Congressional level by organizing people at each state to write their representative and describe the “crime” and ask that the actual government agency responsible for such definitions do their job and not farm it out to some non qualified agency.
Lets organize a National campaign instead where each of us writes a letter, email to our Senators and Congresspersons!
Greg
Until we have a National Campaign up and coordinated – which I think is a great idea, by the way – I propose that we let the people directly in charge know how we feel.
Cort,
I appreciate your bringing this to our attention, as with everything you do for CFS/ME. I do though, agree with Greg that contacting our local representatives may be more advantageous.
With my own issues to receive SSD, it was suggested by my attorney that I contact my local representatives since it’s been nearly impossible to be assigned a court date. Well, I did just that, and Congresswoman Julia Brownley from the 26th District of California and her office have really been on top of things. They have contacted the courts and my case has been flagged and although I’m still looking at another few months to wait, this wouldn’t have happened without Congresswoman Brownley’s office helping me. Her office continues to contact me regularly by phone with updates.
I am more than happy to send her this pre-written email as she has actually demonstrated to me that she cares about her constituents.
Thanks, Sharon
Congratulations on your success Sharon and I hope others benefit from it and have same results from their representatives. Thanks for sending the email to your congresswoman. 🙂
I copied and sent the letter.
A strong email campaign can get noticed. And, it should national outreach to our legislators as well as HHS.
We can use email as a tool to build awareness and change things! Let’s to do it! As individuals we do not have the money or “spoons of energy and time” to advocate for ourselves in traditional way.
But, everyone following Health Rising has access to an electronic device.
Two ideas:
– If anyone has a resource for posting our to find our senators/representatives email addresses, I hope that Health Rising would allow that information to be shared so it can be easily used — just as it was for HHS.
— We could also start a petition on the White House website that is designed for advocating issues. I will find the link.
Thank you for bringing attention to potentially damaging decisions made by any group charged with policies concerning ME/CFS.
Kym
As a Canadian, I feel a bit outside this mess, though its results will have major impact up here; feels a bit as if there is a deliberate snub in bypassing both the CConcensus and the International Concensus, both originating in Canada. And just as the new clinic in Vancouver is struggling to get off the ground.
it might be worth remembering that Obama passed a request a while back that action be taken on this disease, and it is a pity that he is understandably preoccupied with other issues at the moment. It might however be worth reminding his staff of his declared interest in this disease, and of the way in which that seems almost deliberately to have been snubbed by the top officials involved, and at a time opportune for their plans, whatever they really are. It does sound like very bad news indeed, and thanks Cort for bringing it to our attention.
Chris Heppner
And also contacting the media? I’m not sure how you go about it though
OpenSecrets.org has names, addresses, email, and website information on all national congressmen
I copy and pasted the letter and added my personal thoughts also. With my health all I can do is copy and paste. I also always attach a picture of myself so they have a face with the letter. Reading about this today really bummed me out. I had such hope that in the next year we would be hearing some news about some kind of medical help for us. But now with our government going behind our backs I feel sick. One step forward ten steps back. I’m 44 this year at this rate maybe there isn’t any hope on the horizon.
Oh well, i’m going to go eat cookies.
This is extremely important, and whatever means we have to voice our opinions as patients of ME/CFS is better than nothing. Every country is affected by this and everyone needs to speak up. We are being blind-sided once again. (Thank you, Mr Koh – nice listening.) I am so mad right now I have flames coming out of my ears and for a gentle person, that is something to see.
Speak up, people.
What really gets me is that after all the words and all the concern that the patients voices be heard the DHHS undertakes this major initiative on this very important subject without a word to anyone. It’s like THEY KNOW BETTER…That’s one message you could get from all this; the DHHS knows better than the ME/CFS experts on their CFSAC panel and other ME/CFS professionals. I don’t know if that’s how they actually feel but that’s a message you could draw…and that doesn’t help.
I cannot fathom a consensus definition that does not heavily involve ME/CFS experts, in particular, Lenny Jason. If this definition follows that of the GWS it will primarily involve outside experts.
I do appreciate that that the DHHS is moving forward on the definition. The CFSAC listserv sent out a communication not 10 minutes after the blog was published which states that the NIH will be convening an Evidence Based Methodology Workshop regarding a research case definition, and is’ pursuing options for a separate effort for a clinical case definition” The IOM is developing the clinical case definition.
So now, after Jennie’s two blogs on the IOM go out, and as advocates start the spread the word about this project, CFSAC decides to inform the ME/CFS community. You just have to shake your head at their ineptness at public relations. They know the history between the federal govt, and ME/CFS and yet they act in a way that’s guaranteed to sow mistrust. According to one advocate CFSAC was not allowed to form a committee on the definition, and therefore cannot make recommendations on that subject to the DHHS any more. That sure looks like they wanted a pesky CFSAC committee out of the way.
It’s a very different environment from when Wanda Jones and Dennis Mangan were there. They went out of their way to bring the ME/CFS community in and it worked! I remember Dennis Mangan gathering everyone around him on his first CFSAC meeting and patiently just listening to people talk. That worked for the ME/CFS community and worked for Dennis as well. Even though he’s retired he’s STILL ENGAGED…
The other thing is that I think Lenny Jason is actually pretty darn close to being able to produce a data-based definition. I imagine that this project – which is surely going to be year long plus process including a dozen or more professionals is going to cost a bundle. I’d much rather have Lenny use that to produce a data driven definition that pharma and the research world can trust. Lenny doesn’t believe we need any more ‘consensus’ definitions; in this data driven age they’re obsolete – we need a data driven one.
Embarking on a project to produce that would have been great.
This is totally outrageous! Thanks for writing about this. I have a suggestion–the letter that you have thoughtfully provided for us to copy is a real pain to cut and paste. The TO and CC addresses include extraneous text that needs to be deleted before sending, and the letter itself loses its bullet points and turns into one big paragraph when pasted. Is there a way to format this to make it easier? I spent a lot of time fixing these bugs before sending the e-mail.
Thanks!
I copied and sent the letter and sent the instructions to friends. I had a problem, I could not send it until I took Howard Koh out. I tried to sent it to him alone, would not work. I liked what Howard Koh had to say when I watched one of the meetings.
We will not give up we are known now!
Kym, others, would a petition on Change.org, MoveOn.org, or other(s) be helpful ??
I am sending an email to them right now, thanks for the template and addresses, etc. It saves me time & energy.
This is so wrong. I am tired of the ‘regulars’ deciding what’s best for our lives from their perspective which is not based on experience with the illness and may come from also having little education or knowledge relating to it.
Laura
LET US DISCUSS WHAT IS REALITY HERE: THAT ME/CFS (symptoms, diagnosis, treatment protocols) IS NOT BEING TAUGHT AT ANY MEDICAL UNIVERSITY HERE.
WHY IS THAT??? Without a proper definition, there are no treatment protocols in place, a “must” for any disorder. Lacking any “protocols” (which is what every MD uses to treat patients), that furthers the case that patients will not receive any diagnostic tests or supportive treatment. Neither will they be able to build a case for Social Security Disability. I recently spoke with both a Junior and Senior Medical student at Medical College of Georgia and neither had EVER heard of ME/CFS whatsoever. As well, we must realize that no specialty has been assigned CFS/ME to be under the scope of their practice.
I spoke to Dr. Elizabeth Unger at the CDC who oversees the vast arena of chronic illnesses under which CFS/ME has been placed (which includes heart disease, asthma, diabetes, arthritis, and much more by the way). She informed me that the CDC is in charge of developing the information that will be taught. Once that task is completed, it must then be submitted to the American Association of Medical Universities for approval. C.E.U.’s are already available for practicing MD’s at the CDC website.
UNTIL THERE IS A DEFINITION IN PLACE, IT WILL NOT BE TAUGHT IN MEDICAL SCHOOLS. UNTIL ME/CFS IS DEFINED, NO PROTOCOLS CAN BE IN PLACE.
The assignment of the HHS-IOM is to define CFS/ME based on a review of all available published research. What is so wrong with that? Do you really think that “they” should listen to our subjective list of whining symptoms which, as we all know, vary highly from person to person??? As a professional, I know which of the two I would choose. I liked Wanda Jones and Dennis Mangen, too, but what did the CFSAC ever accomplish? What I immediately took note of in The Primer for Primary Care Practitioners was all the research findings that had been left out. It was never distributed to MD’s.
Maybe it is time to let HHS handle it and at least we will have a working definition; one based on the confusion of information currently available in the research; hopefully one that will make allowances for the unknown aspects, all the subsets that are being uncovered. What will blocking the IOM accomplish? In my view, it will only extend the holding pattern we have been in for years now. Please, let someone with the authority of the Federal government and HHS define CFS/ME because, unless I’m missing something, our personal desires and egos and demand for subjective input has led us…. where? I’m tired. Sick and tired. Continue making the research information available, please. And let the IOM do the task they’ve been assigned. Let us move forward. Marcie Myers
I think Marcie has made a good point. While I agree that the sudden award has caught the ME/CFS community unprepared for this step, there is no reason to automatically conclude that this will be a disaster for the community. A truly unbiased third party consensus process that included representation from all stakeholder groups could benefit the ME/CFS community.
Rather than pressure the HHS to stop the process, I think we should be sending emails asking them to clarify to the community what they are intending to do with this award.
For example, will the consensus process include inputs from the established ME/CFS advocacy community, including CFSAC? Will the consensus process include participation from respected ME/CFS researchers and treating physicians, the people in the trenches who know the needs of the patients? Or do they plan to hire random medical staff who generally will say whatever the HHS wants to hear? And what DOES the HHS want to hear? Are they looking for a pathway to increase research funding for ME/CFS? Or are they looking for ways to cut costs? Or are they honestly open to whatever the process produces? These points matter.
Properly constructed, an external consensus process could be helpful to the patients in the long run. And this could be the first step in a more fair, formal acknowledgement of ME/CFS by the medical community.
Unfortunatrly, the Gulf War definition proceeding provided very limited public input- I think four or five advocates testified, there was no input into the composition of the committee that I’m aware of, and except for short reports the consensus definition is being prepared under wraps. From what I’ve read there was no solicitation from doctors experienced in field.
Once the IOM has it it appears that it’s their baby. They do have distinguished researchers on the panel but only 3 with experience in GWI and two had a psychological bias that advocates state has long been discredited.
While a consensus definition from a group like IOM might be helpful for pharma and research groups, I think a data driven would be best and I hope they work towards that…
As noted, the IOM recently took a stab at doing this with GWI and proceeded to come up with a definition that reflected “half the diseases known to man”. I struggle to find how this is progress. Do you really expect something different? If so, I have some nice land for you in Florida. And maybe a bridge to go along with it.
For most people in the short term/medium term, progress will be to be diagnosed with another disease that is clearly defined and where treatments exist.
The government’s clear position is that “ME/CFS” is a waste bin for undiagnosed patients. The IOM report will be the final nail in that coffin.
Click on the following sites to find contact information for your individual senators and representative:
http://www.senate.gov
http://www.house.gov
Follow the instructions on the house site by inserting your zip code to find your representative. Put in your state on the senate site to find contact information for your senators.
To create a Petition (preferably only one petition should be started so more signatures can be gathered in one location instead of numerous petitions competing for signatures), go to https://petitions.whitehouse.gov/petition/create and follow the instructions.
Cort, can you work on making this more copy paste friendly? I found it almost too much to copy and paste and figure out how to get the website links off. For instance, when I copy the “subject” of the email, I get a huge long thing that includes links. I think we will lose a lot of patients like me who don’t have enough concentration to figure it out. Thanks!
How did you manage to copy and paste it? I’ve tried everything I can think of, and am getting nowhere 🙁
Actually, if you go to Jenny Spotila’s blog, block-copying from there works very well.
http://www.occupycfs.com/2013/09/04/simple-action/
How did you manage to copy and paste it? I’m getting nowhere.
Thanks for letting me know what happened. We need to figure out how make it easier to post!
Thanks for the sample letter, Cort. I didn’t have any trouble copying and pasting any of it. This is outrageous but not that surprising. Its all too cloak and dagger to be on the up and up. I have little hope that we can stop this but I agree that we must try.
There is a paradigm in medical matters that most unconsciously follow: there needs to be a diagnostic test (which implies a test procedure or testing machine), there needs to be a clear treatment (preferably some combination of surgery, pharmaceuticals or definitive long-term management), and there can’t be ambiguity.
ME (I refuse to use “CFS”; whomever used that name first forced everyone with this disease to push the “you’re a lazy bugger” rock endlessly uphill) is a lot like conditions geriatricists see: combinations of symptoms and diseases. They get around that definition issue by treating the combinations as parts. Breaking ME into a cluster of simpler items would be one way (probably not a good one) to “fit” what exists.
The other is to help them change the paradigm. What’s common to this disease regardless of how you get it or how it manifests? What’s common progression tracks? Can you, in other words, shape the discussion so that the definition emerges with a useful and helpful core?
Out of this we may get one of the first protocols for teaching, researching, and treating a complex symptomology.
Finally, hearings are inevitably not where the action is. Decisions are usually made out of sight. That’s why entering the discussion at the paradigm level opens more doors, with universities, with pharmas, and with ultimately the public agencies.
That letter and information is outstanding. I urge everyone to focus on this and to make the effort to expose and block this move by HHS. Ever increasingly we have medicine and research dictated by insurance companies–and govt has become an insurance company too. They are interested in minimizing long term obligations for chronic conditions whenever they can–to veterans, to ME/CFS patients, etc.–and are pursuing underhanded tactics, false or misleading information, to do so. The betrayal of medicine is a bigger story going on now, than only our part of it, but betrayal it is–for money basically. So that the people with power can leverage more, make more, spend less–and it is all being done under the appearance of both better care for patients and greater efficiency, etc. So much propaganda. Doctors and nurses are being betrayed in these trends, and patients are even more so. We need to become an activist community, to defend and promote our interests, or we will fall under the wheels of this–and it ain’t progress!
Thanks for boosting the signal on this, Cort. I am not generally a fan of email blast campaigns but this situation is different.
The contract can be awarded to IOM after September 11th. That means we have ONE WEEK to make our voices heard at HHS to try and slow this down. I’m not opposed to IOM completely – but the way this has been handled indicates (in my opinion) a deliberate attempt to keep the experts out of it. If we can be heard at HHS, then maybe MAYBE we can get them to slow down and consult the experts.
We have nothing to lose. Worst case scenario is they do it the way they want to anyway.
Thanks to Jennie for 9a) noticing the announcement when no one else did and (b) writing blogs about it dating back from last week…
(It was not, I guess, sent out through the Listserv which was designed to keep everyone informed of what’s going at the DHHS. I didn’t get notice of it but I’m having trouble finding my listserv announcements. I just checked and found that the last Listserv notice I got was in 2011 – saying thank you for signing up for Listserv :))
It was Leela Play who was the first to find the contract solicitation announcement, not Jennie. Let’s give credit where credit is due. Jennie knows perfectly well how she found out about this notice.
Great article, Cort.
I urge everyone to email, including those of us outside the US. The definition that ends up being endorsed by the US govt will spread to research all over the world and will influence our treatment whatever country we’re in. Research knows no national boundaries.
I cannot say I am surprised after unprofessional behavior by those on the committee. A changing of the guards has not been pretty. Following is my letter to Sec. Sebelius. And thank you Cort for including email addresses for others.
Dear Secretary Sebelius, please use your power to block the outsourcing of a case definition for chronic fatigue syndrome/myalgic encephalomyelitis.
As an RN, I am perplexed, as a patient, I am outraged. One simple question, “Would our government outsource national intelligence to the CFSAC committee? This makes about as much sense. Those who treat patients, those who have a firm understanding of this disorder are the only ones to do it. Shouldn’t that be the charge of the CFSAC committee, or are we to suspect the drive to find an answer to this disabling disorder, which affects millions of Americans and their families, is being swept under the rug?
I would appreciate a reply in this most important matter.
Sincerely, Celeste Cooper
I am happy to sign a petition and distribute it among my networks.
Does this change in definition affect the already in place insurance that is supposed to cover this malady? Will the insurance now be useless?
Emails sent (with difficulty) –
Does the ME/CFS/FM community have a lobbyist in Washington?
Like it or not, that seems to be the was things get done.
…the way things get done. (Correction)
To my knowledge we don’t. The CAA paid a nice chunk of change for a lobbyist for years but I’m not sure if they have one anymore.
With Obamacare the government will now be responsible for expanded healthcare costs, and they are obviously planning to model CFS treatment on the NHS and other European healthcare providers, because that approach is cost-effective. It does not appear that efficacy of treatment is a concern. There is also the issue of liability: CFS was a viral outbreak that was not contained. If CFS is redefined as somatoform disorder or hysteria then that liability is disappeared. See also Gulf War, Lyme disease, etc. Sorry to be so cynical but at this point there is no incentive for the government to support a definition that will require costly treatments and expose them to criticism for failing to recognize and contain an epidemic. I did send the emails, but feel like it’s like pissing into the wind.
Don’t have time/energy to do a lot but did see an article from Co-cure entitled:
Diagnostic Criteria for ME/CFS
and am wondering if that’s the same issue.
Jennie Spotila’s request to CFSAC – http://www.occupycfs.com/2013/09/03/if-you-want-our-support/
If the CFSAC Support Team is serious about engaging the ME/CFS community as stakeholders in this process, then I suggest you do the following:
Finally, I note that you may have more success in getting support from the patient community if you inform us of significant developments in a timely fashion – not after we discover the information through other means and mount a response.
Sincerely,
Jennifer Spotila
It seems so backward to basically say…we’re planning to award a contract to X but you can apply in the next two weeks if you wish. Isn’t there supposed to be some sort of open bidding process?
What about the cost? The feds are negotiating with IOM – so what are the projected costs of the project?
Good news on Jennie’s blog:
http://www.occupycfs.com/2013/09/04/dont-stop/
As of 11:09 Eastern this morning, the sole source contract notice for the IOM case definition was updated to read:
“Because of all of the concern from the public surrounding this potential sole source requisition, we have decided to discontinue this request.”
I have reached out to multiple sources to confirm whether the contract has been cancelled (or simply suspended), and to determine what happens next. I will keep you posted.
BUT it is very very important that we continue our email action! We need and want a strong, accurate clinical case definition for ME/CFS! This is essential for any of our other efforts to be successful. So tell HHS that we need an case definition process that is inclusive of the ME/CFS experts and stakeholders to solve this problem once and for all.
Please stay tuned for updates as we work with sources and experts to refine our message and find out what HHS plans to do next. I will share updates with you in real time. Keep emailing HHS. YOUR VOICES ARE BEING HEARD. Don’t stop now!!!!
So cool Sasha!
Note that Jenny suggests that we keep emailing and I will.
Congratulations everyone one making your voice heard…it feels good 🙂
Everybody happy???? Get what you wanted??? Grrrr!!!!!! Marcie
One question: NOW WHO ARE YOU WAITING ON TO WRITE A DEFINITION???
Preferably by a group that is not in a smoke filled room populated by insurance companies, psychs, politicians, bureaucrats and other riff raff.
Dear Mr. Floydguy,
You certainly have a lot of opinions, negative and without much foundation. Could you spend a bit more effort on a solution? I’m busy at Medical College of Georgia educating EVERY student and doctor that I encounter. I have placed a grievance with the Director of Quality Assurance and repeatedly email the Head Doc of all the docs. I’m finding out what the CDC is doing re: getting my severely debilitating disease taught in the medical universities. I stand up. I fight. I fall down. Since 1994. Monday I spent at least 30 minutes teaching a Pulmonologist “Fellow” the basics re: CFS/ME. He had presumed that my severe sleep apnea was 100% obstructive since he’d merely glanced at my 2004 study. Me, 117 pounds, he couldn’t even visualize my tonsils. He then took note that I did remain in Stage II sleep 72% of the time, rarely ever reaching REM and then, of course, “waking” up though I’m unaware. I told him that I believe that I stop breathing when I’m awake though unconsciously and he then had to, for the first time, look outside his box, and wonder if brain-induced apnea could happen just as easily while one is presumably not asleep. I’ve figured out how to email each MD and regularly send them articles. Ironically, when I did see the Chief Pulmonologist, she told me that Dr. Alisangco is the CFS expert and I grinned. That’s my Rheumatologist who knew NOTHING of CFS when I met her 6 months ago. I have no idea if all of my emails led to some Big Honch designating her as I’d spoken so highly of her willingness to learn. Or is she talking to her own colleagues about it? I have no idea as of yet BUT I must be making some type of headway. And what are you doing???? Any of you? Mail something to somebody. Make a copy about the recent icHHV6 findings and put it in the mail to someone so they can hold it in their hands and go “Hmmm”. And maybe, just maybe, they’ll hand it to their colleagues. I myself prefer being on the bottom. More comfortable. More satisfaction. Less effort. I set my own standards. Matters not to me if you were to ever know my name. What matters is that I as ONE SINGLE PERSON CAN MAKE A DIFFERENCE. Check it out, people. Hold that thought. Marcie Myers.
And would you please print up that list of inclusive experts and stakeholders so I know who to direct my dissatisfaction toward now? I’m certain that there will be someone that someone won’t like. Do you know who we all have to thank for the recent publicity finally directed toward ME/CFS???? That lady….. you know….. the one scorned…… who thought that XMRV was the source of this disorder. It was her publications and her insolence and her debating and her running herself into the ground and making consequently unwise decisions. She did all that for US. ME. Did anyone ever think to thank her for screwing up badly enough thru sheer exhaustion and determination to help us? What was her name again? Anybody remember? Just as nobody remembers those of us who gave so much in our earlier lives that 20-25 years later we have ceased to exist. WHO is going to see to it that WHAT???? is taught in medical schools? Now that you have successfully excised IOM from the non-plan. Now what is the plan? Go back and say, “Sorry, we didn’t mean it quite that way…. we just wanted to have it our one million to 4 million ways….. could Lenny come play, too? Then we will bombard you with emails saying “YES!”. I am SOOOOOO disgusted. Not one of you leading the turkeys bothered to think this out before you brought the rest of us in. Sound familiar???? No one asked me what I thought….. whine…..
BRUCE STEWART. Did any of you read his comment? Since no one responded whatsoever to his thought-provoking statements. Go back up and read what he said. Then CLICK on his name. Then tell me why he isn’t leading the boots in some fashion based on his credentials alone albeit they are not medical. Guess that would immediately slash him out of any further consideration, eh?
Cort, you are the only soul I know amongst the group. Why hasn’t someone taken me down yet? Mumblings about whether we have a lobbyist…. or not. I normally do my own ME/CFS advocacy thing. Hence why none of you know me.
In having done my own thing, it would appear that I am the only individual acutely aware that our disorder has yet to be taught in medical schools. Doesn’t anyone care about that? Doesn’t anyone care that our illness does not fall under any specialty? That, in fact, there is no one at the bottom end who gives a damn either. Would anyone care to speculate on WHY this is the case? Because I’d sure like to hear an intelligent response from someone out there. Come on, guys! You were up in arms just hours ago! Now what??? Celebrating? Grrrrrrrrr! marcie
Teaching at med schools should be a no-brainer. I agree with that.
Newbie supporters need to be made aware of those already making headway… I know I do.
Cort, I really appreciate hearing your take on this. I had a very bad feeling about it, especially considering what the IOM did with their Gulf War Illness definition, and their contention that loading the panel with non-experts would give it objectivity. (Can you imagine them calling on psychologists and cardiologists rather than oncologists to produce a report on cancer, in order to give it objectivity?) I don’t want a case definition for generic “chronic multisymptom illness.” I want one that includes hallmark symptoms, including post-exertional symptom exacerbation, and evidence-based biomarkers.
The fact that no one in the ME/CFS community seemed to know anything about it didn’t sound good, either. Not to mention the questionable benefit of adding YET ANOTHER case definition into the field, instead of evaluating the existing ones.
Can you say more about the “new rules” under which the CFSAC is not allowed to give a recommendation on a case definition? I’m very uneasy about what’s happening to CFSAC, especially after seeing what happened to the Gulf War Illness advisory panel, just before they formed the IOM panel to create the case definition for it. It really was a coup: they removed members that were critical of the VA’s GWI research efforts, rewrote their charter, and placed them under the VA. http://www.forbes.com/sites/rebeccaruiz/2013/06/21/advocates-fear-va-changes-to-gulf-war-illness-research-panel/
What I was told is that CFSAC recommendations must now originate in a subcommittee and CFSAC asked and was not allowed to form a subcommittee on the definition.
Yes, the Gulf War situation was ugly; they simply seem to have removed people they didn’t like and went on their way…I didn’t know about the charter change and the move.
Something kind of similar happened in ME/CFS around 2000. It was taken out of NIAID – put in the Women’s Research wing of the Office of the Director, its funding was slashed, the four federally funded research centers were dumped, and funding fell to the pits….
I don’t think anyone realized, at the time, that the outcome would be as bad as it was.
I was able to copy each part of the letter into my e-mail letter. Body of text first, then Sebelius’s address, the cc list, and last I finally found the subject line.
I added some of my own words, as to why I am part of this community.
Strange to have sudden movement, suddenly sole sourced.
What is the function of the Institute of Medicine? Is it part of of NIH?
Anyway, not the best way to get a good and effective definition of this disease!
Thanks for the letter to copy. Always easier than compsoing one myself.
Sarah
The IOM is a non-profit that regularly does provide reports to the feds and others. They do have a reputation for being objective; they’re not a bad group at all but a similar process with GWS has raised alot of red flags.
It’s not the IOM that’s the issue, for me; it’s the way this was done – without notice to the ME/CFS community – and the issues raised by the way the GWS definition is being handled. The IOM does good work but they’ve never done this kind of work and if a consensus definition is produced I think ME/CFS experts in collaboration with outside experts in definition work and perhaps other areas should produce it.
A strong core of ME/CFS experts should be part of this. Honestly, if Lenny Jason gives his OK to anything I would just go with that. He’s our resident expert, he’s very objective and I think the best definition would be produced if he was involved in it.
I’m late, but I sent the message to DHHS et. al. I also sent comments to my legislators and senator.
I don’t know what practical steps I can take to “change the paradigm” or “shape the discussion” as Bruce has suggested, especially if the people who are experts in the field and represent us on CFSAC are kept in the dark and are not invited to the table. But, Bruce, if you have practical suggestions for us as individuals, please, do suggest how we might proceed.
I agree with Marcie that what is taught at med schools is of utmost importance. However, I find what IOM has done with GWI chilling: “non-specific chronic multisymptom illness (CMI),” really? And the treatments? CBT, exercise, antidepressants….
I fear that Lolly’s cynicism is warranted. And I SO hope it is not. Otherwise, all of us might as well all move to the UK, where psychologists are miraculously healing anyone with ME who is willing to undergo CBT and GET. You’ve heard of that, right?