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HHS Secretary Kills CFSAC!

If you were on the CFSAC committee, you awoke to the following email in your inbox yesterday morning:

Good morning,

I’d like to personally extend my gratitude to you for serving as a member of the Chronic Fatigue Syndrome Advisory Committee (CFSAC).Your input as a subject matter expert in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has proven to be invaluable to the Department of Health and Human Services (HHS). The Secretary has decided not to renew the Charter after its expiration date of September 5, 2018. As you know, CFSAC was established in 2002 and during its 16-year tenure, it advised various HHS Secretaries on issues related to ME/CFS. The Committee was sunset effective September 5, 2018, at 11:59 p.m. Although the CFSAC Charter was not renewed, HHS remains committed to advancing research and programs on ME/CFS and providing resources to help individuals who are suffering from this complex and debilitating disease.

CDR Gustavo Ceinos, MPH

Designated Federal Officer

That means the committee was dissolved summarily and without notice as of first thing yesterday morning, September 6.  There was no warning.

The Chronic Fatigue Syndrome Advisory Committee, or CFSAC, held its first meeting in 2003.  The committee was formed to provide advice and recommendations to the US Secretary of Health and Human Services on issues related to Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS).  These issues were broad-ranging, including access and care for those with ME, the science of ME, and broader public health, clinical, research, and educational issues related to the disease. Its meetings were open to the public.

This meant that anyone from the community could call in and bring up issues relevant to the disease.  The meetings’ minutes, public and written testimonies, and many speakers’ presentations were made available online at the CFSAC website. #MEAction, Solve ME/CFS, IACFS/ME, Simmaron, and many other patient organizations and entities had presence over the life of the committee, as well as dozens of independent advocates.  Clinicians, researchers, patients, and caregivers were all active participants. CFSAC also represented one of the only places where multiple agencies could coordinate an action, allowing advocates and ex-officios to combine forces and share information about projects.

Government officials have often referred advocates to CFSAC meetings to air grievances and discuss potential solutions.  Walter Koroshetz of NINDS referenced CFSAC in his response to the letter #MEAction sent to Francis Collins as an important resource for patients.  

This injudicious dismissal of one of the longest-running public meetings between patients and their government isn’t just worrying — it’s an insult.  It shows a breathtaking degree of disrespect, and a lack of understanding of what patients and stakeholders have sacrificed and contributed over the years. Though CFSAC was problematic and far from perfect, it presented an opportunity for powerful advocates to do good work.  There were many active subcommittees within CFSAC, including one on medical education, one fighting for Project ECHO funding, and one group working towards FDA approval of medications for ME. It is unclear what will happen to these projects.

If the intention was to replace CFSAC with some other entity, there is a right and a wrong way to propose such a shift.  The right way would have required stakeholder engagement over a period of at least a few months to ensure that whatever was created next was in the best interests of patients.  As a tool of engagement, CFSAC was far from perfect — but going from an imperfect solution to none at all is a huge step backward.

We should not have to justify that we deserve the space to speak to our government’s officials.

HHS has shown disrespect and a profound lack of professionalism with those who have been their colleagues, ‘firing’ them by email.  #MEAction must convey our profound disappointment that HHS continues to show such disdain for the more than a million American citizens with ME.  

What we’re fighting for is nothing less than our voice as a community — our lives as a community — and we refuse to be erased.

TAKE ACTION NOW.  Tell HHS we will be heard!

We will come together to show HHS that we cannot be silenced. 

We are planning to virtually protest the U.S. Department of Health and Human Service on Friday, Sept. 14th. We have canceled the in-person protest in Washington, D.C. due to the fact that a hurricane is headed for that area on Thursday, and will reschedule at a later date. Our virtual protest on Friday will show HHS that we are not going away, and that the pressure is on!    Click on the button for full details. 

Join the Protest!


Categories: All News, Featured news, HHS, United States

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7 comments on “HHS Secretary Kills CFSAC!
  1. Darla N. says:

    This is terrible news. Talking to my Representative and Senators in DC about ME has been like talking to a wall, but at least with CFSAC meetings, government officials were listening and there was some two-way communication. That this was the only such committee that was disbanded is highly suspicious. I wouldn’t wish this disease on anyone, but I’m afraid the only way to make headway with the HHS is to wait for one of its members to develop ME and become unable to work. I hope the protest and the continued work of #MEAction prove me wrong.

    1. Jaime S says:

      I hope so too, Darla!

  2. Amy says:

    Yet one more thing the powers that be have done to undermine the ME community. This type of thing has been going on for decades, and all highly suspicious. I personally believe these people know exactly what they’re doing; that ME is a real disease, aware of its true effects, and that it is, in fact, physiological in origin. These people stop at nothing to convince society that our sickness is merely a choice, and are willing to sink to any new low to do it. I’ve had my suspicions before, but this one takes the cake!!!

    1. Jaime S says:

      Normally I feel more circumspect, and believe that people are mostly lazy and greedy when they make decisions that harm others.

      Yet CFSAC required very little input from HHS, and our best estimates show the budget — including staff time! — to be less than 200K. Moreover, we appear to be the *only *committee shut down. If this were a cost-saving measure, you’d expect to see others disappear.

      This makes it hard to make a case that the motives were along the lines of time or money, and it begins to look more like dismissiveness and stigma at work: the idea that we’ve had plenty of our health care system’s time and energy and *deserve* no more of it.

      The brusque little email that was sent is damningly dismissive, and the reply to Jennie’s article — that CFSAC was disbanded because it *accomplished its mission* — is beyond the pale.

      Time to fight.

      1. Alanamous says:

        I cannot say that I have been following in-depth in all that has been going on or know the ins and outs of all dealings with the HHS or their interactions with other committees. However, I have seen enough which is in signifigant distaste in the way #MEACTION has been attacking towards HHS and especially Francis Collins in one instance and then turning around and acting as though they expect to have a professional and copacetic relationship with HHS. That’s NOT the way to treat anyone, individual or congolmerate and then expect to be treated back with respect. Quite frankly, I’m not surprised that “we” as a group have been dismissed because of this adversarial relationship.

        As much as we may be dealing with political issues in association with our lives, it does not mean that we should be behaving like some persons in the political arena do by stooping to unethical practices, mud slinging or any type of baiting schemes which we wouldn’t appreciate being done to ourselves or our own community. We’re not the only people with feelings, who react and who can demand action, or inaction. These are our lives which we are dealing with, we need to remember that we are dealing with humans, we want to be treated like humans and if such a thing is going to persist we MUST STOP THE MUD SLINGING and not allow our anger to be the force which drives us!

        There is mention in the brief articles pertaining to the CFSAC as being less than perfect. Perhaps if we focus on some of these issues, whatever they may be, acknowledge that #MEACTION has been less than honorable and ethical in it’s treatment of the HHS publicly and make an apology, we can move forward with putting out the fire and rebuilding the bridge that appears to be burning.

        I truly hope that #MEACTION can swallow their pride, reign in their anger, and recognize that fighting doesn’t always mean stooping to any tactics just to win. You are supposed to be representing an entire community and it continues to terrify me in the way I and millions of other are being represented to great detriment.

        Please take my words to heart so that we truly can win this awful battle against our illness, NOT AGAINST HUMANS. We need to make friends, not enemies.

        1. Jaime S says:

          Some people are very uncomfortable with peaceful protest as a rule. They feel that if we simply sat down at the table like grown-ups, things would get done. After all, it would be illogical for the government not to help its people, so long as their issues are legitimate and their requests are reasonable. It’s in the government’s best interests to help us: they want more productive citizens, don’t they?

          But — in our current political climate, this should be the *opposite* of a surprise — people don’t always operate in their country’s best interest.

          Advocacy work makes you realize that your government ignores you unless you get *loud*. If you disagree, I strongly encourage you to check out the history of ACTUP New York, which was almost wholly responsible for ensuring that AIDS/HIV went from zero funding to being one of the most well-funded diseases in the US. They weren’t polite and quiet and respectful. They walked around the city with empty coffins, shouting “*you killed us!*”

          They did hunger strikes and in-person protests, while also engaging in ‘inside advocacy’, meeting with governmental officials. Your statement re: how we can run a protest and then expect to meet and collaborate with governmental officials was surprising. Not only are we meeting with government officials as a result of protest, but that is always how it works: you make noise until officials must meet with you. And this is what other underserved diseases have done to bring attention to their cause, including autism and AIDS.

          You may be taken aback by the anger that patients feel towards their government. I was too, when I joined advocacy efforts a few years ago.

          But history in the US between patients with ME and their governments is fraught. The CDC once ‘lost’ 1 million dollars that had been earmarked for CFS, and it went to another disease. This isn’t conspiracy theory; they’ve said themselves that this is the case. (The funding was never returned.) It was the CDC who sent their people to Lake Tahoe, one of the most infamous outbreaks of an infectious agent that led to ME. Their people called it hysteria without examining a single patient. It was the CDC that, up until recently, recommended GET and CBT as therapies. These aren’t ‘historical’ issues: in some cases, we are dealing with the exact same individuals who carried out these harmful actions, today.

          The NIH still funds ME at less than 1/20 the value congruent with disease burden.

          HHS just shut down CFSAC in an incredibly dismissive manner that made patients’ head spin — *and* good people in CDC and NIH who were working with us! Not to mention the way that HHS officials treated patients in CFSAC a few years ago, which is frankly shocking.

          There is a dividing line that I wish more people would see, and I want to thank you for giving me a place to express it: *Those who work at these institutions are people*, many of them *good people*: the CDC and NIH aren’t a hive mind in which everyone believes the same about patients. But the decisions at the top, or the lurching of giant governmental organizations in general, does not tend to be in our favor; and *there are people of genuine ill-will*, who firmly believe our patient group is the ‘undeserving ill’. People who remember the ‘yuppie flu’ of the 1990s and who read pop science articles about ‘CFS’. They have the ability to shift things as well. Things are improving: today may be the best day to have ME in the US since the dawn of time. It’s wonderful to see progress! But having ME still sucks, we’re still underfunded, our illness is still stigmatized, it’s still nearly impossible to get decent medical care, doctors are still uneducated, and we are so far from done!

          And I’m going to throw something else out there, and I really don’t know if it’s possible to take it in at this moment in time. If you can’t listen now, that’s okay, but I hope you consider it later.

          *People are searching — desperately — for a simple & solvable reason patients aren’t making more progress, faster.*

          It’s often just *one* thing they think is the issue. If we could fix *just this one thing*, the government would do their job and support patients.

          But there is no *one thing, *and there is no *simple solution*.

          It will come as no surprise to you that there is a contingent of patients who say that #MEAction isn’t aggressive *enough*. Playing nice hasn’t gotten us anywhere, they say: it’s time to do protests that are more dramatic, hunger strikes… playing nice *hasn’t *gotten us far. To some, *this* is the ‘single obstacle’ that, if overcome, would dramatically accelerate progress.

          But also? Being aggressive hasn’t gotten us far.

          *Nothing has gotten us far, yet — and, as a patient population, we are doing everything we can.*

          We (as a patient population, not #MEAction alone) are trying everything.

          We do inside and outside strategies, which is a way of saying “we protest and shout and get media involved; and also we meet with government officials and discuss the issues of the day”.

          It’s this combo that pushes forward — that *has* pushed us forward over the past three years. In our current context, this combo may be the *only* thing that pushes forward.

          So let’s look at the results of an “inside-only” strategy in the context of ME: having meetings and collaborating with the government towards better treatment for patients.

          Inside-only was the strategy of Action for ME.

          They ended up losing patient support because they wholeheartedly bought into GET and CBT as curative therapies, because they so firmly believed their government wanted to support and cure them rather than simply make them go away. It wasn’t just patient support that they lost. So many patients lost their livelihoods, the little sliver of good health they’d managed to keep for themselves, because Action for ME bought into what the government was selling them. By ‘going along’, they doomed thousands of UK citizens to a life housebound or bedbound when they didn’t have to be.

          Action for ME has since reversed their stance, but not before doing incalculable damage. I hope they start to do some outside advocacy, even if they find it a little uncomfortable; signing letters is not enough.

          Last but not least, I do wish you’d trust the experience of those who made the inside-only attempts in the 1980s, which did not produce lasting results.

          Finally, I speak to CDC and NIH officials all the time, and no individual I speak to believes these efforts are *personal*. They have worked in government for decades, and while they’re human beings with feelings, they’re mature enough to know this isn’t about them. They know we are fighting against *organizations* who we *fund* as citizens, that bear responsibility to us that they have neglected to fulfill.

          While random shouting and rage is not effective, targeted protest is, and in practice has proved to be an important part of how we move the needle.

          And it is at the heart of #MEAction, and all effective advocacy. Beyond ACTUP NY, there are countless other stories: Martin Luther King Jr, for example, led peaceful protests throughout the United States. He also met and spoke with Lyndon B Johnson, though the degree to which they were in collaboration was only well-understood far later. Inside + outside is the way.

          I appreciate your anger and frustration, Alana, and I feel strongly that we should come together as patients wherever our goals align. But I do know that the answer isn’t to retreat to inside strategies only. They have demonstrably been failures in advocacy-oriented efforts in ME, without their companion outside strategies. It may feel uncomfortable to protest, but actions that destroy patient lives call for dramatic action as well as ‘a seat at the table’ and more direct conversation. This isn’t just my feeling: there are case studies that prove this works best in circumstances such as ours, and I believe in evidence.

          More on this:

          A quick rundown of the Inside-Outside strategy and why it works:
          A paper that discusses the nature and value of the inside-outside strategy in different cultural contexts: (Interestingly, it ALSO says that patient groups that have a regular referendum *cough*CFSAC*cough* are more likely to be successful.)
          This paper argues that, the fewer resources a group has, the more likely outside strategies are to be effective: (ME has very few ‘political resources’ right now…)

          Food for thought, Alana, and thank you for letting me know how you feel on this.


  3. Amy says:

    I agree, Jamie. What HHS did was a deliberate slap in the face!

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