How To Protest HHS with #MEAction

We will protest the U.S. Department of Health and Human Service virtually, on social media, 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. We will reschedule the Washington, D.C. protest for a later date. Our virtual protest on Friday, Sept. 14th will show HHS that we are not going away, and that the pressure is on!   
Everyone all over the world is welcomed to join the virtual protest! 

Protest Details

HHS leadership has said that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) has accomplished its duties, and that the committee is no longer needed. This is complete and utter nonsense! We say that HHS has not accomplished its mission! Together, we will send that message to HHS in a worldwide virtual protest this Friday using the hashtag, #MissionNotAccomplishedHHS.
Protest steps:
1. Take a photo of yourself doing one of these actions:
— Hold a sign with the hashtag #MissionNotAccomplishedHHS or use language such as:

“FYI, I’m still sick”
“So much more to do, we need you.”
“HHS has UNFINISHED Business!”
“Far from finished!”

—  Cover your mouth with a bandana to show how HHS has silenced you

— All photos with our previous theme #HearMEnowHHS and “we will be heard” that you have already prepared are also welcomed, and most definitely relevant!
— Your own photo ideas are welcomed, but don’t forget to use the #MissionNotAccomplishedHHS hashtag and handles – see Facebook and Twitter instructions below.
2. Post the photo on social media:
Facebook: Along with your photo and message include the hashtag #MissionNotAccomplishedHHS (see example post).
Twitter: Along with your photo and message include the hashtag #MissionNotAccomplishedHHS. Tag HHS director using the twitter handles: @SecAzar and @HHSGov (see example tweet).
3. Invite your family and friends to participate!  Encourage your family or friends to hold up a sign that says, “We miss playing outside with our mom” or a similar idea. Post on social media using the #MissionNotAccomplishedHHS hashtag and handles – see Facebook and Twitter instructions above.
4. Call on congress to establish a new ME/CFS Federal Advisory Committee – through congressional action – to ensure that our community will be heard! Contact Congress using the one-click, an action organized by Solve ME/CFS Initiative.

Our Demands

We want a meeting with the US Secretary of Health and Human Services, Alex Azar. He needs to hear how harmful this action is to the community. We want a federal advisory committee reinstated with a more robust charter. We demand a proper voice. We will continue meeting with individual agencies like the NIH and the CDC to make ourselves heard.  But Secretary Alex Azar needs to know what we’re fighting for is nothing less than our voice as a community — our lives as a community — and we will not be silenced.

Why we are protesting

The charter for CFSAC, the Chronic Fatigue Syndrome Advisory Committee was dissolved without notice on September 5th by HHS (the U.S. Department of Health and Human Services). This action eliminates the committee that gave patients and activists a platform to provide advice and recommendations to the U.S Secretary of Health and Human Services on issues related to Myalgic Encephalomyelitis (ME). This injudicious dismissal of one of the longest-running public meeting platforms 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.
CFSAC presented the opportunity for clinicians, researchers, patients and caregivers to call in and to represent themselves, point at problems, and suggest solutions.  CFSAC was also 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.
Though CFSAC was problematic and far from perfect, it represented an opportunity for powerful advocates to do good work.  There were many active subcommittees within CFSAC, including one working 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.
The termination of CFSAC comes at a time when we are just beginning to see action on CFSAC recommendations, coordination across agencies and stakeholder involvement in agency actions.  The committee’s dissolution is unacceptable. Read more.
We are losing so much, and we must fight back. If you’ve been waiting and wondering what action should be your first with us, now is the time.  We need all hands on deck!
** This turn around is fast, we know. But we have to show HHS that their actions are unacceptable. We will be updating this document as we learn more.


26 thoughts on “How To Protest HHS with #MEAction”

  1. The global ME community is watching & willing to participate. May the dissolution make way for something better. We with ME will not be silenced!

  2. The announcement that ME is suddenly taken off HHS list of priorities is terrifying.
    Not like anyone’s been cured.
    Not like anyone’s suffering has ended.
    We ME patients are outraged.
    Disgusted with all the false promises.
    Shame on HHS.
    We shall fight on. One day you’ll realize what pain you’ve added to our lives.

    1. Those of us who have been diagnosed with ME, will not silently give up.
      We deserve respect, treatment, and the continuing hope of a cure.
      HHS will not erase us.

  3. Mr Aziz, You should be ashamed of yourself! If your staff advised this action, they should be ashamed! There is still so much to be done regarding this illness and past performance of HHS has been unrewarding to us patients (and those who care about us) until just the last few years. Now when you are really starting to make progress, you disband the Advisory Committee? Its a ridiculous decision! I’m betting you know next to nothing about this illness and the lives of those who suffer with it. I’m betting you made a poorly formed decision. A person in your position should not make such mistakes! I am so disappointed in you and will make my voice heard.

  4. It’s so incredible- they haven’t even really begun to address ME/CFS! Sadly, very sadly, I’ve been sick for over 3 decades and I’m still waiting for them to start. How could they possibly dissolve the Committee? I know I sound like a conspiracy theorist (and feel a bit like one) but I keep coming back to some very powerful forces do not want this illness to be a reality. Starting in the the 1980’s with the outbreak at Incline Village and the CDC’s ‘response.’ Even earlier with the Royal Hospital. (I don’t think I have the right name but…)

  5. It’s just yet another concerted, systematic effort to INVALIDATE the TRUTH of this Darn Disease. In October 2000, in one of my two in-person Testimonies to the then CFSCC at HHS in Washington, I coined the term: “Economic War” being waged on PWC / PFM / PGWS, et al! Then last year, on Conference Call, I stated: “Little did I know that 17 years later, after coining this an “Economic War”, just how much more pervasive it would be!” Not a pin drop could be heard on that call! It was NOT included, of course, int he minutes, but other Advocates on the call heard me loud & clear! This additional stunt is only one more PROOF of this, and the continued systematic INVALIDATION and malfeasance that pervades this, the most dastardly, tragic, scandalous disgrace of our time. Why are we wasting our preciously limited time & energy on REACTING to this, when we should be concentrating on DOING what MUST BE DONE to OUT this travesty? Why are we wasting our preciously limited time & energy on REACTING to this, when we should be concentrating on DOING what MUST BE DONE to OUT this travesty? The CFSCC & CFSAC were only methods of ‘containment’ of our righteous anger. They never really DID anything constructive to truly HELP any of the mult-millions of sufferers, many of them children! They never saved one life! So at what end resurrection? JW Why not instead demand a different venue be created, and run BY PATIENTS FOR PATIENTS, with ‘teeth’ to foment real change among the myriads of corruption?

    1. Wow! Well said. They are indeed working very hard to invalidate this devastating disease. That’s what I have seen for over 30 years and what makes me so outraged.
      “The CFSCC & CFSAC were only methods of ‘containment’ of our righteous anger.”
      Again, wow! Hadn’t thought of it that way but in the end, that seems to be the case. What did they accomplish for us? eg., I put so much time and energy into a written testimony for the recent CFSAC Advisory Committee meeting (or whatever it was called) and it made me feel better-that someone would hear my voice. What a joke. What did all that time and precious energy accomplish? NOTHING! But for a while it contained my anger. It’s all for show, to look like they’re actually doing something. Same for Francis Collins, all talk.
      “Why not instead demand a different venue be created, and run BY PATIENTS FOR PATIENTS, with teeth to foment real change among the myriads of corruption.”
      So true. Nothing will change amidst so much corruption, least not for our benefit. Just more corruption. Thank you Suellen.

    2. Bazia Ann Zebrowski

      Here Here!
      RIP CFSAC!!!
      The first step is leaving the term CFS and/or chronic fatigue syndrome to the history books!
      Let CFS go!!!!
      If people don’t know what we are talking about using ME than that is probably a good thing!
      Allow the community to educate appropriately with the recent science available instead of the misinformation and misleading campaign that has been perpetrated for decades!
      Continually referring to this disease as CFS continues the ability to drag along the historical misinformation and the creates problems because of the lack of specific diagnostic criteria. The ICC may not be perfect but it was created by experts and is more specific for defining the illness. This will create more accurate research, better use of funding and better cooperation in the science and hopefully eventually the government sector.

  6. I think an option should be made for friends and family to support – like a photo of them holding a sign saying We miss ________. Let them see us but let them also see the impact that our being missing has on others too.

  7. Sec Azar, 2.5 million + people in the USA suffer from ME/CFS. We are the voiceless, the ignored, the unseen. We were dancers, artists, poets, scientists, doctors, lawyers, teachers, moms, dads, sisters, brothers and beloved friends. Now most of us are sick, unable to get out of bed, unable to participate in life, unable to get doctors to properly treat us.
    You are responsible for the health and welfare of millions of Americans and we deserve to have access to health care. We deserve a government who does not ignore the pleas of the sick for decades. We did not DESERVE to have the one thing that was helping us have a voice taken from us with no discussion, no warning and no thought. People with ME/CFS are not a bottom line or a budgetary cut. We deserve compassion. We deserve health care. We deserve research. We deserve a government who cares. What happened to you in your life that made you so incredibly CRUEL?

  8. Hi, I signed the petition for legislation and also added a request for a congressional inquiry as follows:
    “Please initiate a congressional inquiry into the manner and reasons for the abrupt cancellation of the HHS advisory committee for ME/CFS, a chronic disease described by medical experts as more disabling than AIDS, cancer, diabetes, rheumatoid arthritis, or MS. Most of the 17 million people with this illness are unable to work and many are young people in their teens and twenties, who will be unable to work for their entire lives based on the current recovery rate of less than 5%. There is NO cure and no approved treatment in the U.S.
    The illness has reached epidemic proportions. Billions of dollars are being lost in terms of American productivity – not to mention the destroyed American lives. Disability payments from an already stressed Social Security system are spiraling. Public health costs are likewise affected.
    As fiscal conservatives, I know you will agree with me that the HHS advisory committee on ME/CFS has NOT achieved its mission as long as the epidemic and its soaring public costs remain unchecked by those officials responsible for public health in the U.S. This advisory committee must be reinstated and given some teeth. Please provide me, by email, a copy of the congressional inquiry or other confirmation that it has been initiated, and the HHS response due date, so that I may follow up. Thank you.”
    I greatly appreciate your many efforts on behalf of all of us and wanted to share with you that while passing legislation is an excellent idea, it is easily placed on a back burner and, even under the best of circumstances, is a lengthy process. In the meantime, as a former federal employee, I can assure you that a “congressional inquiry” gets a lot of attention in federal agencies and like a FOIA request, generally requires an IMMEDIATE response. It’s another tool in our tool kit, if we can persuade our representatives to open such an inquiry. Thank you again for all your hard work.

  9. It was wrong to dissolve the CFS CFSAC committee! We want to get well and contribute to society. This disease is devastating and real! Please help us!

  10. It’s another slap in the face to people who have a peculiar, unusual illness. Please don’t give up on the CFS/ME Community! It’s a very much misunderstood disease.

  11. GIVE ME BACK MY FRIEND. Sec Azar, 2.5 million + people in the USA suffer from ME/CFS. My friend is one of them. Most had careers, families, friends and pets. My friend is one of them. Now most of them are ill, unable to go to work, do chores, enjoy spending time with their families/friends, even get out of bed or stroking their pets. My friend is one of them. Sec Azar, you took away the health and welfare of these people when you abruptly cancelled the HHS advisory committee for ME/CFS – people who deserve to have access to health care the same way millions of other Americans do in your care. My friend is one of them. They deserve a voice where they are listened to. They deserve to be part of the government discussion that decides their future, their health, their welfare They deserve to be well and contribute to society, not to be silenced, dismissed and hidden behind closed doors. Why shut down the CFS CFSAC committee? I have seen this disease at its worst when it struck my friend. It is a very real illness and saddens me to see him go from a energetic, enthusiastic, intelligent, empowering person to someone who is so fatigued that he is unable to do the things he once did, even holding a phone causes him to be so tired that interaction and communication is now minimal. Please help the 2.5 million + people with the resources they need to get well. Give me back my friend.

  12. It would be nice in the future If other options are made available for those of us that do no use social media. In the interests of including as many voices as possible It would be greatly appreciated. Thank you.

  13. SHAME! SHAME! SHAME! Are you really going to leave us behind in the misery of this disease? I used to be a social worker making a difference in the world and advocating for those who could not advocate for themselves. Then, through no fault of my own, this disease (ME) took away everything that matters to me. And who will advocate for me? Letting my life become a “non-priority” is painful and hardly treating thy neighbor as thyself. I would rather be dead than live like this.

    1. Thank you. Your comment really touched my pain and outrage. I’m sorry for all that you’ve lost. I also have had SO much taken away from me by this cruel disease and even crueler response or lack of, by ‘our’ government. I feel like I’ve become an “untouchable” in our society. It’s hard enough-it’s overwhelming just trying to cope with this disease that has devastated me and my life.

  14. Det verkar som att tortyr av oskyldiga är acceptabelt! Det borde gå att stämma staten internationellt för allt lidande!
    Själv så bor jag i Finland och tycks inte kunna få diagnosen och orken att kämpa finns ju inte så man har hamnat i ett moment 22 och orkar inte mer…

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