CFSAC Comments, Terri Wilder

Editor’s note: Terri Wilder made these remarks at the May 18, 2016 meeting of the CFS Advisory Committee. I’m pleased to publish her complete comments, with her permission. For new readers, ME refers to myalgic encephalomyelitis, a neuroimmune disease. 

Good Afternoon. My name is Terri Wilder and I’m a person living with ME.

I should tell you that I was only diagnosed about ten weeks ago so it feels strange for me to introduce myself to you this way as I typically introduce myself this way:

“Good Afternoon, I’m Terri Wilder and I’m an AIDS Activist and a member of ACT UP/NY.”

Yes, that ACT UP–the AIDS Coalition to Unleash Power. The infamous activist organization that shut down the FDA, demanded that the CDC change the definition of AIDS to include women specific illnesses, and stormed the NIH. If you worked in government for any length of time I’m fairly certain you have heard of ACT UP.

While I have only been diagnosed with ME for ten weeks, I can tell you that it didn’t take me very long to figure out that we are repeating history with ME. I have told multiple people that I’m having déjà vu. You see, I have been working in HIV since 1989.

One of the reasons ACT UP was founded was because health officials, government researchers, medical bureaucrats, medical providers and pharmaceutical company executives believed they were the “AIDS experts” when in fact the experts were the people living with AIDS. The persons with AIDS points-of-view were made invisible and their real-world knowledge about the changes that needed to be made to end the crisis, was ignored.

I need to be honest with you and tell you that people told me that nothing would happen today if I gave public comment. Nothing would change and that the government would continue neglecting people like me with ME as they have for the past 30 years by throwing us a few crumbs.

For the past ten weeks I have had two things on my mind—how long am I going to be able to hold on to my job so I don’t lose my health insurance and how could government institutions like the NIH, CDC, HRSA, and FDA repeat history by doing nothing for the millions of people who have this disease?

If I end up really sick in the next few months or years it will not be because the disease or its complications made me sick.

If I’m getting sicker from anything I will be getting sicker from the sexism and pyschogenic views that are so deeply entrenched in this disease, I’ll be getting sicker from the CDC for pushing unexplained fatigue definitions and putting incorrect information on their website about ME, I’ll be getting sicker from the neglect and disdain that has driven away researchers and pharmaceutical companies that could discover a treatment for my disease, and I’ll be getting sicker from government committees that won’t allow people like me (with ME) to sit at that table and help inform policies and programs that might actually save my life. We have a model allowing people like me at the table—people just refuse to use it. I know this because my friends with HIV have a seat at the table.

So how many people are dead either directly or indirectly from this disease who might be alive today if research had been done to develop drugs for ME?

Would they be here today if the government took this disease more seriously and established ME Center’s of Excellence around the country? Would they be here if the government invested funding to the tune of $250 million vs. 5-7 million? Would they be here if the designated federal official for this advisory committee actually had something in her bio on the website that actually gave me a clue that she actually had some commitment to ME? The name of the disease can’t be found anywhere in her bio.

So—-how many lives?

Someday, this will be over. Remember that. And when that day comes, there will be people alive on this earth who will hear the story that once there was a terrible disease in this country and that a brave group of people stood up and fought and in some cases gave their lives so that other people might live and be free.

I’m having déjà vu……. and I don’t want history to repeat itself.

If you work for HHS, the CDC, NIH, the FDA or any other government agency—– write down my name.

My name is Terri Wilder and I don’t want my tombstone to say I died of government neglect.

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48 Responses to CFSAC Comments, Terri Wilder

  1. Sasha says:

    Fantastic! Thank you, Terri.

  2. Joe Landson says:

    Brilliant testimony; thanks Jennie for posting.

  3. shannah says:

    Powerful testimony Terry! We so need your voice but higher up the ranks where it counts!

    Fantastic – thank you for your presentation!

  4. Kellie Nicholson says:

    Thank you so much!

  5. Autumn says:

    I guess my only question is, did she even know this disease existed before she became ill and if so how seriously did she take it?

    Yea, I thought so.

    We need healthy advocates and that should not include care takers. No one takes ME/CFS patients nor there families seriously.

    • Autumn says:

      sorry – fog – tired

    • Terri says:

      Autumn, I’m not sure I understand what you are implying however I have actually been sick since 1996. I took my health very seriously. I went to multiple medical providers trying to find out what was wrong with me. I was just officially diagnosed with ME a little over 10 weeks ago. I’m grateful I moved to NYC in 2009 otherwise I would be sitting in Georgia sick with no diagnosis.

      • Autumn says:

        Sick since 1996? Bad news. That is nothing compared to many of us and although important to get what you stated on record it will do nothing for another 20 years. Did I write 20? I meant 50.

        Unless healthy advocates (and a whole lot of them as in many thousands if not 10’s of thousands) fight for this disease, nothing any patient or caretaker says will make any difference. Lawyers dealing in human rights within the medical system is also necessary.

        I listened to what you said live and truly appreciate it but what people were trying to tell you is true. It isn’t going to make a difference to the people that hold the keys to funding, the CDC site recommendations, recognition, etc.

        Just friendly advice. If you ever speak again I would focus on one thing, like the CDC “treatment” guidelines on their site or funding or getting a diagnosis and cover that one topic until they squirm. I think they like it when someone speaks and covers it all. Nothing uncovered, nothing to answer for.

        • Jennie Spotila says:

          Autumn, I think you make a good point that healthy advocates are needed. I need to caution you, however, that your frustration at the situation is coming across as criticism of Terri personally. Please take a moment to review the blog comment guidelines. Thanks.

        • Sarah J says:

          How long you’ve been sick (or diagnosed!) has nothing to do with your right to speak or be heard by others.

          Maybe we are so sick of having our illness discounted by others that we find some value in playing in the Sickness Olympics amongst ourselves. While I feel miserably sorry for anyone with ME, I don’t think illness duration gives your commentary additional value or makes your suffering more important than anyone else’s.

          I agree that until we get more healthy allies, the road will be very hard. I don’t agree that there’s no way for patient advocacy to help get them… and it’s a good thing there are people who don’t take the view you express here, that we as patients can do nothing at all to help ourselves, but should rely on others.

          Please don’t take your anger out on those few who are well enough to work to make a difference for us. If you feel you can’t make a difference, stand aside and let people work who are willing to give it a go. Discouraging people who are working with the goal of making your own life better is simply odd.

          I’m generally confused by your comments.

          • Jennie Spotila says:

            Sarah, I’ll extend the request to review my blog comment guidelines to you as well. You make good points, but directing them at Autumn personally is counterproductive. I don’t want a flame war starting up over Autumn’s comments. I have cautioned her/him, and so there is no need for others to pile on.

        • Terri says:

          Autumn–I appreciate your comments but I respectfully disagree.

    • Terri says:

      Autumn, I’m not sure I understand what you are saying however I have actually been sick since 1996. I took my health very seriously. I went to multiple medical providers trying to find out what was wrong with me. I was just officially diagnosed with ME a little over 10 weeks ago. I’m grateful I moved to NYC in 2009 otherwise I would be sitting in Georgia sick with no diagnosis.

  6. Carrie says:


  7. billie moore says:


    That was one of the most powerful CFSAC testimonies I have ever heard. If you or anyone else recorded it, send the audio link so others can hear it who missed it on the CFSAC “show.” Written words don’t do it full justice.

    Jennie, thanks for reporting this.

  8. Russ says:

    Inspired. Thank you Terri and thank you Jennie for posting. I wouldn’t have picked it up otherwise here in Blighty 🙂

  9. janine p says:

    Welcome Terri, I like your spirit and message. Would be nice to have a Q & A session about ACT UP. I want to know things like: How did ACT UP secure healthy advocates? Was ACT UP a US effort or global effort? Do you know of a healthy person with ACT UP experience who can lead a US or global ME ACT UP? Thanks again for your post! How did ACT UP motivate and inspire sick people to volunteer and work toward a unified message? (In today’s world, I observe ME people spending their limited time and energy using social media to write posts; many seem unwilling to simply refocus (time and energy) and contribute to a greater cause. Others are in denial and don’t want to think about the fact that they are sick. And some are well intentioned , but their efforts may be viewed as counterproductive). We are a mixed bag of newbies all the way up to 30 year veterans; we each have our own experiences and thoughts about how to survive this illness.

  10. Welcome, Terri.

    Just out of curiosity – how did you get your diagnosis? I was VERY lucky twenty-seven years ago when an infectious diseases expert told me I had CFS. And I had heard of it enough to know he was handing me a life sentence. Unfortunately, that’s ALL he had to offer me.

    I’ve been crashed ever since – it got a bit better very slowly after the first five years, but has been level for as long as I can remember. I do all the things under MY control, such as pacing and resting; haven’t found anything else particularly useful – even when the local doctors were trying. Now they don’t even seem to try.

    Sorry you have to fight TWO battles.

  11. Deborah Waroff says:

    Welcome Terry! Getting Tony Fauci out of NIH would do a great deal to help. He is the repeated source of interventions to make sure no one does much to help people with M.E .(PWME.) E.g., in 1999 he and Harold Varmus threw M.E. (or cfs as many know it thanks to CDC) out of NIAID and out of NIH; intervention by activists got the women’s office to rescue it from oblivion, which helped it become a woman’s disease. It is believed he has been involved in queering the pitch for PWME since mid-1980s. It goes on and on. We never have the manpower or access to fully document the malfeasance.

    • Terri says:

      Interesting. I would like to hear more about the Fauci story.

      • jimells says:

        “Dr. Anthony Fauci, NIAID Director, met with the Dr. Harold Varmus, Director of NIH, and concluded that CFS was more complex and activities should be relocated from a single NIH institute.” (CFSAC minutes Sept 2003)

        Recently I watched “How to Survive a Plague” on PBS. One scene clearly shows Fauci as a target of the demonstration. My memory is hazy, but I seem to recall he was burned in effigy, heh heh.

  12. Laurie P says:

    Great speech Terri! Thank you. I’m so very sorry that you’re ill with this disease.

    Thank you Jennie for posting this.

    I’m getting sicker today; as I’ve been all month from filling out disability review forms. I’ve been sick for 33 years; bedridden for about the last decade and house confined for the decade before that. I’ve been receiving benefits for about 13 years; after 3 years of being denied and going through appeals and finally to court which greatly harmed me and escalated my disease. In those 13 years, I briefly lost all of my benefits and was made to apply to a different program; one I had been previously told that I didn’t qualify for and hadn’t been allowed to apply to. I was denied because it was determined I wasn’t disabled and then I was put back on the benefits that I had had where I was considered disabled. I lost some benefits it the process that I wasn’t well enough to fight for, but those benefits were reinstated when a new governor was elected. In my 20’s, I had worked on and off. I had been a graduate student in an accredited off-campus program. I had been married. I had owned a house. Now, alone at age 50, I have to fight for benefits to live on less than ½ of the minimum wage for my state and I live in perpetual fear of never knowing what is going to happen.

  13. Sheila says:

    Powerful! Thanks so much for speaking out Terri.

  14. Marilynne R says:

    Wow, Terri! Thank you!

  15. Anonymous says:

    Absolutely brilliant! Reading this gave me full body goosebumps 🙂

    Thank you so so much, Terri Wilder! Very courageous!

  16. Cecelia Blair says:

    Thank you, Terri! I know you have been courageous and on other people’s behalf. Now you have stepped up to the plate here. I am sorry that not all our voices are positive and encouraging as you and all of us deserve. We need to support each other if we hope to make progress. It would also be wonderful if we could get some help from the field of AIDS activists as these folks will understand a lot of our situation.

  17. Nancy Blake says:

    xTerri the most important thing here is your own health. Exertion is toxic and will harm you. Focus on how to do everything in your daily life in as exertion- efficient way as possible, that may help you keep your job.

    and my article ME/CFS: The Polio Connection and the Danger of Exercise, link on my website. You are a great ally, so keep as well as possible. Thanks for joining the ranks!

  18. Simone says:

    Thank you so much for your powerful words, Terri.

  19. Elizabeth says:

    Thanks, Terri. Sorry to hear you are ill but thanks for standing up for us. It is time for ME to stop being ignored.

  20. K says:

    Wow. Thank you for speaking up Terri.
    I had tears in my eyes reading this.

    I am very sorry you have this wretched illness. But very grateful you are bringing your experience and passion to ME advocacy. We need voices like yours.

  21. Betsy says:

    Powerful post, Terry, thanks so much for lending your voice. I’m always amazed at the excellent writers in the CFIDS community.

  22. Shari BB says:

    Very eloquent. Thank you for sharing, Terri.

  23. Adrienne says:

    Powerful words Terri, just remember to look after your own health. Thank you!! I love your last sentence!!!! Maybe it’s something you wouldn’t mind others using??

    My name is xxxxxx and I don’t want my tombstone to say that I died of government neglect.

  24. Melee says:

    God bless Terri Wilder.

  25. Cheryl says:

    “I’m having déjà vu……. and I don’t want history to repeat itself.”
    You’re too late. It’s not even so much that it repeated itself. It was going on at the same time. (Interesting from an epidemiology standpoint. But most like to ignore that. Even a lot of newer patients don’t get that or patients that weren’t in a cluster outbreak.) I’ve been sick 30 yrs. Was living in SF at the time. Some friends thought I must really have AIDS ( I was struck down fast and hard) and were afraid to be around me. But I watched AIDS get political attention in SF and eventually be come a Hollywood favorite cause. While no one wanted anything to do with ME. Not even the AIDS groups back in the day.

    I appreciate your words. They are very well said and obviously well meaning. But they already are old words for me.
    However, I still hope that someone in the gov will hear them in a new way.

  26. honda4fun says:

    Very powerful message. The part that really stuck with me is your last sentence, “My name is Terri Wilder and I don’t want my tombstone to say I died of government neglect.”

    I got ill in 1987 and because my primary care doctor and any other doctor I could ask didn’t believe in CFS, I was stuck for decades. I wasn’t diagnosed until 2012 and at the time, I was as sick as I was at onset (the worst 2 yrs. of my life), and I believe a lot of my downward spiral was from being stuck in the system and being beaten down repeatedly, constantly being told that either I go to work or I’ll get my payments suspended / cancelled. Raising 3 kids on my own and having this monkey on my back while being gravely ill, was not only a big burden, but also was a big contribution to my declining health.

    Once diagnosed, everything changed. After a couple of (expected) appeals, I was on ODSP within a year. Throughout this time, I had no flack whatsoever from the system, but I have to say it was still a big worry until the decision came down (exactly one week before the Tribunal hearing). I honestly don’t know what I would have done if denied. Even with ODSP, life is a big struggle. We could use more research, resources,.. and the powers that be have to be better educated about our illness and it’s long-term effects.

    Many thanks for your courage and I hope someone out there with power is sitting up and taking notice and will come to our aid.

  27. Dr John L Whiting says:

    I wonder how much leverage the CFS Advisory Committee has?

    Secondly, how likely is it that the advice given to the Committee will actually be acted upon?

    Is this a simply a toothless tiger committee whose role is one of listening to public concerns and nothing more?

    To whom does this Advisory Committee answer?

    Otherwise, this recent meeting and the presentations to the committee will all have been in vain. As I don’t know how the American system actually works, these questions may in fact be moot and unnecessary.

    All the same, it’s good to state the obvious as, often the obvious is what is most important, and it is the obvious that is often the most left out.

    I believe that the magnitude of the problem continues to be understated and undervalued.

    It never ceases to amaze me how much an illness as serious as this one continues to be ignored.
    This was a powerful speech and I hope that the Committee did take notice and be moved by it.

    It would be interesting to know what the Committee believes what must or needs to be stated to them in order for more action to occur. What are they looking for to convince them to take serious action?

    It is not as though there is no relevant information available to the Committee to ponder and one wonders why more has not already been done. Why is it that we have to continue to plead our case?

    It is good that a greater number of notable people are coming forward to support those of us whose voices have had less or little impact in the past on those that governor us.

    Perhaps this is the answer but if it is not, then we need to find out why this continues despite relentless entreaties, so that in the future, we can expect meaningful responses from the powers that be.

    Unlike AIDS, ME/CFS is not a clear cut death sentence, nor is it an illness that is obviously communicable to the population at large, and epidemics/outbreaks of the disease are not common enough to create public attention. The status quo is not sufficiently threatened as to make committees such as this understand that those people not yet unaffected, are also at risk of one day having this illness. Consequently, it is not surprisingly that the road ahead for ME/CFS is likely to be even more difficult than it was for AIDS.

    I don’t believe that it is simply a matter of the illness not being taken seriously. I believe there is more to it than this. I believe that the lack of obvious solutions and clear cut paths in research are also significant impediments to progress. Those in charge simply do not yet have the vision and future direction as to how to best solve the problem.

    What is not really appreciated is the full extent of the condition and that it presents in many guises that, to the lay person, do not seem to be inter-related. Hence, confusion reigns and more and more people acquire the illness in a manner invisible to the health system at large.

    Also, multiple illness models exist, each with its own merits, all of which may ultimately be relevant. However, even to an ME/CFS person, the problem of understanding the whole, appears to them like some unholy mess.

    One key is to have ME/CFS-knowledgeable people positioned in powerful places, but as yet, this does not seem to exist as adequately as one would like.

    Prepairing a program for the future requires a team of intelligent, ME/CFS literate individuals working together towards a unifying goal that others can readily understand and which makes sense to them, in which human beings are returned to levels of capacity that enable them to contribute to society in a manner that is cost-effective for the community or that meets the goals of a humane society.

    It is important to recognise the negative role that uninformed doctors have in perpetuating the problem, by alluding to ME/CFS as some kind of myth. These doctors are more than a hindrance. They actively block effective research. This must stop.

    The sceptical doctor lobby is significant and any committee charged with creating a workable solution has to deal with this lobby first.

    Funding needs to be sufficiently adequate to prevent the problem of different but equally valid projects having to compete with each other for limited resources. Otherwise, I could envisage infighting occurring amongst well meaning, highly qualified research groups.

    None of what I’ve said is really that new.

    I hope that this sufficiently compliments Terri’s excellent speech.

    Thank you.

    Dr John L Whiting

    • Jennie Spotila says:

      You asked, “I wonder how much leverage the CFS Advisory Committee has?

      Secondly, how likely is it that the advice given to the Committee will actually be acted upon?

      Is this a simply a toothless tiger committee whose role is one of listening to public concerns and nothing more?

      To whom does this Advisory Committee answer?”

      The CFSAC does not have much leverage at all, by design. The committee makes recommendations to the Secretary for Health and Human Services. Unlike in past years, the agencies now do respond to the recommendations although usually not with a “yes.” The committee is independent, so does not really answer to anyone except the public. The committee roster is comprised of ME/CFS experts and those with relevant experience.

      Many people feel the committee is useless, and no longer participate. I’m not surprised that Terri was told that her comments will make no difference, as many people do feel that way. But one advantage of this committee is that the agencies have to show up twice a year and state for public record what they are doing (or not doing). We learn a great deal through those reports. It is also the only venue where advocates and patients have the opportunity to speak to federal officials. That is also valuable.

      • Gemini says:

        Thank you Terri, excellent testimony! Thank you Jennie for reminding us CFSAC allows for communication with federal officials, a dialog that then becomes an “official public record.” HIV/AIDS has a “Center for Law & Policy.” Perhaps Terri if she’s familiar with it might help us look into whether a similar ME/CFS group might help us get better responses from government agencies?

    • kalabra says:

      Thank you for trying but do agree with the dr. Sorry you are ill. How many actually have died? Not an immediate threat in numbers to scare the general public. I hear people on fb saying they are dying… perhaps we are slowly. Too an outsider, we look fine. Listen to us… we are each different. Largely housebound now for decades, alone except the years fully bedridden when my mother cared for me now with no family remaining, it seems the symptom focus changes over the years though the basics remain the same.
      As for who died due to the illness, unless it was due to suicides, one can’t prove cancer or heart disease was caused by ME.
      For those of who can’t tolerate medications, what can the dr do other than feel frustrated?
      Wishing you to be one who finds help. Thank you all for comments though agree criticizing a heartfelt stranger reaching out is counterproductive.

  28. Findlow says:

    Dr John – you so rightly say:

    “It is important to recognise the negative role that uninformed doctors have in perpetuating the problem, by alluding to ME/CFS as some kind of myth. These doctors are more than a hindrance. They actively block effective research. This must stop.”

    Whilst Terri’s tremendous speech is addressed to a US audience, people will be all too aware of just how relevant her, and your words I have quoted above, are here in the UK. Indeed, it is of course, from this country that the iniqitous PACE trial, with all its ramifications as to health policies, social security, and general attitudes to ME/CFS, has been foisted upon us. It’s a terrible, shameful and unjust situation.

    Thank you Terri, for your powerful words, and good luck (but look after yourself!)

  29. Patty Hirst says:

    Terri, Jennie, and Dr. Whiting, thank you so much for the candid comments. I hope all of us patients, advocates & caregivers will get a voice that can be heard around the world! This disease is real, we are suffering from neglect, and it needs to be taken as seriously as a heart attack!! Thanks for all the “voices” that refuse to be ignored. ?

  30. Maureen MacQuarrie says:

    Jennie — thanks for being on the ball and posting Terri’s comments and thanks Terri for delivering them. They certainly are important and reverberate across the ME community. But the powerful message is to the government and to the public and it is they who need to hear it … “Do not neglect us.” #Millionsmissing next week is aimed at these groups. There were other powerful testimonies at CFSAC as well as the poignant request by Jeannette Burmeister for a minute of silence to remember those dead and suffering as her “testimony” the previous day. CFSAC is not be perfect but it does serve the purpose you, Jennie, have noted of requiring updates from various government agencies and (unless they stick with the very frustrating webinar format) of providing a venue for ME/CFS experts, advocates and patients to speak with federal officials — we in Canada have nothing like it. And even though the subject matter is from the U.S. it provides important information for us as well.

  31. Laurie P says:

    For those who haven’t seen this, on page 14 of The SolveCFS Chronicle, Spring 2016 newsletter, is the article “Solve ME/CFS Initiative Updates Its Report Card on Revised CFSAC Responses” It can be downloaded here:

  32. Kathy d. says:

    Thank you, Terri, for your remarks. They are appreciated. And whether one has been sick for 30 years, as I have, or sick for years and just recently diagnosed, we are all suffering in one way or another.
    And we should have solidarity with each other. We have a lot more to gain that way than divided and critical of each other.
    And I’m so glad to hear of your ACT-UP activism. ACT-UP was fantastic and carried out great actions. In my city, they seemed to be everywhere, doing everything — and they were well-known, for good reason. The Silence = Death slogan was everywhere.
    And they succeeded in what they were doing: main point.
    So, whether we can learn from Terri and ACT-UP can only help us.
    We wish we could be activist like ACT-UP and take action like their members
    did. But many of us have physical limitations which make it hard, and so
    we do what we can in other ways, online, by phone, making documentaries,
    pursuing lawsuits, etc. Some sufferers have had protests.
    But this is really a tough nut to crack. Even evidence of biomarkers and
    differences in ME/CFS sufferers’ brains from those of healthy people are
    It appears that the IOM committee’s report is being brushed under the rug.
    Any and all advice from an experienced activist is needed and appreciated.

  33. jimells says:

    The most important question we need to ask is, exactly who is behind the policy of burying the illness?

    If one concludes that the policy of no research is due to agency incompetence and lethargy, then a noisy campaign like ACT UP should be sufficient to raise the social cost of the current policy to a point where changing the policy becomes cheaper and easier than continuing to ignore us.

    If one concludes that the policy is actually controlled by disability insurers like UNUM, then an ACT UP-style campaign will not do the job by itself. What does an insurance executive care about demonstrations at NIH?

    But if troublemakers drag the insurers into court and win big judgements for harming patients, that would get their attention. After a monumental struggle the tobacco industry was held to account for their fraud, and they are still paying the price today.

    There is plenty of evidence of conflicts of interest between UK agencies, the insurers, and the PACE People. [1] We know the PACE People have deep connections to the NIH and CDC, all the way back to a 1991 NIAID & NIMH conference that featured Sir Simon. But that’s not enough to go court. We need a real investigation into these connections, as called for TEN YEARS ago by the Gibson Enquiry. [2] I sure hope someone like David Tuller is working on this…



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