Comment by Terri Wilder, 1/12/17

Terri Wilder made these remarks at the January 12, 2017 meeting of the CFS Advisory Committee. I’m pleased to publish her complete comments, with her permission.

Good Afternoon- My name is Terri Wilder and I’m a person living with ME. It has been 10 months since I was diagnosed with this illness. In the past ten months my health has been up and down. I had to drop out of my PhD program after finishing all of my course work and passing my qualifying exam. Sadly, I only had my dissertation left to complete my degree requirements. Despite this life changing event, I have been part of two ME protests, two meetings with the Acting Assistant Secretary of Health and Human Services Dr. Karen DeSalvo, a meeting with the New York State HHS regional director, several meetings with leadership at the New York State Department of Health (to develop an ME webpage and create free state-wide ME CME/CNE content), convened several phone calls with a very high ranking NIH leader, and was the brain child behind the most recent call to action to get the NIH to release the promised ME FOAs. Simply put, I’m an activist fighting for my life.

What I would like to talk about today is how able-bodied privilege and microagression impacts the lives of people with ME. “Microaggression” is a term coined by a Harvard professor in 1970 to describe insults and dismissals he regularly witnessed non-black Americans inflict on African Americans. Psychologist Derald Wing Sue states that microaggression is “brief and commonplace daily verbal, behavioral, or environmental indignities, whether intentional or unintentional, that communicate hostile, derogatory, or negative slights and insults towards people.” People with ME encounter microaggressions frequently. Microagressions take place in everyday conversations, during ME meetings, during presentations, on websites with ME content, etc— often making them hard to call out.

So— when we put microagression into the context of ME the following examples come to mind: wearing scented body products in areas labeled as scent free is microagression. Telling a person with ME that “you don’t look sick” or “you look so normal” or asking them “you can’t give me ME can you?” is microagression. Inviting a speaker to give a presentation to staff at a government institution who is a documented misogynist and spreads stigmatizing untruths about person with ME is microagression. Placing damaging and inaccurate information on a government website about ME is microagression. Charging medical providers for clinical education on ME when we are so desperate to get ME medical education out in the world is microagression. Delaying the release of ME research FOAs is microagression. Stating that you don’t think a committee needs more people with ME on it is microagression. Holding CFSAC twice a year is microagression. Placing thinly veiled GET information in a publication about ME that goes out to thousands of public health professionals around the world is mircoagression. And referring to my illness as chronic fatigue syndrome is microagression.

Constantly referring to me as a patient is microagression. I’m not a patient 24/7 days a week. I’m a sister, friend, and daughter. I’m a person first and should be referred to as such. Using person first language is respectful and acknowledges that while ME is a part of my identity I’m not an illness and am only occasionally a patient in a medical provider’s office.

Projecting an “Us” vs. “Them” mentality is microagression. Illness lies on a spectrum. The reality is that anyone can become ill at any point in his or her life. So— if an opportunity to meet with a person of power OR a ME workgroup or committee seat comes open and you don’t immediately think of it as an opportunity to include a person with ME you are reinforcing the idea that an able-bodied person is a better fit. And that simply isn’t true. That is microagression.

So— when you want suggestions on how to engage “stakeholders” start by checking your able-bodied privilege and how you participate in microagression. Stakeholder engagement isn’t just about convening regional meetings, phone calls, or sending out a survey to get input— it is about checking your privilege at the door every time you engage with or on behalf of a person with ME.

ME affects all of us differently. Since illness is on a spectrum from “more ill” to “less ill” I challenge people with ME to also think about abelism, microagression, and their privilege. For example, when you advocate on behalf of the community do you forget about the people who are completely bed bound or unable to speak? The most ill are probably people you will never meet because they can not come to a meeting like CFSAC or participate on advocacy calls or attend a ME conference in Florida.

I will close by sharing a story. I just recently finished reading “How To Survive A Plague” by David France. I encourage everyone in this meeting to at a minimum watch the documentary of the same name. It tells the story of how people with HIV fought for their lives during the early years of the AIDS epidemic. Not surprisingly, I was struck by the many parallels between ME and HIV in the early years of the epidemic when there was little government response and people with HIV were neglected and left to die. In the book Michael Callen (who was a person living with AIDS) gives congressional testimony. During his testimony he states, “So whatever you or your colleagues do or don’t do, whatever sums are or are not allocated, whatever the future has in store for me and the hundreds of men, women, and children whose lives have been irrevocably changed by this epidemic, the fact that the Congress of the United States did so little for so long will remain a sad and telling commentary on this country and this time.” As I read this I, of course, thought about my life and how one day I might give congressional testimony literally saying the same exact thing about ME.

People with ME are fighting for their lives. Don’t dismiss our activism in public forums, secure high-level meetings without us or send emails to us when you disagree with our published opinions. Don’t tell us that we got you in trouble with your boss when we wrote them a letter. It isn’t appropriate and is a form of microagression. We are engaging in any means necessary to end this illness. Join us or leave. This is about our lives not yours.
Support us in our struggle against those who ignore us, stigmatize us, discriminate against us, won’t provide medical care to us, won’t fund RFAs to improve our lives, don’t believe us, and undermine our efforts. Work with us to create spaces so that we are involved in every level of decision-making, are included in forums with equal credibility as other participants, and have the opportunity to share our own experience and knowledge.

And if you feel like your able-bodied privilege could possibly get in the way of the ultimate goal of curing this illness I encourage you to tape a picture of a severely ill person with ME by your computer or phone or keep it in your wallet so you can check your able-bodied privilege at the door when you literally walk into a ME meeting, when you meet with a high ranking government official on behalf of the ME community, create a clinical education video, respond to our email and calls, or when you create other materials that reflect our lives.

Thank you.

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26 Responses to Comment by Terri Wilder, 1/12/17

  1. Sam Pearce says:

    High five sister. You knocked it out the park.

  2. rivka says:

    Great job, Terri!!!!

    Of course telling us to exercise, which the CDC tells us and our doctors on their website, is a MACRO agression, because exercise can make us permanently disabled.

    • Donia says:

      Amen.

      And as one who “can not come to a meeting like CFSAC or participate on advocacy calls or attend a ME conference in Florida” I appreciate those of you who can and do on our behalf.

      Thank you for writing this Terri.

  3. rivka says:

    I’m trying to understand what Vicki from NIH said at CFSAC today. (I missed it “live” and read about it on Phoenix Rising.) She said the RFAs are to be for about $30 million over 5 years? Thus, this works out to about $6 million per year. In other words, this is a continuation of the same old pathetic gov’t response we have seen over the last 30 years of about $6 million given to ME per year. Am I understanding things right, Jennie?

    • Jennie Spotila says:

      That’s what I heard. The estimated two to three Centers and Data Center will share approximately $30 million over 5 years.

      • rivka says:

        Jennie:

        Follow up questions below. (But if you want to ignore them at this time, so that I don’t hijack Terri’s great CFSAC public comment, I’ll understand.)

        1. These RFAs could be in addition to other (non RFA) funding that NIH could give us, correct?
        2. In terms of RFAs, $30 million is very little, if it is spread out over 5 years, correct?
        3. Once an RFA is given for a disease, it is customary that no more RFAs are given that same year? So should we assume there will be no more RFAs for ME this year, or even the next 5 years?

        Rivka

        • Jennie Spotila says:

          1. Correct. Other grants could potentially still be funded.
          2. If there are two research centers and one data center, then they would share $6 million a year for five years. On the plus side, that’s a lot of money based on our field. But in terms of biomarker and treatment discovery, it’s far short of what will be needed.
          3. Vicky Whittemore commented this morning that it was “challenging” to pull this much funding together. I think it’s a safe bet that there will be no more RFAs for awhile.

  4. Kellie Nicholson says:

    Thank you, Terri. Thank you so much.

  5. Christine Dunbar says:

    Thank you Terri. My spirits soar when I hear the increasingly powerful voices of ME activists speaking truth to power.

  6. Bazia says:

    Thank you Terri! Spot on!!
    Wow! 👍🏻Wow! 👍🏽Wow!!! 👍🏿. I feel the uncontrollable urge to bounce off my sofa and applaud as if after a grand performance! 👏😇👏😇👏😇👏😇👏. Cue healthy person applauding!!!(I won’t since I’m recouping from a Drs. apt. yesterday….and the clapping and noise would blow out what little energy I have.) Your words are amazing, accurate and I’m hoping blunt enough and repetitive enough to sink in!! Thank you for the new verbiage of microagression! I know we all understand it as “patients” of this dis-ease! Thank you! Thank you!!

  7. A great use of the opportunity for public comments. A magnificent effort.

    I have no idea how much this cost Terri and whoever helped produce it/write it – but I suspect it was a gargantuan effort, and add my thanks.

    I will do my little bit later to extend its reach.

    And I hope against hope that someone on the receiving end was actually listening.

    Thanks for posting it. Thanks for fighting for all of us.

  8. fadra tedesco says:

    Spot on!

  9. LJ says:

    Very well said, Terri. Thanks, Jennie for posting.

  10. Janine says:

    Excellent!!! Impactful!!! Insightful!!!

  11. billie moore says:

    So many moving patient and advocate talks. But Terri’s was one of the very best. And I agree with Rivka – I had the same thought – many of her items listed are macro, not micro agressions. Being turned away by an ignorant doctor is about as macro as you can get short of being beaten by the doctor. Possibly we should start focusing on a campaign to train people to start calling this treatment “abuse,” which it certainly is.

    THE talk of the two days, however, was Carol Head’s half hour talk yesterday. It will be up on the SolveME/CFS.org site sometime over the weekend. She has the most amazing way of telling these people they are doing everything wrong without their hating her. Sometimes she even gets them to do something useful. She hit every necessary need and every failure of the HHS.

    Overall, a hugely depressing meeting, as usual. Same testimonies (because nothing has changed), same responses (because there is no intention of real change), no change of substance in the HHS depts.’ actions. Plus, this was to be, we thought, a live-streamed meeting. Instead we got, essentially, was another webcast, no visuals but slides and very complicated to tune into by sick patients. For the HHS, CFSAC meetings are figuratively held in a storage closet with whatever facilities are handy and staffed by people who are put there by command, not because of knowledge or choice. And to add insult to years of injury, entirely too many ex-officios who know nothing about this disease and come unprepared – too much “it’s not my job.”

    • Terri Wilder says:

      Many of the points during Carol’s presentation were based on the messages that we delivered to Dr. DeSalvo when we meet with her this past year.

  12. Kathy D. says:

    Excellent job, Terri! Couldn’t be better. The ME/CFS community surely needs your powerful voice which tells the truth. There are so many examples of micro- and macro-aggression that assail us every day.

    But on the other hand, this information about the RFA’s is dismal. After all this hard work, NIH is giving $6 million a year each year for five years, which is about what they have already been allotting. So, what are they doing? And what does Vicky Whittemore say about this? We’re on a treadmill which is going nowhere.

    I wonder what it will take to get them moving.

  13. Jes Gordon says:

    Thank you thank you thank you Terri!!! I’m honored to be fighting this fight with you! Powerful words! Much gratitude. 🙏❤️

  14. Joanne says:

    Thank you, Terri for your activism and commitment. I know it comes at a great personal cost. I’m praying that those responsible will wake up to the great need and urgency of this issue!

  15. Susan Andres says:

    Thank you for doing the hard work that I can’t.
    I am recovering from my 3rd Spinal Fusion in 3 years and my 10th surgery in 1 1/2 years. I am exhausted.
    In 2008, I was diagnosed with Fibromyalgia, and at the same time 2 of my dogs had Lyme disease and were treated with antibiotics for a month. Although I had all the symptoms of Lyme disease, and had pulled the same ticks off myself that I pulled of my dogs, since my Lyme test was negative, any discussion of Lyme disease was dismissed.
    It took 6 more years to find a Doctor who diagnosed me with Lyme Disease, CFS, Epstien Barr Syndrome and CMV. After 1 month of antibiotics, I noticed my memory, brain power and stamina improving. After 1 1/2 years of antibiotics, my health insurance changed and the treating Dr no longer accepted it. I had to stop going to be treated by her.
    As any person who is disabled or has a chronic illness can relate to being unable to afford to pay $150. out of pocket per visit, so I had to stop the therapy. I don’t know if I got enough of the antibiotics that I should have, but it was all I could afford.
    My brain is improved, my memory is somewhat better. Not anywhere what is was before and the CFS is the same of not worse.
    Just writing this will wipe me out.
    I am looking for an exercise program for a person with CFS, that won’t wipe me out for a week.
    Are there any “real” exercise programs available for people with CFS/FMS, that won’t wipe me out?
    Thanks for the information and your hard work on my/our behalf.
    Warmly,
    Susan Andres

    • Jennie Spotila says:

      Susan,

      I’m not sure what you mean by “real” exercise programs, but I have strong opinions on this subject! If you look at the Heart Monitor tab at the top of this page, you can read a number of my posts on exercise and pacing.

      Contrary to mainstream opinion, aerobic exercise should be avoided at the start. The most straightforward advice I have for you is to try gentle stretching, yoga, or similar. You should take a break every couple minutes to rest. The guiding principle is to stop an activity when it starts to feel a little hard.

      Then keep an eye on your symptoms. Did that activity cause more pain or cognitive symptoms? If not, you can repeat the same pattern. If so, then you will have to cut back.

      There is a huge variation among ME patients. I have gone through periods of being bedridden and period when I could walk for 10 minutes. The goal is to do as much as you can WITHOUT increasing your symptoms.

      • Susan says:

        Thank you for the advice. I will look thru the Heart Monitor tab and see what works for me. After YEARS with Chronic pain, I have gotten very good at ignoring the signals my body sends me!
        It is going to take a lot of Cognitive work to allow myself to feel where and what my body is feeling.
        It may sound ridiculous to most people, how you wouldn’t know where it hurts. What they don’t understand is, that when you have Chronic Pain, you can’t constantly focus on it. There are things you have to do, feeling the sensation of pain in a specific area will keep you from trying to live.
        So, you block it from your mind. That way, it becomes a diffuse pain, all over and you can’t say specifically which area hurts.
        I belong to the ACPA (American Chronic Pain Association) it is a monthly support group meeting which is excellent!! I life saver! You feel so disconnected from society and then you walk into a room full of people who speak your language, who have share the common experiences of Chronic Pain. Dealing with Doctors and family who don’t understand what you are living with. Then suddenly you are admits a group of strangers know and understand, because they have lived the same life! They know what it means to push down the specifics of where it hurts, in order to live some sort of life.

  16. Magdalena says:

    Absolutely fantastic! I got full-body goosebumps reading this. Heartfelt thanks to Terri!

  17. Cindy Downey says:

    Thank you Terri, for your very moving presentation to the CFSAC! Your talk generated a lot of comments on Jennie’s blog. I think this is because the micro and macroaggressions, stigma, abuse and neglect of PWME, is such an enormous, and horrendous part of the entire ME picture, it moves us to comment, and congratulate your advocacy.

    We have all experienced numerous insults, and abuse from all and sundry because we have this horrible disease. Since 1988, its been open season on PWME. The anti-ME gang (PACE trial, negative media etc.), have done quite a thorough job of maligning our character, and this terrible disease.

    Many, if not most, feel entitled to pass judgement on PWME, and toss hurtful insults our way. We can be met with instant hostility from health care workers, friends, family, colleagues. And why? Do they think we will shape up and fly right; do they think they are giving us much needed guidance? Or are they just trying to make themselves feel superior? Or, as a couple health care workers said to me: “Must be nice.” Or another, a dental secretary, who although breaching confidentiality, discussed my health issues with someone not entitled to this information. Or the old stand by: “I’m tired too.” There are no boundaries in these people’s minds where ME is concerned. I think some believe nothing is too horrible to say, or do to those with ME. I’m sure everyone has a long list of similar, and worse experiences.

    I watched a video of one of the Millions Missing protests where Jennifer Brea said something to the effect of: ” If there is no treatment, at least there could be care.” But, there is no treatment, and in many instances there is no care, and far worse, there is outright abuse. So, thank you again Terri, for your very eloquent presentation to the CFSAC about this major issue for the ME community!

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