Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
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Well Done! Terri Wilder remarks at 1/12/17 meeting of the CFS Advisory Committee

Discussion in 'Action Alerts and Advocacy' started by Jennifer J, Jan 14, 2017.

  1. Jennifer J

    Jennifer J Senior Member

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    This is from Jennie Spotila's site Occupy M.E.

    http://occupyme.net/2017/01/13/comment-by-terri-wilder-11217/#comments

    It's quite powerful and spot on. Here's a couple excerpts. Thank you Jennie, and Thank you Terri! :thumbsup::thumbsup:


     
  2. Mary

    Mary Forum Support Assistant

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    I don’t think it’s a good idea to conflate racism with how we with ME/CFS are treated.

    The first is an institutionalized evil, woven into the fabric of our nation with its origins in slavery; it was codified in law until relatively recently; in some areas black people were actually risking their lives when they tried to register to vote. Hard to imagine for the majority of us I think.

    We with ME/CFS are subject to ignorance and even apparent malice at times (though I believe it’s primarily ignorance), but in no way is this equivalent to the impact of racism in our country. To make this comparison trivializes the issue of race in America.

    When someone tells me I look well, they’re not trying to hurt me; they’re just stating a fact. It’s true, I look well, when I’m not crashed. This is a bewildering illness. If I didn’t have it, I’m sure I would be struggling too to comprehend it.

    I’m not going to be offended if I’m referred to as a "patient". We ARE patients of doctors. It felt like Terri Wilder was going out of her way to try to find things to be offended by. There are indeed very real and at times extremely damaging things inflicted on people with ME/CFS - GET to name one, being told it’s all in our heads, etc., but there’s no need to look for "microagressions".

    I don’t want people to have to walk on any more eggshells around me than they already do, e.g., by having to use the correct term to refer to me (I’ve asked people closest to me to not ask how I am because it gets too hard to do, to keep saying I feel like s*t, so I’d rather just not talk about it - they know I’m touchy! With good reason of course, but, still, touchy (though I try very hard to keep this in check)). And with others of course I just say, fine, thank you, like Sasha’s motto.

    I think the concept of microagression may be an extremely valuable one for comprehending the effects of racism on daily lives. But it just doesn’t fit with ME/CFS. ME/CFS is neither minor nor trivial, but the way we are treated is just not on a par with nor equivalent to racism by any stretch of the imagination and to try to conflate the two does more harm than good.

    And the phrase "able-bodied privilege" - NOOOOO! I hate convoluted terms like that. It’s an awkward and unsuccessful attempt to draw an analogy between white privilege and those with good health. It just doesn’t work, and is a poor use of the English language to boot.
     
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  3. TiredSam

    TiredSam The wise nematode hibernates

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    I quite agree. Even though she's fighting our corner, when I got to "start by checking your able-bodied privilege and how you participate in microagression" I decided I just couldn't like it.
     
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  4. Jennifer J

    Jennifer J Senior Member

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    Thank you, @Mary. I love this forum and everyone that participates on here. I learn so much from everyone and it makes me a better person. I've grown by reading and seeing how everyone communicates with each other here, too. I'm not able to communicate all my thoughts about what Terri said and about what you wrote. What I write right now will be less than what I'd like it to be for many reasons. I struggle with the most accurate words to use and even putting my thoughts together, my thoughts are much deeper, thoughtful and able to see complexities than I'm able to put into words. I've always had more of a math brain than an english brain, ME isn't helping either one of those.

    I struggled with writing spot on last night but was too fatigued and didn't know how to word it differently at that moment. I cringed at a few things she said and the analogy I wasn't sure about. I did find what she said powerful, too, and she made some good points to think about. I agree that it's not the same as racism and can see how it takes away from the impact (want to use another word or words but struggling) for racism that word is used to describe. I do see parallels or similarities in some things, that's how my brain works, yet realize it's not the same at all. Last thing I want to do and most likely other people want to do when we say things, is take away from or trivialize the horror and injustice of what people have suffered and still suffer.

    Some of what she said, though may be taken wrong. For me she was trying to humanize (for lack of a better word or words) us more, being viewed as a patient there can be a detachment that comes with this which is necessary and it is what we are, but also a certain treatment and way of viewing seems to come with it, which I think we all have experienced. Also, many have said to me I look fine, and it was said to me in a way or context (I wasn't misinterpreting it) that was insinuating that what I was saying about my health wasn't true. It is a common way of thinking though that one must look bad or have something noticeable otherwise they are fine.

    You made many good points that I agree with. This gets confusing to me at times the terms used but also elicits a lot of deeper thought on my part. I have a young friend, she's probably an over zealous sociology major. I've probably become a little desensitized to some of these terms from listening to her, sometimes not sure what to think of some of them, and have also looked at things in a way that I didn't before which is good even if I didn't see some of them to the extent or fervor she expressed them. Other times I'm very torn about the terms used and what it expresses. My torn-ness, I'm not sure what that says about me or what it says about the terms or how they are being used. I like that it gets me thinking and makes me more aware. My default over how things are expressed sometimes is, I try to also see the underlying of what is being said, yet still stay aware of the complexities involved.

    I think Terri was brave. I hope the things she said will speak to people in a way that will make a positive difference in changing things with more urgency and understanding, making things better for us and for all people who need help. As she said, we are fighting for our lives.

    Edit: added too.
     
    Last edited: Jan 14, 2017
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  5. WillowGris

    WillowGris

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    I think Terri was brave, too. I wish my brain would let me say more tonight. I am glad to have found you folks. Thank you for sharing news and spreading the word and having conversations that matter a whole lot to me personally. :redface:
     
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  6. Mary

    Mary Forum Support Assistant

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    Hi @Jennifer J - You make some very good points. I still strongly dislike the term "microagression" when used in the context of ME/CFS, but I do see what you mean about calling us "patients" - it can be a condescending term, that somehow we're not to be taken seriously because we are patients and we can't possibly know what's going on with us..

    And the bit about looking well being used against us - how can you be sick when you look so well being the unsaid subtext - is also quite valid. I guess I have trouble sorting out what I would consider to be the underlying valid issues Terri raised, from what I consider to be the socio-babble (for lack of a better term!) in which she phrased it. I think the unfortunate microagression analogy and "able-bodied privilege" terminology and concepts totally undermined, for me, anything she was trying to say.

    I value this board very much too and very much appreciate your response here! :nerd:
     
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  7. jspotila

    jspotila Senior Member

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    I find this discussion very interesting, for a few reasons. I would like to share some of what I understand Terri to be saying.

    First, regarding "person with ME" versus "patient," I had never heard of making that distinction before I met Terri. That insistence on saying person with ME comes from her background in ACT UP. In 1983, a group of HIV/AIDS activists wrote a document now referred to as the Denver Principles, and began the empowerment of people everywhere. There is a nice summary blog post about it, and here is the actual quote from the Denver Principles:

    We condemn attempts to label us as 'victims,' which implies defeat, and we are only occasionally 'patients,' which implies passivity, helplessness, and dependence upon the care of others. We are 'people with AIDS.'

    Second, regarding microaggressions. That term is not used only in conjunction with racism. Microaggressions have been studied in the contexts of misogyny, gender issues, and disability as well. It encompasses "the casual degradation of any socially marginalized group, such as the poor and the disabled."

    Microaggressions are everyday exchanges that are usually below the level of awareness of members of the dominant culture (which will change based on the context). People perpetrating microaggressions often mean no offense and have no idea they could be causing harm. The general point is that the dominant or majority culture constantly reinforces that culture by sending signals that the minority culture is "other."

    So for example, I consulted a doctor once for a health issue unrelated to my ME diagnosis. At our first and only appointment, the doctor reviewed the list of my diagnoses and when he got to chronic fatigue syndrome, he looked at me and said, "You don't look tired." He probably meant no harm, and was maybe even trying to be funny. But the comment was incredibly upsetting to me. He was behaving from the mainstream view of my disease, reinforcing the erroneous stereotype that we are just tired. But by doing so, he dismissed my experience and knowledge. That was a microaggression.

    Another example is travel to meetings related to ME. Both I and other people serving on committees have had to constantly request extra travel days for recovery, and sometimes are told there is no budget for it. The CDC working group on the new diagnostic info on the website held a one day face to face meeting, but they made no allowance or accommodations for remote participation. As a result, at least one caregiver was not able to participate despite having put in all the time for meetings leading up to the face to face. That failure to plan and budget for remote participation is rooted in ignorance on the part of healthy people at CDC, with no attempt made to examine what accommodations might be needed. That unintentional (I assume) reinforcement of the usual expectations one might have of people traveling for a meeting could be experienced as denigrating by the caregiver or person with ME.

    I don't agree with every single point that Terri made, but I think her use of a term like microaggression or ableism is worth examining. I have found that a lot of times, people just don't think. I include myself in that. It is far easier to do things the way they have always been done, and sometimes that results in hurting or offending people who don't fit that mold very well.
     
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  8. Groggy Doggy

    Groggy Doggy Guest

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    If we want to be heard and not forgotten, we must choose words that are powerful and bold. I feel Terry accomplished these goals with her recent testimony and her testimony from last year (which I still remember). She stands out from the crowd.
     
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  9. Mary

    Mary Forum Support Assistant

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    @jspotila - I've been thinking about the whole "microaggression" concept. Perhaps we're just hung up on terminology? The definition of aggression, according to Merriam-Webster, is:

    Another definition (the first one that pops up on-line) is:

    I think we have to be very careful about accusing someone of aggression, however "micro", because it's a powerful word and involves intent to harm or dominate someone. When someone out of ignorance uses the term "chronic fatigue syndrome", they're not being an aggressor. They're actually trying to get it right, at least they know enough to add on the word "syndrome".

    You do make a very good point about using the term "people with ME/CFS" as opposed to "patients". I had never thought that through before and I agree, it's a more powerful stance than "patient". However, I've often used the term ME/CFS patients myself. So according to Terri, I've been guilty of "microaggressions" against myself and others. But it will make me crazy if I start thinking that way - I'd prefer just to be educated without a negative label being thrown at me. Also, what "privilege" do I own that causes me to call people with ME/CFS "patients"? when I'm one of them? You can go crazy with this stuff.

    Your doctor's statement that you "don't look tired" would have been offensive to me and I'm sure everyone here too. Many have heard much worse from their doctors, and for many of those doctors, I would call them aggressors, those who choose to ignore research and treat their patients with contempt and lack of respect.

    I can imagine that calling a group of people "the homeless", as opposed to people without homes might be considered a microaggression by some, although I'm sure we've all done that. And then if I hvae to start thinking of myhself as "home-privilged", it will make me nuts.

    There are very real and extremely serious issues around ME/CFS and its perception. As we all know, research has just not been done and patients have languished for decades due to ill will and a lot of ignorance. So I'm not minimizing this at all. However, I think we need to consider exactly what we want to accomplish here. If it's to educate and raise awareness, then I don't think calling someone a micro-aggressor is going to accomplish that, but instead will alienate many otherwise well-meaning people. Because no one wants to be called an aggressor, especially when they're trying to do the right thing.

    But for those who are in positions of power and choose to withhold funding or to inflict harmful treatments on us, I totally agree, they are being aggressors and need to be called out.
     
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  10. TiredSam

    TiredSam The wise nematode hibernates

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    I prefer the term "ME sufferer", because it's what we are, and for most of us it applies 24/7. As I've said before, no-one has any business referring to us as "patients", because that word implies someone in receipt of medical care, whereas for 30 years all we have had is neglect and abuse. How many of us have long since given up going any where near our country's health system and decided we are better off suffering alone? "Patient" my arse.

    Never mind checking your privileges, check your f***ing health system.
     
  11. WillowGris

    WillowGris

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    Hear hear!
     
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  12. Woolie

    Woolie Senior Member

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    @Mary, I had some of the same concerns as you on reading this. My fear was that the crimes against PWME listed by Terri were so many and so broad that people reading it are likely to come away thinking "don't engage - you are sure to offend in some way". I hate the idea that people will begin to focus more on how to "manage" us, than on actually listening to us.

    Terri writes well, and as others have said, makes some good points. As a person with ME, I found it satisfying to read her piece, we are all so angry and fed up with being treated like nutters. I'm sympathetic with the idea that we shouldn't be referred to as patients, because there is so much baggage that comes along with this term - using "patients" encourage people to see us as other, as different from them. Not as fellow humans managing a dreadful illness. "Patients" comes to be synonymous with "crazies" in people's minds.

    But from the point of view of a non-ME reader, I worry that the good points in Terri's piece are diminished by the less strong ones; they tend to get swamped in a litany of criticisms. It is good that she finished off with some positive requests. But these could have been better focused.

    I was just thinking about what works best in my family if I have a major gripe with someone - is it effective to list that gripe along with every other thing they do that annoys us about them? Or is it better to focus on the big concern, and embed that into a narrative that also recognises their point of view as well? Is it good to focus on the complaint and why we're so annoyed? Or is it better to focus instead on what we would like the person to do in future? To be fair, ME is not exactly the same. I do think people need to appreciate what a hard time we've had and why we're so angry. But there are still some good lessons to be had from that family scenario, about how to get people to listen.
     
  13. Mary

    Mary Forum Support Assistant

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    I totally agree! Like I said, I found that I, a person with ME/CFS, had managed to do things "wrong" according to Terri. So I can only imagine how others would feel after reading that laundry list - "don't engage - you are sure to offend" - absolutely!

    I think this is excellent advice. I will have to try practicing it in my own life! ;) (seriously!) You've said it very well. I was going to attempt to paraphrase what you said but can't improve on it. :thumbsup:

    None of this means we should accept being treated badly or with disrespect or contempt. We absolutely need to speak up for ourselves - but how we do it makes all the difference.
     
    Last edited: Jan 15, 2017
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  14. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    This is what I wanted to say too, but brain fog interfered. Thanks for saying it for me. Terry's testimony is one to remembered, absolutely.
     
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  15. Barry53

    Barry53 Senior Member

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    I would think that Terri Wilder's comments are well intentioned, but a bit off the mark. At the very least it opens up discussion on some things that need discussing. My wife wants to be treated as normally as possible. As with everything, there are issues of perception and perspective here.
     
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  16. Barry53

    Barry53 Senior Member

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    I think it is a somewhat fanciful term for someone putting others down due to some prejudice or other - or simply because they are a bully and can get away with it. It is a dark art that seems to have been highly perfected through human evolution unfortunately.
     
  17. Mary

    Mary Forum Support Assistant

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    Right, I understand what the term means. I just don't think it's applicable to people who aren't bullies or even prejudiced, but who are just not as well-informed as we would like them to be.
     
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  18. jspotila

    jspotila Senior Member

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    I think this is a misunderstanding of how the term "microaggression" as used in academic scholarship (yes, it has been studied) and activist discourse. A microaggression is, by definition, behavior that causes harm without the actor's intent or even knowledge. Intentional harm is bullying, prejudice, and/or bigotry.

    I also think the term "microaggression" has gotten more attention in popular conversation in the last year or two, and has at times been taken to an extreme on college campuses. But it is a very relevant term for people with ME. For example, we all know that accessibility means more than ramps. The snafu with the webcasting of this CFSAC meeting is an example of inaccessibility through ignorance of our needs. Microaggression, because I would like to assume this inaccessibility was unintentional.

    The reason it is important to call this out is to educate the unintentionally ignorant. If we don't teach feds what accessibility means for our population - and the diversity of accessibility needs within our population - then they will repeat the same behavior. I would much rather call out what goes wrong, with the intention and plan to fix it.

    Finally, for those worried that Terri is not sufficiently focused on priorities or action or whatever, I encourage you to look at her activism in ME over the last year. She is newly diagnosed, but she has already made a great impact. I've attended meetings with her, and she is very much focused on what matters. She certainly knows the difference between the rhetoric of public comment and the behavior that gets results in meetings.
     
  19. Woolie

    Woolie Senior Member

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    Thank you, @jspotila. I don't think anyone means to can Terri for doing her advocacy in her own way. Anyone who makes the effort to campaign in our name is doing something truly worthy and needed, even if not everyone in the community agrees with ever single point they make. It would be awful for her to read this thread and think we are against her or anything.

    For us on PR, though, the themes in her piece have raised interesting questions about how best to confront the non-disabled world. Its stimulated discussion.
     
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  20. TiredSam

    TiredSam The wise nematode hibernates

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    Indeed. These are just micro-criticisms. Very much appreciate her work.
     
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