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Epistemically Challenged "My thinking about science has been...affected by my experience with CFS"

Discussion in 'General ME/CFS News' started by Kyla, Sep 8, 2015.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    http://www.senseaboutscienceusa.org/epistemically-challenged-julie-rehmeyer/

    Excerpt:
     
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  2. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Thanks for posting. She's well-regarded:

     
  3. Bob

    Bob

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  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    Good find.
    Thank you Julie Rehmeyer for speaking out for all of us.
    Excellent point about scientists breeding mistrust among people because of the careless way they've applied science.
     
  5. JaimeS

    JaimeS Senior Member

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    !!! :eek:

    Never heard it put quite that way....

    -J
     
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  6. user9876

    user9876 Senior Member

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    This was the PACE trial of course. In the original protocol they specified one set of thresholds for two measures the SF36 physical function scale and the chadler fatigue 'scale' (CFQ). The seemed lowish but ok. But after the trial ended they revised these thresholds. So the recovery threshold for the SF36 PF scale was below the trial entry criteria. With the its much more complex because they switch between marking schemes each will give a different ordering of fatigue between patients. But it means that some patients could be marked as recovered whilst still meet the trial entry conditions. They tested whether people met the Oxford definition but they did strange things with how they did these assessments so many people who didn't even meet their very low recovery criteria still didn't meet their modified Oxford criteria.

    We know that the reasons they give for changing the SF36-pf function scale are wrong as some people have looked at the population data that they quote. The journal who published the recovery paper knows but won't do anything about it. And they know.

    They refuse to publish the recovery statistics according to the published protocol. They accuses someone of harassment for asking when the changes were made and if they were approved by the trial steering committee. Unfortunately the UK establishment seems to support them spinning results including the information commissioners office who bought their 'we're being harassed we can't release data excuses'.
     
  7. Jenny TipsforME

    Jenny TipsforME Senior Member

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  8. alex3619

    alex3619 Senior Member

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    I had replied to this on the original site earlier, but its awaiting moderation.
     
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  9. Simon

    Simon

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  10. Denise

    Denise Senior Member

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    Thanks @Kyla for alerting us to this.

    This is another very interesting piece by Julie Rehmeyer!
     
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  11. JaimeS

    JaimeS Senior Member

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    Thank you, @Kyla.

    Something that neither article mentions is the reaction to one's own epistomological revolt by others. I talk to people - people who have been with me through this whole illness, who have heard everything - and I'm bowled over by how much faith they retain in the medical system. I can't help but begin to view that childlike trust, as contrary as it has run to experience, with a certain amount of disdain. They still believe in the godlike image of the doctor that society has sold them. Somehow, they also believe in my illness experience without question. How is this paradox possible?

    It makes me think that there has to be a certain amount of victim-blaming inherent in the retention of that image - that I have been duped and abused by the medical system, but due to some virtue they possess and I do not, it would be impossible for the same to happen to them.

    I had a long story to follow this, but maybe I'll put it in 'members only' since it's essentially a frothy-mouthed rant. If I do, I'll link it here.

    Grrrr. Arg.

    -J
     
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  12. Effi

    Effi Senior Member

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    I have asked myself the exact same question, @JaimeS ... I wonder if it's because they can't bear the thought of being in our situation, pretty much abandonded by science without any answers. It is such a comforting idea to believe that whatever will happen to you in the future health or otherwise, there is a solution, and you'll be fine. We are living proof of the fact that this is an illusion. So they'll genuinely feel for us and maybe even commiserate a tiny bit, but please don't ask them to come out of their little bubble where all is well. I understand this behavior, but at the same time it's super frustrating. I think it's a matter of perspective, and they won't get it until they live it.
     
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  13. Valentijn

    Valentijn Senior Member

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    Or until someone close to them lives it. I think it helps every time they hear of a different person they know who says "the system isn't working for many diseases."

    My in-laws never doubted anything when I got ill - because my future mother-in-law has had frequent debilitating migraines for years, with no real help for them. So my fiance and his parents immediately understood the concept of an invisible illness for which there is no cure or effectively treatment. And now in following my own experiences, they're better equipped to deal with attempted brush-offs from the medical profession in dealing with some severe back/nerve pain. We all know how necessary it is to push to get what we need.

    It's also been pretty easy with my mother's family. There's been IBS, mild fibromyalgia, and widespread food intolerances all over the place, including my stereotypically athletic 20-ish male cousin who does mixed martial arts but can't eat gluten without getting severe GI problems and farting all over the place :rolleyes: So there's also a lot of understanding about all these invisible oddities from there, even if the impact on me has been much more severe. And I'm the over-educated one in the family, so had some respect to start with due to that.

    ME is also fairly well-known in the Netherlands. I've never really had to explain what it was. The only problem has been with some doctors and therapists, who have probably been told it is one thing before they could see for themselves that it is something else entirely.

    So maybe some of them don't get it yet, but they are a step closer to getting it. And the older they get, the more people they will know with health problems, and the more health problems they'll get themselves. Eventually it will click.
     
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  14. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @JaimeS and @Effi I have to say I haven't noticed this. I will look out for this. I remember my partner getting particularly angry when drs failed to get a bit of lose bone out of my knee because it had shown up on the xray and should be simple (as opposed to my ME which they were semi excused from sorting out?).

    I suppose there are 3 questions here which could pinpoint attitudes:

    1. If you got ME would you have faith that the medical system would treat you better than I have been treated?
    2. If I had a different illness could I trust that doctors would know what it was and treat it quickly and effectively?
    3. If you had a different illness other than ME could you trust that doctors would know what it was and treat it quickly and effectively?

    I doubt we'd get honest answers asking directly but in theory this should show whether it is blaming us, ME, or denial.
     
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  15. Effi

    Effi Senior Member

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    @Valentijn I have a very similar family situation, with a few people who have lived (and sadly also died from) very severe health problems that were inexplicable. I have a few family members who have tried EVERYTHING and found no solution. They also encountered the same denigrating attitude from doctors, along the lines of 'it's all in your head'/'you think you know everything but you know nothing cause I'm the doctor and you're not'. They know what the reality of this experience actually means, so that helped a lot in terms of the support I got from them from the start. As far as the people who don't want to see it are concerned, I feel like the longer I am sick, the more they validate my experience as being real and severe. So that is something.

    @Jenny TipsforME
    If I understand correctly in your questions the 'I' are PWME and the 'you' are the others? I'll answer according to my experience with people who don't get it:

    1. They usually tend to think they will NEVER get ME. For some strange reason.

    2. From what I hear from people who have a known, treatable illness: they go to the doctor, follow the protocol, and feel better. Sometimes I'm baffled by how little they know about their own illness and how the treatment actually works. But I guess I wouldn't be studying all these complicated theories either if someone would do it for me and offered me a solution that actually gave me a better quality of life. Our knowledge stems mainly from necessity.

    3. As stated in 1, they will never get sick. But if they do, they'll go the doctor and he'll fix it. At least that's how the story goes in their imagination. And unless they actually live it, their bubble won't burst. That bubble is a pretty darn comfy place. I'd stay if I could!

    To end on a positive note: I focus on the people around me who are understanding and supportive. I do feel like things are changing, and more people are seeing ME for what it really is: a horrible, extremely debilitating physical illness. And once everyone gets with the program, funding will follow, so science will be able to finally find out what's going on. Or did I just crawl back into the bubble? Hm... :rolleyes:
     
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  16. dancer

    dancer Senior Member

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    I've been mulling this lately. I have done a lot of "small scale" educating of family and friends about ME/CFS. They have been vaguely interested and fairly supportive (although clearly not fully "getting it" - but who could if they hadn't fallen through this looking glass?).

    But recently I was talking to someone--sharing so much dramatic info about the history, the horrific day-to-day challenge of the illness, the current exciting research--and the response was rather flat until I said, "And it's spreading." (Which I confess there isn't enough epidemiological research to verify, but has been my impression.) Suddenly my friend's attention and interest heightened. REALLY heightened.

    It made me wonder if in the work of changing the narrative for advocacy, it would be helpful to highlight the truth: It could happen to YOU.
     
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  17. Jenny TipsforME

    Jenny TipsforME Senior Member

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    "They usually tend to think they will NEVER get ME. For some strange reason."

    I have a novel in my head about a group of pwme who live together in community. The final section hinges around the general population perceiving that they'll never get ME and my characters manipulating that perception.

    At the moment I'm not well enough to write it. I also have no idea if I can write fiction...
     
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  18. JaimeS

    JaimeS Senior Member

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    My rant is suddenly directly applicable to the conversation, rather than peripherally applicable.

    I have relatives who have no doubt that I am ill. They have seen me in PEM, etc. They have also heard me rant and rave about my previous GP, and agree sympathetically that I was much ill-used, and offered a few choice epithets of their own. Yet one of them still is a patient of my old doctor, who recently told him he might have hepatitis. I asked what lab values the doctor had found to be 'off' and whether anyone had done an actual test for hepatitis, yet, or if there were solely signs of liver damage.

    "I don't know."

    "AST? ALT?"

    "I'm not sure."

    Yes, why should you want the lab results that say you may have a potentially fatal illness? Why should you want to find out if that's the case? Better to trust the guy with the white lab coat and the history of poor diagnostic skill.

    I listen to this person's symptoms. I know he has a history of alcoholism. "Listen," I say, "because of your history, and because you are a guy, you are not going to be tested for autoimmune-related cirrhosis. But you can't rule it out, okay, and there's no harm in being tested for it. Make sure you say you want to be tested for autoimmunity as well. And make sure you ask for a bile chelator for your skin." (His skin was itching so badly he was scratching it bloody.) I wrote down the name of the condition, the name of the test to check for it, and the phrase 'bile salts chelator'.

    Back from the doctor.

    "Well? What happened?"

    "Doctor said it's definitely not hepatitis - it's because of the alcoholism."

    "Oh, they tested you for hepatitis and it was negative? That's great!"

    "No, no. No tests have come through yet except these." (Hands me CBC. It looks bad.)

    "He told you it's not hepatitis before he tested you for hepatitis. It's nice that he's so confident, but there is nothing here that runs counter to a diagnosis of hepatitis."

    *Shrug*

    "So you're getting tested for hepatitis now."

    "Yes, but he's sure that's not it. It's just in case."

    "And the autoimmune test?"

    "Oh. Well, I left that paper at home by mistake."

    Riiiight. "And did you get bile salt chelators for the itch?"

    "He gave me something to take."

    "What is it?"

    "I'm not sure. I took one just now."

    He's not sure and he took one just now.

    I look it up. It's your basic antihistamine, albeit extra-strength. Contraindicated in liver disease, of course. He took a basic antihistamine two nights ago in non-prescription form. Which did not help. This makes it look, actually, like the GP in question didn't have the first clue why someone in liver failure might get very itchy - and therefore is treating the symptom in a very general way. What the heck, I think, maybe he just needed a stronger antihistamine, what do I know.

    "So is your itching any better?"

    "I don't think so. I mean. Maybe a little? I can't tell."

    I nearly tear my hair out. He *knows* this guy's a moron. He watched him *be* a moron with me. Is this a total lack of curiosity? A death wish? Or does it have to be YOU who gets screwed over for it to sink in at all?

    The guy was on Lipitor, developed diabetes. There's a class action lawsuit that claims these two events are directly related. "You know," the GP said, apparently, "maybe you should stop taking that. It's not good for your liver." But he never recommended stopping the drug until now. Apparently all those reports about diabetes and statins didn't come onto his radar, or he's trying to avoid a lawsuit by claiming that he's taking him off of Lipitor due to liver failure.

    And, an update: on the second dose of antihistamine, the itching turned to burning, with a side dose of mania. His wife told me he didn't sleep last night at all.

    Yet, his faith in medicine in general, and this physician in particular, persists. Neither he nor his wife are even discussing going to anyone else.

    Would it take being set on fire or something? I don't know what to make of this kind of complacency.

    -J
     
  19. Effi

    Effi Senior Member

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    @JaimeS wow that must be so frustrating! It's like talking to a brick wall. :bang-head:

    This is actually not the first story I've heard (nor the last I'm afraid) where people with a history of alcoholism don't get the right medical treatment because every single thing they have is lazily linked back to the alcoholism. Even when it's obviously something else. Even when they end up DYING from the condition (this happened recently to someone I know - also auto-immune in this case). And then every specialist that treated this patient made sure they were not held responsible, blaming each other or rather blaming the heavens, or whatever, for what happened. And they got away with it, obviously.

    I feel like your relative sounds more overwhelmed than anything else. Which is understandable I guess. But your ex-GP sound like a complete idiot. Wow. That's another illusion we have: that all doctors know what they're doing, just because they ARE doctors. And we trust that if they make a mistake, they'll be removed from the profession somehow. By Hippocrates himself if need be.

    It's not just about not helping patients. This GP clearly makes his patient sicker. SICKER. It's like a contractor coming over to install a new kitchen, but instead he demolishes your entire house. And bills you for it. Awesome. Thanks. Don't worry about me, I'll be fine. :aghhh:
     
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  20. Jenny TipsforME

    Jenny TipsforME Senior Member

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    It is odd, especially now it's so easy to Google everything. I know very little about liver problems but I do just know that itchiness can be a sign (also going yellow). That's without medical school or any special interest, it's common knowledge.

    People who have never had ME don't ask for printouts of results etc like we do! The only thing that can sometimes be similar that I'm aware of is cancer patients worry they don't get the best treatment for money reasons and become experts on possible drugs. That may be a UK thing though.
     
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