Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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A Little Venting...Problems with the cfs/chronic pain community

Discussion in 'General ME/CFS Discussion' started by Pinetree53, Oct 20, 2018.

  1. Pinetree53

    Pinetree53

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    I need to vent my frustrations a little bit...why are some members of the CFS and chronic pain community defensive, abrasive, skeptical and downright ignorant?
    Why is it that everytime a fellow member of the community shares something that has helped them, he/she gets attacked, things are said like 'oh that doesnt work for everyone so why are you sharing this' or 'this is only anecdotal so i dont believe this'. We as a community need to come together and listen to more of what helps others. We are in a concensus that there is not a one size fits all treatment...but dont we already know that? Its the same thing in modern medicine. For example with high blood pressure. The doctor has a few blood pressure medications to choose from. Because one medication does not work for everyone. That is obviously a given. But being in this community, it is becoming more and more obvious why there are little to no recovery stories or little to no stories about 'this worked for me, you should try it to'. Some People who are still sick wont believe a single thing another fellow community member says based on it being an anecdote. Its really frustrating and as i am trying to get the information out there about what has helped me i am always met with anger and criticism. It makes me want to give up telling my cfs story to others.
    (My frustration is not stemming from the PR community but rather the facebook community, so i am not bashing anyone here. I just really needed to rant)
    Thanks for listening.
     
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  2. Wolfcub

    Wolfcub Senior Member

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    I don't know what it's like anywhere else. I came straight here for some reason....

    Personally I like "anecdotal evidence", even though lots of times I am unsure of trying some methods (at the stage I'm at) But I love it when I read that some treatment/protocol is really working for someone. I wouldn't even necessarily have to know their scientific sources, or how many double-blind trials a treatment had undergone (although yes, that is very useful.)
    The strangest things can work sometimes for one person but not for another. But it's lovely to hear when someone is "winning", whatever they're doing.
     
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  3. Sushi

    Sushi Moderation Resource Albuquerque

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  4. Wishful

    Wishful Senior Member

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    The reason for so few recovery stories is simply that ME is difficult to recover from. A few people do recover, post what worked for them, and then, for some reason, no one posts a 'it worked for me too' story. I've posted about two treatments I accidentally discovered that work reliably for me and make a huge improvement in my quality of life; so far, no 'it works for me too' stories.

    I've made quite a few posts about how experimenting can lead to a treatment that works reliably, but I temper that by pointing out that what works for one person typically only works for that person. ME is very individualistic. I don't want people to expect that 'works for me' stories will automatically work for them too, and give up after trying a few that don't work. Trying different things takes time and patience, but it can lead to an improvement in quality of life.

    What would be useful is a sticky list of things to try, with polls for 'tried it and found that it: a. works reliably, b. worked temporarily, c. no effect, d. made me feel worse'. Maybe we'd see that BCAAs were tried by 38 people, with 8 claiming reliable benefits, while colloidal silver was tried by 18, with 1 'works reliably' and 16 'no effect'.

    As for why some people are abrasively skeptical, perhaps they've spent a lot of money based on marketing claims or 'works for me!' stories, with no benefit, and haven't managed to find anything that works for them (maybe due to not experimenting properly), and now assume that all claims of recovery are false. There are a lot of 'true believers' in whichever treatment who might be a bit pushy about it ( 'You got to try this!!!'), leading to a lot of disappointed people who tried it. Then there are true believers in a hypothesis, who are pushy about treatments based on theat unproven hypothesis. Then too are the people who claims success with obvious quackery, or with treatment cocktails so complex that it's hard to believe that they even know which component if any is working.

    My advice: post your stories about what works for you, with a disclaimer that you aren't guaranteeing that it will work for anyone else. Tone is important too; try to avoid sounding like a fanatic.

    Oh, and don't be too disappointed if no one posts a 'it works great for me too!!!' message. I was disappointed that my treatments don't work for anyone else (there goes my Nobel prize ;)), but that's ME: a disorder without easy to find treatments that work for more than a few people.
     
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  5. geraldt52

    geraldt52 Senior Member

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    The controversy here is really anecdotal reports of CFS treatments and recoveries, and I don't think that anyone objects to them being shared on PR in a respectful manner. But there are problems with anecdotal reports regarding CFS "treatments", and they shouldn't be ignored.

    First, nobody even knows what CFS/ME is, or who has it. I don't pretend to know who has CFS/ME and who doesn't, but I'm virtually certain from the symptoms that people describe that a lot of people who have the same diagnosis as me don't have the same illness as me. Until I know I have the same illness as someone else, how relevant is it to me if something "worked" for them? In 35 years I've also had many things appear to "work", only to have them stop "working" a bit later. Do people who report what has worked for them then routinely re-report when it stops working? Somehow I doubt it.

    Second, anecdotal reports by patients are notoriously unreliable. That's why there are double blinded studies. The first Rituximab trial was a raging success based on reports by the patients. Yet, the subsequent double blinded study showed Rituximab to be no more effective than the placebo. That means that as many patients reported that the placebo "worked" as reported that Rituximab "worked"...which says nothing about Rituximab, but clearly says that patient reports alone are not very reliable.

    I'm no more upset, or convinced, by someone claiming that Cognitive Behavior Therapy, Graded Exercise Therapy, the Lightning Process, or the Gupta Program "working" for them than I am about someone claiming some drug or supplement or other treatment "working" for them. If they think it worked for them, then it worked for them. That doesn't mean I believe it's going to help me, because I don't have any idea what illness they may have, or if their perception of "working" was pure placebo effect. Everyone thinks they aren't susceptible to the placebo effect, but that simply can't be true.

    It can't change until we have measurable markers...
     
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  6. Judee

    Judee Senior Member

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    But wouldn't that mean every time we send away for "the latest and greatest," it would work at least once for us if we were susceptible to placebo effect?

    What's discouraging for me, is that about 98.9% of what I've tried hasn't helped even on the first dose even when my hope level for it working is high. Isn't that "wishful thinking" some of what creates the placebo effect?

    So I do think there is such a thing as the placebo effect but I also think like the somatoform disease idea, doctors like to dismiss what someone thinks is working for them by saying, "placebo effect" rather than finding out why.

    Someone also mentioned scientifically why the Rituximab study may not have shown anything the second time but I do not remember where I saw here that on PR. However, what he/she said makes me think that maybe it still could work for some people with this disease.

    As for people getting defensive when someone says something helped. I always want to know what may have helped others.

    However I start to feel uncomfortable when they start to sound like its a "one size fits all" situation. Doctors dismiss so many of us because we don't fit a certain mould so I think it feels kinda deja vu like being in the doctor's office again where the fault is ours when something is not working the same way as so many others.

    And I change the page when someone puts a long post on "How I cured myself of ME/CFS."

    I'm much more inclined to read a post that has something like, "I'm in remission right now. Hope it lasts. Here's what I did."
     
    Last edited: Oct 20, 2018
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  7. geraldt52

    geraldt52 Senior Member

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    I don't think that is known. It's been demonstrated pretty clearly that the placebo effect is real, but the mechanism is a mystery. Clearly it doesn't work with all the people all the time, but often enough to muddy the waters. I think we all have to admit to at least being susceptible, or we're kidding ourselves. I doubt that the magic ingredient is wishful thinking. If I have a sinus infection for example, a particular antibiotic will work or not work without any regard to what I am thinking about it. The problem is, without markers for ME/CFS, any anecdotal report of something "working" is at the very least suspect. I do agree that doctors are a bit quick to invoke that placebo effect when they don't understand something.

    If there were no consequence to trying every "treatment" that anyone suggests, I suppose it would be a no-harm-no-foul situation. But virtually every treatment comes with possible negative health consequences, and some of them might be irreversible. I've become convinced, after my 35 years of battling this, that people, with the best of intentions, are making themselves sicker than they need to be...with drugs and supplements. But everyone has to decide for themselves what they can tolerate, and what they can afford.

    I wasn't knocking Rituximab by using the trial as an example. I even said that I don't think the trial told us anything about Rituximab, but told us a lot about the reliability of patient reports absent other evidence. I suspect that there is a subset of people with a diagnosis of ME/CFS who might benefit from Rituximab...but without a marker it's just Russian Roulette with a very expensive drug with some very serious potential side effects.
     
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  8. Wishful

    Wishful Senior Member

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    My experiences with testing things is that the results don't seem to have any correlation to how strongly I believe it will work or not work. According to the placebo effect, something that provides a drastic improvement (Wow! It really works!!!!) should continue working a bit longer, rather than fading by the second day, as some things have done for me.

    Maybe the placebo effect works best when the symptoms are at least partially somatic? Maybe some people build a minor symptom into a major one, and a placebo lets them ease off on the artificial enhancing of what they feel.

    I do admit that some of the reports of symptoms or responses to factors here do make me feel skeptical of them being real. We all have preconceptions and beliefs.
     
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  9. Judee

    Judee Senior Member

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    After 38 years with this disease, I agree with you on this but I have to admit to still being tempted to try things because I need to have at least some energy to do survival activities like eating and paying bills. Plus it's so difficult because even those things are getting harder as time passes.

    I try to be careful about it though. I try things one at a time and in tiny doses to see how I'm going to react. Plus, my my body and my budget can't handle too much experimentation anymore anyway.

    So it was you that I read on the other post I couldn't find. :)

    I pretty much agree with you here too. Thank you for responding. I think your comments are very wise.

    I desperately hope they find a diagnostic bio-marker soon.
     

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