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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Backlash from UnRest

Discussion in 'General ME/CFS Discussion' started by lllamamom, Jan 30, 2018.

  1. lllamamom

    lllamamom

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    So, trying to advocate for myself, I called a doctor to talk about being my GP and creating a possible treatment plan for the ME. I no sooner mentioned ME than I got yapped at, that "That darned movie is fiction, and has caused more trouble by making bored people think they're ill".

    After I recovered from the shock of such ignorance, I countered with WHO guidelines, NIH guidelines, NHS guidelines, and Mayo Clinic. Then I pointed out he'd never seen me. I actively worked on a ranch, picking up hay bales, running the tractor, taking care of animals, and running a successful business beside. I then also pointed out, because he was already on my LIST <G> that I had trained multiple years as a certified veterinary nurse, and knew how to state differentials.

    I didn't let him get another word in edgewise. I apologized for his ignorance of current medical trends, asked after his leeches, and hung up.

    I was afraid this would happen, darn it. Anyone else hit this concrete wall?
     
    flitza, alkt, pamojja and 24 others like this.
  2. lnester7

    lnester7 Seven

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    So “bored people”
    Mean that they are getting hit by non patients ( too many?) or the old patients calling back?.. would be interesting to know why you got a reaction. Are they bothered by the volume of calls?,,...
     
  3. lllamamom

    lllamamom

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    I suspect some of each. I also suspect he is one of the sadly high number of doctors that in years past denied the existence of CFS, condemning so many of us to the shadows. Why so many doctors refuse to expand their knowledge is beyond me.
     
  4. Mary

    Mary Forum Support Assistant

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    I saw a similar comment the other day. It's mind-boggling - truly - the depth of doctors' willful ignorance and stupidity. There's no excuse for this. It makes me wonder what exactly doctors are taught in medical school and how deeply are they brainwashed. It's nauseating to say the least.
     
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  5. lllamamom

    lllamamom

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    I can tell you from the vet tech point of view: the very good veterinary school near me is only now, despite years of evidence, exploring the use of essential oils, acupuncture, and other alternatives. When I tried to comfort an animal with a tiny sniff of essential oil about 10 years ago, I was told that it was illegal, useless.

    I frankly think much of the blame lies with insurance companies. "That's not standard treatment". How many of us, with multiple symptoms, end up going to multiple, multiple doctors, but not one puts the entire picture together to get an accurate diagnosis? Or the dreaded "that's not covered".....
     
  6. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Yet another example to support the use of audio (or video) recording of interactions with health care workers.

    Not just to capture the actual patient blaming for proof of negligence / ignorance / imcompetence, but in this instance, your awesome on-the-spot response.

    Its not so different from police officers wearing body cameras. The incidence of police brutality plummets. If health care workers were required to do the same (privacy concerns aside), the iatrogenic harm we experience would be much reduced.
     
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  7. Wayne

    Wayne Senior Member

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    Wow @lllamamom, kudos to you! :thumbsup: Could you go with me to my next ignorant doctor visit? ;):angel:
     
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  8. PatJ

    PatJ Forum Support Assistant

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    The doctor started a verbal knife fight without realizing that lllamamom was armed with a bazooka. :)
     
    alkt, Lisa108, lllamamom and 4 others like this.
  9. Kenny Banya

    Kenny Banya Senior Member

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    Cognitive Dissonance
    https://en.m.wikipedia.org/wiki/Cognitive_dissonance
     
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  10. lllamamom

    lllamamom

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    Sure! And as for being armed with a bazooka, PatJ, nah--just a handy flamethrower :p Through the years, either for the kids or myself, I've had to fight idiot doctors. I've gotten fairly good at snowing them, if nothing else. Start asking "what about ....." and use the TECHNICAL term, even if you had to look it up and write it down.

    I will credit a doctor the family had way back, when the youngest was just 4. After 8 ear infections in 4 months, I looked at him, said "this is allergies, I don't CARE what the scratch test said--it's often inaccurate if the stress is high". He sent her to an allergist that tested with drops under the tongue. BINGO! Got our answers, she got healthy. The doctor, bless him, then asked if I wanted to learn how to listen to lungs, check ears, sinuses, etc. Of course I said yes. I learned, advocated for the kids with schools and such, and probably scared a few folks because I only turned pale and shook AFTER everything was comparatively calm.
     
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  11. blueberry

    blueberry

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    Watching "Unrest" has done so much for me, it has validated my experiences, made me feel more confident in advocating for myself and has made me feel very angry about how I have been treated, but more how so many others have been abandoned to illness. I can imagine that if the film has had a similar effect on others, a whole lot of people are going to be getting a bit more assertive with their so-called medical care providers. Good.
     
    alkt, CatNap, Learner1 and 7 others like this.
  12. lllamamom

    lllamamom

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    I would love to start a "pen pal" club, if anyone's interested, so we have more communication, although Phoenix is wonderful! I wonder, you folks out there, how many are bedridden? Severely restricted? Can you drive occasionally? How far from town do you live? So many questions....

    For me, it hit literally overnight. Went from doing whatever I wanted to only getting the 100 yards to the barn at most once a week. Then the double vision hit, and there went driving. The exorbitantly expensive glasses with prisms in the lenses helped the vision.
    The part that confuses some doctors, I think, is that I'm not in my 20s or 30s, I was 64 when it hit, and it's been a slow slide down from there. Thankfully, I can still knit, and thanks to an electric spinning wheel, continue to spin, though it breaks my heart that my beautiful traditional wheels sit gathering dust.
    Hugs to all of you!
     
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  13. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    You could start a new thread to see if anyone is interested, but I would check with a moderator first regarding how to go about it in a safe manner. To message a moderator, find one of their posts, click their avatar, then click "Start a Conversation OR (easier) click "Report" at the bottom of your post above and ask for help.

    You will get more responses by starting a new thread and you can add a poll if you would like.
     
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  14. PatJ

    PatJ Forum Support Assistant

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    We discourage sharing personal information in the public forum because it can be misused by spammers. If a person wants to share personal information after considering potential drawbacks then the conversation system is more appropriate.

    @Sushi may have more to say about the penpal idea.
     
    alkt and CFS_for_19_years like this.
  15. Sushi

    Sushi Moderation Resource Albuquerque

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    I agree that it is pretty risky to share personal information or contact details on the open forum. You could, though, start a new thread in the Community Lounge asking about interest in a penpal group done through a group conversation. You could ask those interested to either say so in the thread or contact you via conversation and then you could start a group conversation. There is a maximum number of participants to conversations, but a moderator can over-ride that for you if needed.
     

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