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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Plea to colleagues by doctor felled by ME

Discussion in 'General ME/CFS News' started by Countrygirl, Aug 10, 2017.

  1. dreampop

    dreampop Senior Member

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    Indeed, he only posted between 11pm-3am California time, Texas is an hour later even. Never before that, in the two days he responded. Odd for a 60 year old doctor. His response - I prefer not to answer. Saying if you still live in the U.S. or post late at night is not a big deal, private information to withhold.
     
  2. halcyon

    halcyon Senior Member

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    The 100k figure was how much he paid total for off label treatment with Rituxan, Cosyntex, and Enbrel as far as I could understand it.
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    This is how I understand it as well after re-reading it. I am confused though how as a doctor he did not get insurance authorization for any of these meds.
     
  4. aaron_c

    aaron_c Senior Member

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    Another issue--that I haven't seen raised yet--is simply that it was posted on Reddit. Posters on Reddit are often enough found to not be who they claim to be. For instance, they might be a patient pretending to be a former doctor in order to help the cause. If they had had a history of posting doctorish things on Reddit, or if they had chosen not to be anonymous that might have helped clear up this concern.

    As far as I can tell this kind of thing happens much more on Reddit than on PR, for whatever reason.

    In addition to that, much of what makes the doctor's post so noteworthy is precisely that he is a doctor. His former position contributes authority to his story. To the extent that his story is an argument from authority I think it's appropriate that the author's anonymity gives us pause. I would have the same skepticism had his story been "I am a doctor who had ME but I recovered with CBT/GET." Well, and some other questions.

    That said, I do hope they connect with other activists and/or patients, perhaps here. If they post more and readers get a feel for their medical expertise I think that the skepticism will evaporate. And I hope that they are well enough and inspired enough to "come out of the closet" and identify themselves--it would truly help all of us to have more physician-allies.
     
    Last edited: Aug 13, 2017
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  5. bombsh3ll

    bombsh3ll Senior Member

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    I am in the UK and not totally familiar with the US system, but I know insurance companies there have very tight criteria with regard to approving expensive medications and if he did not test positive for certain antibodies or have a condition on a defined list ie not ME it is likely to have been denied. He may well have known this and therefore not even gone through the process of trying to get it approved. It is an off-label treatment with currently poor results from clinical trials for ME in the US.

    Everything I have ever tried I have purchased myself, as the NHS doesn't offer any treatment for ME other than psychological/exercise.
     
  6. Jenny

    Jenny Senior Member

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    Depends who you see on the NHS. I've been able to try lots of treatments on the NHS.
     
  7. trishrhymes

    trishrhymes Senior Member

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    Interesting, I've never been offered anything except amitryptiline which makes me sicker. Do tell us more - what did you try, and did any of it help?
     
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  8. Jenny

    Jenny Senior Member

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    About 10 years ago I was referred to Dr Chee, an immunologist at the Royal Free Hospital. He was willing to look at papers I brought him, and we tried valacyclovir for 2 years, B12 injections, nimodipine, lyrica, duloxetine and isoprinosine.

    Also had quite a lot of non-standard testing, through him and through a haematologist at the Whittington hospital, which showed several immune system abnormalities.

    And I've seen GPs who have on request given me sertraline, amitriptyline, zopiclone, omeprazole, clonazepam, a large range of long-term antibiotics, tramadol and other strong pain killers.

    Other things too over the last 35 years that I can't remember. I've moved house several times and got through about 7 different GPs, all of whom have been very helpful as far as they were able.

    But of course none of this has helped - except for zopiclone, clonazepam and duloxetine.
     
    Last edited: Aug 13, 2017
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  9. arewenearlythereyet

    arewenearlythereyet Senior Member

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    You must be very charming that's quite an impressive list. Has any of it worked better than others?
     
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  10. Jenny

    Jenny Senior Member

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    As I say zopiclone and clonazepam are very good for sleep, and duloxetine for pain. Also tramadol was good for the severe pain I had a few years ago but I don't need that now.
     
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  11. trishrhymes

    trishrhymes Senior Member

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    Ah, OK, so you are talking about symptomatic treatments - antidepressant, pain killers, anxiolytic, sleep, stomach acid etc and antibiotics. I thought you meant more experimental drugs like antivirals or off label specialist drugs. I've tried examples of most of these symptomatic treatments too, and reacted badly to them all.
     
  12. arewenearlythereyet

    arewenearlythereyet Senior Member

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    The only pain killer that worked when I was really bad was naproxen ...my GP wouldn't give me more than 2 weeks worth. Luckily haven't needed it since but it was magic when I needed it.
     
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  13. Snowdrop

    Snowdrop Rebel without a biscuit

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    Naproxen is an over the counter drug here. You need a Rx in the UK?
     
  14. trishrhymes

    trishrhymes Senior Member

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    Just found this info for the UK.
    'Naproxen is available on prescription as tablets or as a liquid that you drink. You can buy it without a prescription from a pharmacy for period pain'
     
  15. Jenny

    Jenny Senior Member

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    Tried 2 years of valacyclovir and several weeks of nimodipine.
     
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  16. arewenearlythereyet

    arewenearlythereyet Senior Member

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    that counts me out then ...if I get really desperate I might have to wear @TiredSam s dress and try and pass myself off I suppose ?
     
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  17. slysaint

    slysaint Senior Member

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    I took Naproxen before I got ME for a back injury and it was great. Still had some left when I got ME, but it did nothing for the pain.
     
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  18. Snowdrop

    Snowdrop Rebel without a biscuit

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    Interesting. Here it's in a section along with tylenol and Ibuprophen. It's widely available.
     
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  19. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I guess it might depend upon where you get the pain? Mine was focused in knee and hip joints when I first got ill and this was pretty intense eye watering searing pain as oppose to the more generalised low key throbbing stuff I have now. I'm a mild moderate case though so maybe it's different at different stages?
     
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  20. Snowdrop

    Snowdrop Rebel without a biscuit

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    That's how I find it useful. My hips hurt when I'm trying to sleep from the pressure I expect because I'm in bed a lot. It doesn't completely resolve the pain but at least enough to get to sleep and often works well in conjunction with sleep meds.
     
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