International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Dealing with disbelieving doctor

Discussion in 'ME/CFS Doctors' started by lllamamom, Jan 26, 2018.

  1. nanonug

    nanonug Senior Member

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    I agree with the doctor, "ME" is not a justification for stool or SIBO tests. Having terrible constipation, terrible diarrhea, terrible gas or terrible bloating would be. People need to be smart when going to the doctor with the intention of asking for a specific test by presenting a plausible, easily understood justification. This being said, I don't condone lying to the doctor.
     
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  2. Learner1

    Learner1 Forum Support Assistant

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    Research has linked a disturbed gut microbiome to ME/CFS, so it's a valid request. And you don't necessarily need gut symptoms to have a problem - I was celiac for years without gut symptoms, just had symptoms everywhere else. .

    Having a few other things measured, too, would be useful.
     

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  3. nanonug

    nanonug Senior Member

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    Microbiome disturbances are highly non-specific for SEID. Crappy diet alone will lead to a screwed up microbiome. Even if the doctor ordered a GI Effects Profile (or equivalent) which then showed a disturbed microbiome, then what? In any case, I apologize for not properly conveying the gist of my message which is: "People need to be smart when going to the doctor with the intention of asking for a specific test by presenting a plausible, easily understood justification." Here is an easily understood justification for a blood test for Celiac disease: "every time I eat stuff with gluten, I feel like crap."
     
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  4. ChrisD

    ChrisD Senior Member

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    [QUOTE=""People need to be smart when going to the doctor with the intention of asking for a specific test by presenting a plausible, easily understood justification." [/QUOTE]

    This is true, it was really a side not in my appointment that I suggested this and maybe not worth bringing up in this thread. Prior to that I asked for a full Thyroid panel as well due to a history of thyroid illness in family and also thyroid symptoms that occur and overlap with ME, but he said that it as unlikely a problem as it ''mainly affects middle aged women''.

    My point here in this thread is that the attitude of the doctors is very narrow minded and non-investigative, with no awareness of illness overlap and features that occur between illnesses, they have a set opinion that ME either doesn't exist, is Psychological or does exist but there is no clinical backing therefore they wipe their hands of you. There are some National health doctors in the UK who are prepared to take a more forward thinking approach i.e. stool tests etc.

    I guess I'm not providing anything new here and everyone has experienced this already (including myself), I'm just adding to the argument and expressing my surprise when usually my mind is in a really progressive and forward thinking space (These forums, twitter, the recent media after 'Unrest'), so stepping into a Doctor's office is a step back in time.
     
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  5. Learner1

    Learner1 Forum Support Assistant

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    Then, you kill the parasites, get rid of the candida, and use insoluble fiber, changes in diet, and specific probiotics yo manipulate your microbiome. Difficult to do without any data to go on.
    A blood test won't necessarily tell you you have celiac disease. And if you are celiac, its not necessarily an immediate reaction, in many cases its a cumulative effect over time as villi get damaged and nutrients are poorly absorbed.
     
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  6. nanonug

    nanonug Senior Member

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    @Learner1, again, you are missing the point of my message. It was not to discuss specific diagnostic tests, but to advise on how to approach a doctor when requesting such tests.
     
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  7. Learner1

    Learner1 Forum Support Assistant

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    Yes, but you're giving inaccurate information. That was my point.
     
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  8. nanonug

    nanonug Senior Member

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    No, I'm not. There is no evidence that testing for and "manipulating the microbiome" in the ways you propose (which I've done extensively because of my IBS-D) or testing for/addressing SIBO (which I've done, because, again of my IBS-D) will have any effect on SEID. In any case, I'm done here.
     
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  9. Learner1

    Learner1 Forum Support Assistant

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    Its still in its infancy, but manipulating the microbiome can dramatically affect function. My daughter is a PhD candidate researcher working in microbiome research. You might also want to check out Ken Lassesen's blog:

    https://cfsremission.com/

    I don't agree with him that its a cure for SEID in itself, but I don't believe we can be cured without improving our microbiomes.
     
  10. MEMum

    MEMum Senior Member

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    This is true, it was really a side not in my appointment that I suggested this and maybe not worth bringing up in this thread. Prior to that I asked for a full Thyroid panel as well due to a history of thyroid illness in family and also thyroid symptoms that occur and overlap with ME, but he said that it as unlikely a problem as it ''mainly affects middle aged women''.

    My point here in this thread is that the attitude of the doctors is very narrow minded and non-investigative, with no awareness of illness overlap and features that occur between illnesses, they have a set opinion that ME either doesn't exist, is Psychological or does exist but there is no clinical backing therefore they wipe their hands of you. There are some National health doctors in the UK who are prepared to take a more forward thinking approach i.e. stool tests etc.

    I guess I'm not providing anything new here and everyone has experienced this already (including myself), I'm just adding to the argument and expressing my surprise when usually my mind is in a really progressive and forward thinking space (These forums, twitter, the recent media after 'Unrest'), so stepping into a Doctor's office is a step back in time.[/QUOTE]


    So sorry @ChrisD that you got this response from the GP. It seems inconceivable to people who have looked at PACE, IOM report etc that docs are still under the psychogenic spell.
    I have realised in the last few years that until the PACE " wall" is blown away there will be no significant progress in the UK. I do feel that change is coming with Unrest/David T/Westminster debates etc, It is still far too slow, but EC removal from CMRC and her reassignment away from ME is great progress.
     
  11. Sundancer

    Sundancer Senior Member

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    disbelieving doctors are soo bad...:mad:

    about SIBO, i'm pretty sure I have SIBO, but is an unrecognized condition over here. Doctors do not know what it is and thus don't test for it. Some natura-therapists do know what it is, and can get tests for you, but you've gotta pay for that all by yourself...,,
     
  12. Learner1

    Learner1 Forum Support Assistant

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    We pay where I live, too. I think it was about US$99.
     
  13. Thinktank

    Thinktank Senior Member

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    For the past 8 years i've been mostly living abroad and seen many doctors. Recently i have decided to return back home so i had to collect and neatly organize all medical records from my time abroad.

    I took the records to my GP to make a plan of action because my health has been deteriorating. He was disbelieving from the start, the turd didn't even look at my medical records which took me weeks and much effort to collect and organize. I've many diagnoses which really need to be recognized and validated in my homecountry, otherwise they won't know what to do with me in a critical situation. The only referral he gave me was for a gastroenterologist and neurologist, but i need to see so many more!

    This is exactly the reason why i decided to have my medical checks done abroad instead of my homecountry, it's the same shitshow all over again. What's the use to keep trying? I'm almost at a point that i want to give up.
     
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  14. Stretched

    Stretched Senior Member

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    @Thinktank They are the worse, here in U.S. as well. You have to become your own advocate and decide a practical course of action. I, like many others have resorted to doing our own treatment through online pharmacies after researching the specific ailment. (In many instances the best treatment is none!)

    Doctors are just guessing when they treat CFS and it’s symptoms. Many of them won’t even treat CFS patients! That’s why there’s a plethora of research underway, which is referenced in the journals that doctors skim through. You can do the the same research on a number of sites. Start with Googling ‘CFS Research.’ Then get to specific areas of interest. There’s almost enough information on these forums to prepare you for treating most CFS symptoms.

    Doctors are aware of the big gaps in ineffective CFS research, so why would they want to study a compilation of others’ guesswork? It’s a catch-22 dilemma.
     
    Last edited: Apr 25, 2018
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  15. alkt

    alkt Senior Member

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    I recently watched a video by dr Byron hyde I think his explanation of why many doctors are absolute dicks when it comes to complex diseases is the most logical. it simply comes down to money they are not paid for all the extra time and effort required to help patients with any kind of complex illness. also in nationalised medicines many are just to weak to stand up for the best interest of their own profession or their patients .my own g p will not even write letters of support for patients dealing with the d w p. so if they behave badly it scares away the patient and they are no longer a problem or financial burden on their practice.
     
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  16. Stretched

    Stretched Senior Member

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    @alkt Well said, I couldn’t agree with you more.

    If the general public knew what many of us PWCs know about GPs there would be an outcry to have their licenses revoked,
    or minimally, an institution of a testing system for a higher level of proficiency. (I will probably end up dying, of some random cause, because I think so lowly of these rascals.)
     
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  17. lllamamom

    lllamamom

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    Well, went to my GP yesterday for my annual. After I had a rather major crash in January, she asked for information and I was hopeful. Okay, so maybe I gave her to much solid information--the 2018 research from MeAssociation, plus two articles mentioned here. I thought, since she had said she was interested in research, that there was a glimmer of hope.
    Nope
    When I said that during a recent trip, I had to use a wheelchair, she got upset, and later in the exam, commented that I "really need to get back working toward the minimum 10K steps to stay healthy". I pointed out that if I did that, I'd be in bed. The discussion deteriorated from there, me being basically unable to break through her perception that I needed to exercise more. She ordered blood work, and I noticed she ordered a magnesium panel. Sigh. So she's bought into "it's just a magnesium deficiency", but won't listen when I tell her I TAKE magnesium.

    Another one for the Cheesus list. I give up
     
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  18. RWP (Rest without Peace)

    RWP (Rest without Peace) Senior Member

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    So sorry again for you! You tried your best.

    We both see the same doctor (not ME specialist) soon. We're coming prepared with the latest research. She's been improving steadily re: understanding the damage of activity, but still hasn't mentioned watching Unrest after I sent it to her.

    Recently, this article http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0159386
    was mentioned on this post: http://forums.phoenixrising.me/index.php?threads/readers-digest-gets-it-about-me-cfs-and-exercise.59118/#post-975194.
    It studied neuromuscular strain from passive (in)activity. Not sure how powerful the punch is, but it's there.

    RWP + PWR
     
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  19. RWP (Rest without Peace)

    RWP (Rest without Peace) Senior Member

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  20. starlily88

    starlily88 Senior Member

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    So very true. When I first got CFS/ME - I was working very hard long hours - never went to drs - so went to guy in my building - somehow he thought I had MONO - did monospot test - sent me for Endoscopy/Colonoscopy - I did have 3 ulcers at bottom of stomach - and before putting me under - the dr said - oh, you have MONO.

    This plain ordinary but very bright GP - decided he was going to study CFS/ME - he called Dr. Goldstein in San Francisco, bought his books - he was so upset that I had a great career, great education - and then nothing??
    He could not accept this - he even fought my work disability that wanted me for full days - to try to prove I wasn't sick.

    I would hear him on the phone yelling at them - he was fantastic.
    He did not care how much time it took him - this was a challenge to him - there are no drs like that anymore.
    Of course all the 12 original CFS/ME drs - were like him - and there are the Amy's in Maine, and Dr. Kaufman.
     
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