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How do i educate my Doctor?

Discussion in 'General ME/CFS News' started by justy, Jan 4, 2011.

  1. justy

    justy Senior Member

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    Hi all, sorry if this is the wrong place to post.
    I am going to try the one last Doctor in my local NHS health practise to see if i can get anywhere with him.
    Some of you may already know that i have had a lot of trouble with unsympathetic doctors and this one ois my last chance. I dont expect help with resolving my M.E, but i have had no support at all from my GP's practice since i was diagnosed a year ago (have been ill for much longer though)

    I now need support with things like getting a blue badge, maybe a wheelchair for going out sometimes etc. My current GP has never even asked me what my level of disability is so he doesnt know that i have been mainly housebound for the past year.
    I was recently also refused antivirals for suspected swine flu as he says i am not immunecompromised like a cancer or diabetic patient. This was the final straw for me as we are considered high risk for recieving the vaccine (i didnt have it) as we have a neurological disease. I am also high risk as i have Asthma and had pneumonia and pleurisy followed by a 9 month infection in my lungs less than 2 years ago. I also have a fibrotic band in my lung (as shown on CT scan)
    My doctor has read the report from Dr.Myhill whcih outlines my mitochondrial problems and severe oxidative stress and high cell free DNA results but still treats me like i am just a nutcase.

    So, I am trying the last one i havent yet seen and if i get nowhere with him then its complaint time.
    My question is where can i find really good, brief and succint info on M.E for this doctor which also shows it has an immune abnormality profile? I know there is tons of research to back up what i say, but i am to ill to trawl it and collate it all for him.
    If it is U.K centric then so much the better and anything from the NHS would be marvellous
    I just want to present him with maybe 1 or 2 pages at the most to back up my claim that it is a real illness and that i need to be taken seriously and given help. I know the NICE guidelines are really awful, but even they say i should have a care and management plan - which has never been mentioned let alone offered.

    Thanks. Justyx
     
  2. Esther12

    Esther12 Senior Member

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    Hi Justy.

    One thing to mention is that Myhill is currently having trouble with the GMC, and is not licensed to practice medicine. I wouldn't place to much emphasis upon her work with your GP. We don't know what causes ME, or how to effectively treat it. If you go in there acting certain that you know the cause, then that could make your doctor more likely to dismiss you as an unreasonable patient.

    Really though, they shouldn't need to know the cause of your problems in order to respond fairly and help you with blue badge, wheel chair etc. I think the NICE guidelines mention that mobility aids may be useful (?).

    If you're looking for a really rock solid explanation of ME, I don't thikn you're going to be able to find it. Sorry not to be of more use, but hopefully all will stll go well with your GP.
     
  3. justy

    justy Senior Member

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    Thanks Esther, no i havent placed too much emphasis on my test results form Dr.Myhill, also he saw then a long while ago, before she had her license suspended.
    Im not looking for an explanation of what causes M.E, but just a decent synopsis of the different things that have been shown to be going on(or not) in the body. I need back up so that i can recieve the correct medical care if i get something like flu or pneumonia again. Also just to be taken more seriously i guess.

    Im definately not looking for the cause of my problems ,i know i wqont get that from the NHS and i dont expect it at all. I just need them to take me seriously so that i can get them on my side for help with things like wheelchair. At the moment everything i say gets dismissed with well your not really that ill like our other patients with htis or that disorder when they have never once actually taken the time to find out how ill i am, they have never asked me about symptoms, quality of life etc.
     
  4. Esther12

    Esther12 Senior Member

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    Ahhh.... they think CFS cannot be a serious problem.

    I wasn't able to check the NICE website, as it says it's down for maintanence at the moment, but there could be useful stuff there for you. Here's the NHS choices site, and it talks a bit about severe CFS: http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx

    Really, for such basic stuff, you should be able to get support from any of the NHS's CFS resources.

    Sorry to hear you've got to explain points like this to them. Good luck with finding something appropriate.
     
  5. justy

    justy Senior Member

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    Thanks again Esther, i will give them a look over and might make up a word doc with the salient points - they can hardly ignore their own advice!
     
  6. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    For the pathologies, a brief overview can be found in the Pain Practitioner: you can print it from this link:
    http://www.cfids.org/about-cfids/pain-practitioner-spring2010.pdf

    Also, drop me a private message with your email if you would like my collection of annotated research (overview of pathology, refutation of deconditioning myth, refutation of psychosis myth, severity, potilicization problem). It is in Word documents which you can edit to the length desired.
     
  7. medfeb

    medfeb Senior Member

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    Justy,

    I found this pamphlet style overview of CFS that might be useful to you. It describes the areas of research including immune dysfunction. The group that developed the pamphlet is Canadian but the site indicates that it has also been distributed in the UK

    http://www.mefmaction.net/Portals/0/docs//What is ME-CFS.pdf

    Good luck!
     
  8. lancelot

    lancelot Senior Member

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    it'll be very difficult to educate your doctor whether in the US or UK. i would look for one that has some knowledge or a specialist. all my PCP knew was that it was a very serious illness and he thought it was a virus. i had to bring in books by KDM and Teteilbaum in order for him to pick the right meds for my symptoms. my PCP didn't know what to prescribe me because other misinformed doctors hurt me very badly with meds like SSRI's. We were able to work together to choose the right meds for me but it took alot of our time and patience that most docs do not have.
     
  9. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    could you mention the titles of those books, lancelot?
     
  10. lancelot

    lancelot Senior Member

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    only if you blow me a sweet kiss!
     
  11. lancelot

    lancelot Senior Member

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    MUAH!!! 1) Journal of Chronic fatigue Syndrome vol 11, number 1 2003 by KDM 2) From fatigued to fantastic by jacob teitelbaum.

    both books have alot of drugs and symtoms list that can make picking drugs for your symptoms much easier.
     
  12. SOC

    SOC

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    Thanks for that link, medfeb! I missed that somehow. I, too, am soon to be meeting with a new primary care physician and have been dreading trying to explain ME/CFS. This brochure will be a big help.
     
  13. justy

    justy Senior Member

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    Thanks everyone for your replies, some useful stuff here!
    lancelot - im afraid the system doesnt work like that here. Under the NHS you have a GP who refers you on to consultants - i couldnt just pick my own. I cant change GP practices as i live in a remote rural area and there is only one. I also live in Wales which has NO M.E specialists or specialist services. The only way to do it as you suggest would be to see a privatew doctor and would mean hundreds of pounds and hours of travelling every time i needed to see a doctor. I dont have private medical insurance - only the very rich do, and then they dont use the NHS at all - but normal folks like us have to. I dont mind about the drugs though. I dfont take any apart from asthma meds since i had a horrendous reaction to an SSRI. I prefer to do it all naturally and seea herbalist instead.
    Thanks for the book suggestions.
     
  14. justy

    justy Senior Member

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    Thank you Medfeb, this is a great leaflet. I think i will print some out for my family and friends. A good all round explanation of the whole situation. I will be giving one of these to the new GP too.
     
  15. free at last

    free at last Senior Member

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    let us know how you get on Justy,and if any of the info you provided helped change hes mind, personally i would want him to read The latest wpi letter, but that may be counter productive,Judy offered to speak to my gp, but i said no, becaue british gps for the most part are self rightouse mislead sheep, who dont like being told how it is.Everything Judy may have tried.
    Good luck Justy if you get no where, dont accept this crap and complain, Might be worth contacting proff hooper if you lodge a complaint, hes a good guy, he might help, and may be interested in there response tc
     
  16. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    You know, I cannot find one of those in the list. :angel:


    Ok, thanks much! :peach: Do they talk about testing for pathogens, by any chance?
     

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