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Knitting Equals Pleasure, Despite ME/CFS
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Discussion with prospective new general practioner.

Discussion in 'Lifestyle Management' started by November Girl, Jun 17, 2012.

  1. November Girl

    November Girl Senior Member

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    My doctor has just retired, so I have the lovely task of finding a new doc. I know there are lots of desirable traits for a doctor, but I'm particularly looking for someone who can deal somewhat with my ME. This is the statement I've come up with. I'd love some feedback and suggestions for this.


    If a new patient comes in with diabetes, you have an understanding of what that means, and are familiar with the treatment approaches. You also know the myriad ways that patient’s body is likely to differ from that of a healthy person. This knowledge affects your treatment of any medical problem that patient has.


    I have ME (Myalgic Encephalomyelitis.) This is a chronic disease that affects most systems in my body. Research is ongoing as to the treatment of ME. But there is a large body of knowledge about the basic physiology of this disease.


    If I bring you information from credible medical sources, are you willing to read and consider the material? Will you consider my ME when treating other health issues that I have?


    If I bring you information from credible medical sources as to treatments for ME, are you willing to consider those treatments?


    What do you think? One thing I'm not sure of is the phrase "the basic physiology of this disease". I mean what's happening in the body, but am not sure this is the correct term.
  2. justy

    justy Senior Member

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    Hi November Girl. Sorry you are in the position of having to do this. Does your current GP have any recomendations?

    The first paragraph sounds a bit condescending. It presumes they know nothing about M.E/CFS. They may on the other hand know a lot and be sympathetic and then you may have alienated them.

    Are you intending to say this or show it to them? I would have thought a more relaxed discussion would be useful. When i had to last find a GP i asked him what his views where on M.E. From that i asked if he would be willing to work with me if i found things that might help. I explained that i spent time reading up on research and following latest developments etc and then judged his response to that. Luckily he was amenable (although not very useful) he has happily let me have blood drawn for free for private tests, monitored a trial of thyroxine etc.
    I also discussed with him that i had seen an M.E/CFS specialist and he was quite interested in her work and asked me questions about her charges etc so that he could mention it to other patients.

    Good luck with you search!
    Justy.x
    Ocean likes this.
  3. taniaaust1

    taniaaust1 Senior Member

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    I think what you have wrote sounds great but think that first paragraph without further explaination of where you are coming from.. could be taken as Justy said as being condescending by some doctors. Maybe if the whole thing was changed a little to explain where you are coming from more, it wouldnt sound as condescending??

    To say the same but be less condescending.. I suggest to take the words "you" out.... change . to "doctors" so it appears more as a generalised statement. You want the doctor to be mentally thinking "yes, yes" at what you are saying (being happy with that first paragraph) ... you want to get the doctor on side in a way.. to be open to you and respond well to the rest of your letter..

    eg
    If a new patient comes in with diabetes, doctors have an understanding of what that means, and are familiar with the treatment approaches. Doctors also know the myriad ways that patient’s body is likely to differ from that of a healthy person. This knowledge affects treatment of any medical problem that patient has.
    ....​
    I too find it far easier to do a letter to doctors about what type of relationship I want with my doctor and my expectations as far as ME/CFS goes. Talking face to face talking is far harder and doctors have sometimes told me along the lines of "yes I can help.". just due to the expectation that they are to help patients.. and not saying it with much real thought.​
    Many doctors after telling me they are fine with treating someone with ME/CFS, have later dropped me as a patient (or told me they no longer wanted me seeing them) as soon as they did realise what they were getting themselves into.. I even had one do that to me after 2-3 years :( (that one had lead me on making me believe he believed in an illness he really didnt.. he thought psychs could fix me but had made sure to keep his ideas from me.​
    When I started having to be refered to specialists who actually then were finding uncommon abbnormalities on recognised tests he then no longer wanted me as a patient.​
    His words "Your case is far too complex for me, I'd prefer if you found someone else" (and something about how he doesnt like seeing me).​
    The year before he actually come out and said this.. he was cancelling out a lot of my appointments, making me feel like a second rate patient cause he cancelled so many that had been made.. always with the excuse some emergency situation came up (so I kept on believing that and telling myself I was being silly thinking he may be treating me differently to his other patients). I now realise he was just trying to get rid of me. So many times I was very sick and needed to see him for something but had my appointment (sometimes one I'd had to wait a week or more) cancelled for various excuses from him. He even cancelled at least one of my appointments as there was a student doctor there observing things that day.​
    Others have dumped me as a patient as soon as they made severe mistakes due to their lack of ME knowledge eg doctor who called an ambulance as he couldnt believe the symptoms he was seeing when I crashed were ME/CFS. After that incident cause hospital discharged me the next day saying my symptoms were just ME/CFS.. he put on my notes he longer wanted to see me.. I think my condition scared him.​
    Ive had several incidents where doctors have dumped me just due to this condition rather then it being a case of me dumping them.. Irronically one of the doctors who dumped me had accussed me of "doctor shopping" before he took me on.. so I basically pledged I'd stick with him which I did for several years (if i didnt promise that, he wasnt going to take me on) ..but then in the end he dumps me due to "condition too complex for me".​
    When you send a letter to try to find out if they are going to be suitable for you.. you are drawing special attention to yourself that you have special needs .. making yourself more stand out to that doctor and hence making him pay a bit more thought to it all and his thoughts on ME/CFS and what he'd really be willing to do for you.​
    There is nothing worst when one puts so much energy into trying to form a good patient/doctor relationship (its hard hard work, finding all the stuff one needs to take in), only to end up having them dump you due to the condition they'd previously believed they could help you with and one they thought would be far easier.​
  4. taniaaust1

    taniaaust1 Senior Member

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    November girl.. also with giving any new doctor Im considering a letter of what I want. I also do ask them to tell me what they exactly believe about ME/CFS and what "they" believe causes it... that is a question I like to ask them face to face so I can try to also see their reaction and if they hesitate when answering.

    Thou the psych view ones often wont come out and say their views directly (and may even hide their thoughts from you like my old GP did)... others ive found will turn around and actually say something like the cause is unknown... or even that it may have a viral cause to it.

    Knowing where their head is on that all.. reallly helps when making choice for doctor.

    My current GP (a very young one) she straight out said to that question that "cause isnt known and that maybe even a virus could be involved". That was a big reason why I then have choosen to try her out (only issue was she said ME/CFS was too much for her to deal with so I'd also have to be under a specialist for the CFS. She directly told me she wouldnt have time to be really doing any research..but will read what I bring in. . I really liked her open truthfullness (after the deceptiveness of my last GP that is a real nice change).

    Really make sure the doctor isnt just willing to read things but also what their beliefs are on this.. eg are they really open?

    The doctor who believed this illness is in our heads.. he glanced at things I brought in or actually told me he'd read them later.. he just conned me.. he never had no intention of really paying much attention at all to anything I brought in to him. He had set views already hidden from me. The making out he was going to read things was all part of his act of making me think he was listening to me and paying attention to things.
    ....

    to your question physiology of the disease is understandable. :p i dont know thou how "basic" it is thou.. Is anything basic in this disease?
  5. SickOfSickness

    SickOfSickness Senior Member

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    I really agree with Tania, some docs will just pretend and not take you seriously. I would do the same, and like the doc who was willing to read what I brought. I also hate if they read but won't take action. Too conservative of a doc, too afraid to try anything new. They might come up with a reason why not to try what was in the article.
  6. Dreambirdie

    Dreambirdie work in progress

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    Hi November Girl--If I was you, I would consider doing an extensive search first, for possible new doctor candidates. And maybe expand that search to naturopaths as well. Often insurance covers these. I would want to know AHEAD OF TIME what kind of doctor I was going to be dealing with, before I approached him/her with a list of questions. Most doctors are totally clueless about ME and/or not really that interested in knowing more about it. So why waste your time on them?

    I agree with Justy's approach on the questions themselves. I would try a more relaxed approach and fish around to see what kind of responses you got from that. Maybe even ask the doctor if s/he doesn't work with ME, maybe s/he could recommend someone else who might know more about it and would be open to working with you on issues related to it.

    It's not an easy or pleasant task, I know. I wish you the best of luck with it.
  7. November Girl

    November Girl Senior Member

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    Thank you all so much. I'm too tired to say much tonite. several years ago I woul dhave had to hjave this in letter form, instead of a discussion, and it would have taken me several days to compose that much of a letter. if I could find the concentration to do so! I'll be seeing the doc taking over the practice of the old one. It's hard enough to find a doc who takes Medicare, and harder still to find one that takes my weird HMO version of medicare. Fortunately my ins. changes next year. it's 10 days til i see the new doc - will chat more later.

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