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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Crappy GPs and NHS in the UK

Discussion in 'General ME/CFS Discussion' started by snowathlete, May 28, 2013.

  1. snowathlete

    snowathlete

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    I don't plan on going back there unless I'm on death's door for some reason.

    They wouldn’t write me a UK prescription to match the Belgian one that De Meirleir gave me. That I can actually understand, as they would be liable for it, but there was no effort to understand the problem, to look at my test results properly. She didn’t know what perforin was or interleukins...sure she's a general practitioner, but surely she should know that.

    No offer of any alternative, or to be send to any one else who might know what they are talking about. Nothing. Just sent home. An attempt to at least fake compassion wouldn’t have gone a miss either, in its place I got disdain.
    PhoenixDown, Bob, Clodomir and 2 others like this.
  2. Valentijn

    Valentijn Activity Level: 3

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    Well, DUH. What forum have you been reading, anyhow? :rolleyes:

    But yeah, it's a pretty typical way to get rid of the patient and their complicated issues: any tests not ordered by that practitioner should be ignored, and any problems identified should not be treated.

    Same shit, different day.
    Bob, Ema, snowathlete and 1 other person like this.
  3. Valentijn

    Valentijn Activity Level: 3

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    Jaded skepticism aside, can you try to get a referral to a specialist (immunologist?) who is capable of understanding the results and treating them? Persistence in getting your GP to solve the (important) problems can be very useful in getting referrals - if they know you won't shut up and go away until it's dealt with, they would FAR rather send you to someone else than deal with you themselves.

    My GP is freaked out about prescribing Strattera, so has been looking rather diligently to find me a specialist who can handle it. I didn't even have to mention a specialist for that issue ... she was eager to try to find one, and happy that we agreed with that plan :p Of course, my GP is a decent human being who believes ME is a real disease - your results may vary.
    snowathlete likes this.
  4. Sasha

    Sasha Fine, thank you

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    Sorry to hear you've had a bad experience with this.

    My GP isn't up on a lot of this stuff either but if I bring papers to him he'll read up and if he's not confident to prescribe, he'll refer me on. Do you think there'd be any mileage in asking for a referral to an immunologist?

    Alternatively, is it worth considering finding a new GP? Maybe even within the same practice? Do you know any local PWME who you could ask if they can recommend their own GP?

    Many years ago, my then GP told me that he didn't know anything about ME and since he didn't have many such patients, wasn't going to find anything out, either. Lovely! I switched to a doctor at another practice who had been recommended by non-ME friends and she did her best. Not the same as having someone completely clued-up but certainly not a roadblock to treatment.
    snowathlete and Valentijn like this.
  5. maryb

    maryb iherb code TAK122

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    snowathlete
    Oh dear you should have asked me - doesn't matter that KdMs a professor and we're in the EU - its a blinking joke. Now if it'd had been a UK professor they'd have jumped sharpish to it as the hierachy of the NHS is very very important to them and they know their place. (actually at the bottom)
    And as for knowing about perforin etc well honestly if its not a cold, the flu or a chest infection forget GPs.
  6. snowathlete

    snowathlete

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    yeah I expected it because of the way the system is, but I just expected at least to be offered to see a useless specialist, or a tiny tiny bit of compassion, or even neutrality....but no. Hate this country.
    Valentijn likes this.
  7. Mark

    Mark Acting CEO

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    Sounds like time to shop around for a new GP, they do vary greatly.

    A few years ago I saw a news item about the parents of a kid who went through more than 10 GPs before they found one who eventually successfully diagnosed his rare genetic disorder just in time to save him from dying.

    I do think it's necessary to be active in choosing your practitioner to get the most out of the NHS...the bar's obviously extremely low for us and finding one who knows anything at all about ME is a needle in a haystack, but finding one who at least treats you with a bit of respect shouldn't be impossible. I hope you manage to find one who'll process this prescription...even though I guess it's fairly likely you'll have to go down another route to actually get treated, it'll be worth it anyway if you end up with a half-decent GP.
    Valentijn, Bob and snowathlete like this.
  8. LisaGoddard

    LisaGoddard Senior Member

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    Such a shame especially with your test results, Joel, which show some definite things to be treated.
    Trying another GP is a good suggestion especially as you have some test results.

    I gave up going to my GP for my ME a few years ago despite the fact that I now have severe ME. My husband encouraged me to try again about a year ago and I got the 'polite, frozen' look from the doctor who didn't listen to a word that I said. Its hard!
    allyb, Bob and snowathlete like this.
  9. golden

    golden Senior Member

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    I cant find a G.P. that is any good...
    Going through a lot of G.P.s too means having additional and usually prejudiced comments building up on your medical record - error is built on error as G.P.s are swayed by what a previous Doctor has decided.

    Its a real problem.

    The Embarrassing Bodies (tv show) never seem to display the behavious that is rife behind closed doors... maybe they could help?!
  10. snowathlete

    snowathlete

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    I've got an appointment in two weeks with my regular GP, who I've only actually seen once or twice as my real regular doc moved on (two of them in the space of a couple of years) so I'll hopefully have some luck with at least getting referred to someone who might actually look into the immune abnormalities. Run their own tests or whatever. Looks like getting a prescription done would be unlikely though, judging by today's experience and previous visits to several of them at that surgery....and in either case, I dont really want to wait another two weeks.

    I guess I could swap GPs, but I'd have to go a few miles down the road, and I could do without that really.
    Valentijn likes this.
  11. Sasha

    Sasha Fine, thank you

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    Argh... sounds like you've got some plans in hand, at least. Good luck! Hope that goes well.
    snowathlete likes this.
  12. Ema

    Ema Senior Member

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    Or "same trailer, different park".

    allyb likes this.
  13. Bob

    Bob

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    Apparently it can be impossible for people who live in rural areas, because of catchment areas.
    I don't know if this has changed, or is changing, with the recent efforts to dismantle reorganise the NHS.
    allyb, merylg and snowathlete like this.
  14. ukxmrv

    ukxmrv Senior Member

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    I wasn't able to find a good GP at all in central London. Everytime I moved I checked out as many of the local clinics that I could.

    Professor Brostoff still impresses most of them I found. It was seeing him as a private patient and then him writing a letter to my GP (and it's on file) got me fair better understanding and respect. Prof B doesn't have a NHS clinic at the moment though that I am aware of.
    taniaaust1 and snowathlete like this.
  15. Shell

    Shell Senior Member

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    It's time to start taking cameras in to appts and putting them up on Youtube...
    allyb, taniaaust1, Valentijn and 2 others like this.
  16. taniaaust1

    taniaaust1 Senior Member

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    That is such an excellent idea as the general population doesnt understand the crap we go throu with doctors and specialists and the very poor attitudes or attention we receive. It would help people to understand why most ME/CFS people dislike many doctors
  17. taniaaust1

    taniaaust1 Senior Member

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    snowathelete.. sorry to hear about your treatment but Im surprised you thought you'd get a better reception from a doctor.

    Ive went throu about 35 doctors over the years, doctor after doctor.. trying to find a suitable one who would just "try" treating my CFS symptoms but without luck (note.. nearly all of them were country doctors who seem to be much more worst over someone having ME/CFS.. the reply I got over and over again was "CFS isnt treatable, we cant help"), I finally found one in a metro area who actually listened to me and wasnt in a hurry to get me out of there (but said she would only take me on if I was also under the care of a CFS specialist which fortunately I was).

    Someone I know with ME/CFS back on my old town still hasnt got a GP after 20 years due to the bad attitude towards ME/CFS (and unfortunately couldnt go to the GP who took me on as she didnt have a CFS specialist)

    I strongly suggest to not waste your time and precious energy trying out doctor after doctor (that's not good on ones stress levels either as after a time all those bad doctors will get to you) and rather instead find other ME/CFS people in your area and find out who they go and see. This is the only way I'd shop for a GP now. (seek them out online or put an add in your local paper to find others)
  18. snowathlete

    snowathlete

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    I have a little camera - i fitted it as a cat-cam a few years back to find out where my cat was disappearing to for hours on end. Maybe I could fit it behind a button or something..?
  19. Bob

    Bob

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    :cat: And where was naughty kitty disappearing to for so long? :cat:
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  20. snowathlete

    snowathlete

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    He was disappearing into a ditch and catching rodents in the drainage tunnel....perhaps thats where I got whatever Bartonella strain I have :sluggish: . They found one strain in Brown Rats in the UK which is fatal in humans.

    At night he was going to next door neighbours garden in taking shelter in the cat shelter that my neighbour had built for his own cats. His cats were coming in drenched because my cat woudln't share their home with them. lol
    Bob and Valentijn like this.

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