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How to get Biomedical research results before GPs and Consultants?

Discussion in 'General ME/CFS Discussion' started by Janice Hargreaves, Jul 12, 2017.

  1. Janice Hargreaves

    Janice Hargreaves

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    I was thinking about this issue and had a sudden Eureka moment.... WE ALL (us the patients!!) can get it in front of our GP's and whatever Consultants we get to see. This might be a bit UK centric I'm afraid. Plus a bit long. Apologies to all but I'm interested to hear your views.

    They then can't decide not to read it or look the other way. We're there in front of them in a non threatening and logical way.

    This probably sounds like I'm trying to tell "my Grandma how to suck eggs" but it had never occurred to me before...........I'd always felt I wouldn't have been able to get the ideas over in a coherent and unemotional way. I have been frustrated, angry and my sense of injustice has been getting in my way for years......to be honest decades!
    So last Monday, after constructing my cunning plan for my 10 minute consultation with my GP , with a little bit of "Sod it. What have I got to loose?" thrown in, I was determined to "Ask the difficult questions" which my daughter reminded me I'm good at. As it happened, earlier that day my GP had left a message for me to tell me the CCG had turned me down to enable me to be referred to Dr Bansal in Surrey to try and get immuno-modulation treatment.
    So my tack was the first thing I said was something along the lines of me not being angry with him I'd been turned down, I realised it was just the system. Then went onto asking for my long standing label of CFS to be removed so I wouldn't have to get past NICE. I pointed out having done all the CBT, GET, life style changes, yoga,meditation, etc etc for years and years, that I still had the same symptoms I started with 18 years ago following glandular fever. My logic suggested to me that maybe the label was wrong. What did he think? Upshot at the mo is he swabbed my throat...... first time ever! But he refused to get them tested for herpes viruses............I've no idea why not. He muttered something about no clinical symptoms even though there are easily visible spots at the back of my tongue which I'd explained are there permanently and become more red and sore the more I try and get on with my life. Plus he's referring me to Cardiologist. I had been before 8 years previously, so this gave me the chance to say I didn't want to be referred to certain cardiologists because previously they had treated me as if I was a lazy, neurotic, attention seeking , hypochondriac. I preferred to see a particular Cardiologist who has previosly shown some curiosity about why having followed the NICE guidelines I was still unable to work, enjoy much time with my family and still had many of the symptoms I had started with.
    Who knows what will happen now. I just hope I don't get men in suits turning up in a black maria and I then disappear into the horizon!? I've obviously been reading too much John le Carre thrillers.
     
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  2. trishrhymes

    trishrhymes Senior Member

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    Well done. Do keep us posted. Did he agree to remove the CFS diagnosis from your notes?
     
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  3. Janice Hargreaves

    Janice Hargreaves

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    No. However I have an appointment to see the senior partner in the practice in mid August to discuss? Ho hum.
     
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  4. trishrhymes

    trishrhymes Senior Member

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    I like your logic, using the NICE guidelines to say I've done what they recommend, didn't work, so diagnosis must be wrong. Since CFS diagnosis seems to be being used as an excuse to deny us further investigation, that's clever. I wonder if it will work with the senior partner.

    If they actually read the guidelines they will spot the flaw in your argument, since I suspect the guidelines describe CBT and GET as management strategies, not as cures.

    I look forward to hearing what happens.
     
  5. Janice Hargreaves

    Janice Hargreaves

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    Many thanks for the encouragment.
     
  6. Skycloud

    Skycloud Senior Member

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    Have some encouragement from me too :) I'd like to know how you get on with the senior partner too.

    I've been considering a frank conversation with my newish GP (my old one retired) but I'm not ready for that yet.
     
  7. charles shepherd

    charles shepherd Senior Member

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    We still have funds in the MEA medical education department to send a free copy of the 136 page MEA purple book (which summaries all key research findings and has a reference section containg 600 key research papers) along with fully up to date information on clinical assessment, diagnosis and management of ME/CFS to your GP or hospital doctor

    More info here:
    http://www.meassociation.org.uk/shop/books/mecfspvfs-an-exploration-of-the-key-clinical-issues/

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  8. Janice Hargreaves

    Janice Hargreaves

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    Wow, that could be brilliant. Could you send it to the ......do I need to keep schtum about where I'd like you to send it? Maybe not helpfull?
    Thanks as always to Dr Shepherd.
    Just looked at the link so have put the details there. Brilliant.
     
    Last edited: Jul 13, 2017
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  9. Janice Hargreaves

    Janice Hargreaves

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    I thought I'd give update on my attempts to get GP practice updated in their approach to ME patients.

    I saw senior partner yesterday. In between I'd seen a CFS specialist in Surrey as a private patient since CCG wouldn't agree to fund it. The specialist has prescribed anti-virals and a few other low dose mito support supplements . The specialist also wrote to my GP recommending B12 injections.

    Therefore the target of my 10 minutes was to get a treatment plan based on specialists recommendations.
    I decided to start with asking if he had received the MEA Key Clinical Issues 2017 booklet (many thanks to Charles Shepherd for organising this= very helpful). His answer was yes but didn't look too pleased.
    This made me realise I needed to tread carefully and try not come across angry. I let him know I felt there were various pieces of information which might be very helpful in moving forward in this controversial disease.

    I asked if he was aware of the NIH and IOM 2015 stance on the reality of what ME is, he hadn't . So I briefly explained how in US they've removed the GET part and are totally clear that ME is not a psychological issue.

    Then I asked if he had heard about the PACE trial, again he hadn't so I briefly explained about hoe the SF36 outcome measure was changed half way through trial, how when data was eventually released for independent review, that the conclusions were along lines of how the data did not support the recommendations, his eyebrows went up at that. So I mentioned Dr Keith Geraghty and Caroline Wilshire if he was interested to look them up. Also how The Journal of Health Psychology has a whole issue this August on the problems about PACE.

    Then I told him briefly about the 2 day cPET test done in early 2000s which compared normals, ME, depressed and MS patients. I explained that on the 2nd day, ME patients showed a 20% decrease in ability to work. All the other groups had a slight increase in work. Again his eyebrows went up.

    End result is that if the specialist recommends further anti-virals in 3 months time, he has agreed to go with that.
    However unless my B12 levels are outside of normal range as in pernicious anaemia, he will not be able to agree to B12 injections.
    So I asked him would he have a problem if I was to buy the IV B12 myself and inject myself, his reply was fine if I was fine.
    That's the first time since 2004 I seem to have a treatment plan.

    Then I heard about the Daily Mail piece. How brilliant.
    I do hope more patients will now raise the topic.
     
    Last edited: Aug 16, 2017
  10. trishrhymes

    trishrhymes Senior Member

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    @Janice Hargreaves , could you go back and edit that post by breaking it up into short paragraphs with gaps to make it easier to read on screen. Thanks.
     
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