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Countess of Mar joins Dr Myhill's campaign for a Public Inquiry into medical abuse of ME sufferers

Discussion in 'Action Alerts and Advocacy' started by Laelia, Apr 4, 2017.

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  1. Laelia

    Laelia Senior Member

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    I felt that this news deserved it's own thread!

    MAIMES is a campaign started by Dr Myhill calling for a Public Inquiry into the abuse of ME sufferers. This could be hugely beneficial to our cause and I hope you will all get behind this campaign!

    Dr Myhill has posted the following update on her website (13 March 2017):

    COUNTESS of MAR has joined MAIMES!

    She is very much on our side and we all know what a force to be reckoned with she is! Dr Myhill has been in conversation with Countess Mar and this is what the good Countess says of MAIMES:

    • “I am very impressed by your MAIMES campaign and would be very happy to support you.”
    • “You, very cleverly, have brought in other conditions like GWS and fibromyalgia, which is just what the doctor ordered! “
    • “It is high time that there was an inquiry.”
    The second point refers to Mar’s reasoning as to why previous such campaigns have failed. ME has been seen as ‘’too narrow’’ a subject for such a wide-ranging Inquiry. This may well be a wrong perception but we have to give ‘’them’’ what ‘’they’’ want to get the whole thing started!

    Countess Mar will be bringing MAIMES to the attention of the Forward-ME group at their meeting on 14 March."


    You can also see from the update on Dr Myhill's website that a long list of MPs have already been 'adopted' - 56 if I counted correctly. Given that the campaign was only launched in February 2017, this is already great progress. [Note: 'adopted' does not mean that these MPs have signed up to anything, but that a member of the public has signed up to meet them and explain the case for a Public Inquiry].

    http://www.drmyhill.co.uk/wiki/Medi...m_source=SocialMedia&utm_campaign=SocialPilot
     
    Last edited: Apr 5, 2017
  2. SamanthaJ

    SamanthaJ Senior Member

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    Health Secretary Jeremy Hunt and Theresa May are on the list of MPs. Which seems too good to be true. Well done to whoever got them to sign up!
     
  3. slysaint

    slysaint Senior Member

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    Very surprised and I confess a little suspicious to see Chris Grayling and Jeremy Hunt on the list.
    @SamanthaJ your post came up just as I was writing!
    (CG was responsible for some of the ESA regulations)
     
  4. SamanthaJ

    SamanthaJ Senior Member

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    It's very hard to imagine TM, JH, and CG are wholeheartedly supporting this. But I'd love to be wrong about that.
     
  5. Stewart

    Stewart Senior Member

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    I think you've slightly misunderstood. 'Adopted' doesn't mean that they've signed up for anything, but that a member of the public has signed up to meet them and explain the case for a public inquiry.
     
    NelliePledge, TiredSam, justy and 7 others like this.
  6. UKmum

    UKmum

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    Just checked the date on this but no- we are well past 1 April. Surprising list of supporters.
     
  7. SamanthaJ

    SamanthaJ Senior Member

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    Oh, ok! Thanks, that makes a lot more sense! Good luck to whoever's going to meet them.
     
    Jan, Jennifer J and Laelia like this.
  8. Laelia

    Laelia Senior Member

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    I had misunderstood this too Samantha! I might have to edit my original post to make this a bit clearer!
     
  9. Laelia

    Laelia Senior Member

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    Thank you for clarifying this Stewart, we were all getting a bit over excited! :)

    It's still very good progress though. I have added your explanation of what it means for an MP to be 'adopted' in my original post to avoid any further confusion!
     
    Jennifer J likes this.
  10. AndyPR

    AndyPR Senior Member

    I'm trying to see how this would get past the, to my mind huge, roadblock of the NICE guidelines? I don't want to put UK people off from taking advocacy actions, as I believe we desperately need them, but in looking forward as to how this campaign will play out, I can only imagine lots of MPs will point at the NICE guidelines, mumble something about "best scientific evidence" and then move on to something else.

    I am aware that the guidelines are due for review later this year, but I've seen nothing that confirms that the review will go in the direction we'd like - it's possible to me that all they'll do is add in a bunch of more recent BPS studies as additional info and claim that "best scientific evidence" still points to GET and CBT.

    Is there anything I have missed or should be viewing in a different way?
     
    Last edited: Apr 5, 2017
  11. lilpink

    lilpink Senior Member

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    I think that's misleading tbh. I think the website should only show MPs who have agreed to be part of the campaign. I have heard nothing whatsoever from my own MP who is mentioned on that list.
     
    arewenearlythereyet likes this.
  12. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Does anybody know how many pages the giveaway book is? I was going to buy it but it's £30 on Amazon! I'm wondering how many MPs would take the time to read it if it was longer than a few pages. There still doesn't seem to be a q&a fact sheet or anything else to help the adopters argue their case. It seems to assume people can read from chapter 1 to their MP whatever that includes.

    There are no mention of other recent medical research studies either, or the recent article calling for a retraction of PACE.

    The larger piece on the website is still poorly written with a slightly too hysterical tone for my liking

    This whole thing seems to have gone off "half cocked". I wish them luck with it but hope they don't ruin any future efforts by being disorganised and overly emotive.
     
    TiredSam, MEMum, trishrhymes and 2 others like this.
  13. AndyPR

    AndyPR Senior Member

    I'm seeing it for £13.48 hardback or around £4 for a Kindle version at this link http://amzn.eu/0e1rmKK.

    Just had a quick look at the preview and on the first page it starts talking about Big Pharma, which I can't see helping to make our argument with those MPs that we need to convince i.e. mostly the Tory ones. Far better we talk about the economic cost to the country of having so many people ill in my opinion, that's the sort of thing most of our MPs will take on board, rather than a Big Pharma conspiracy.
     
    justy, MEMum, Jan and 4 others like this.
  14. Invisible Woman

    Invisible Woman Senior Member

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    Absolutely. When you start to look at the true cost, both social and financial, to the state then it makes no sense to keep the suffers of such conditions in the "holding pattern" of current treatments.

    Ultimately, in my view, it needs to be about what comes first: the cost to the nation in the long term or the short term and extremely unfair savings to the benefits system and insurers. Although, in the long term developing effective treatments, if not cures, would also financially benefit insurers and the welfare system.

    Also research for these conditions and developing treatments could lead to new treatments for other diseases/ health issues.
     
  15. Laelia

    Laelia Senior Member

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    It is part of this campaign to get the NICE guidelines rewritten.

    Again, from Dr Myhill's website:

    "Campaign MAIMEs is a drive for a Government Public Inquiry aimed at:
    • Achieving proper recognition that this is a physical illness so that patients can properly access benefits and appropriate treatments. The abuses of PWME must be reversed.
    • Rewriting NICE Guidelines using evidence based medicine that is logical, biologically plausible and with a proper scientific evidence base.
    • Establishing that PWME should be treated by practitioners with specialised training in the physical causes of ME. These practitioners should include doctors, nutritional therapists and experienced patients." [My bold]

    (Not sure why it says 'and experienced patients' at the end of that last sentence? (!) )
     
    Valentijn, MEMum and Mary like this.
  16. Laelia

    Laelia Senior Member

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    Yes I agree, it is a bit misleading but I'm sure it was unintentional. The website does explain very clearly what it means for an MP to be 'adopted'.

    The reason this list of 'adopted' MPs is shown on the website is because once an MP has been adopted no one else can adopt the same MP, so it's necessary for this information to be public.
     
    justy, MEMum and Invisible Woman like this.
  17. Laelia

    Laelia Senior Member

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    There is a quite bit more than that to help them. Perhaps you only saw the 'simplfied overview' section? From the website:

    Convincing your MP

    Useful External Links

    You may wish to print these off and show them to your MP:



    Incorrect! See above links ;)
     
    Jan likes this.
  18. trishrhymes

    trishrhymes Senior Member

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    Exactly what my MP did when I wrote to him a few months ago. I doubt he did more than skim through my letter, see I was questioning the NICE guidelines and wrote a standard dismissive response.

    I do hope others have MP's who are more willing to learn.

    http://forums.phoenixrising.me/index.php?entries/letter-to-my-mp-about-magenta-and-nice.2014/
     
    hellytheelephant, MEMum, Jan and 4 others like this.
  19. Laelia

    Laelia Senior Member

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    If they do that then they are completely missing the point! ;)

    I appreciate that getting MPs signed up to this campaign is going to be incredibly challenging but we won't know if it's possible unless we try.
     
    Jan likes this.
  20. Laelia

    Laelia Senior Member

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    I agree, the piece on the website is far from perfect, but I think it's fine. It doesn't look particularly disorganised to me.

    I'm enormously grateful for Dr Myhill for initiating this. I hope others will the see the huge potential of a Public Inquiry into the medical abuse of ME sufferers and get behind this campaign!
     
    rosa, Barry53 and Jan like this.
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