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Discussion in 'Advocacy Action Alerts' started by Bear, Feb 14, 2018.

  1. Bear

    Bear Established Member

    #MEACTION have put together an easy way for you to contact your MP to ask them to attend the PACE trial debate on Tuesday 20 February at 11am.

    It has standard wording that you can also tailor to your own circumstances.

    The debate will show how much interest there is in the topic and the more interest there is from other MP's attending the better.


    See this thread for fuller details:

    Jan, MEMarge, Indigophoton and 7 others like this.
  2. Andy

    Andy Committee Member

    Hampshire, UK
    Sent, finally, both by my wife and myself. The automatic letter generation thing didn't work for me but I was able to copy and paste it, so got it sorted eventually.
    Jan, MEMarge, Indigophoton and 4 others like this.
  3. MeSci

    MeSci Senior Member (Voting Rights)

    Cornwall, UK
    I can't even copy and paste it, so am part-way through it and have to rest!
  4. Sasha

    Sasha Senior Member (Voting Rights)

    I also struggled with the #MEAction thing and can see that others are too, so I've written a short letter that anyone can cut and paste into an email - you just need to put the MP's name at the top and your own at the bottom.

    It's here:


    @Bear, I wonder if you'd like to provide that link in your opening post, because so many people seem to be struggling. I've been putting this off for days because I couldn't cope with the complexity of the #MEA letter (no disrespect to its writer - these things aren't easy to do).
    Last edited: Feb 17, 2018
    Jan, MEMarge, Indigophoton and 3 others like this.
  5. Barry

    Barry Senior Member (Voting Rights)

    My MP is as useful as a chocolate teapot when it comes to ME, but I've given it a shot anyway:

    Dear .....,

    My wife and I are constituents of yours; my wife suffers from ME (myalgic encephalomyelitis).

    It would be immensely beneficial if you could attend this debate please, both for your constituents, as well as for your own appreciation of the true situation regarding ME; I think you might find it very enlightening and informative.

    The £5 million PACE trial was taxpayer funded, and strongly influenced current NICE guidelines – guidelines that are now having to be completely overhauled by NICE. The PACE trial’s poor methodology led to flawed treatment recommendations being applied throughout the NHS, to the detriment of many people with ME. Many of the world’s leading scientists now agree that problems with the PACE trial led to greatly exaggerated claims of treatment efficacy.

    It has also become clear that researchers had potential conflicts of interest that were not disclosed to trial participants, relating to the health insurance industry. There are even reported cases of patients’ health insurance pay-outs being conditional on undergoing inappropriate NHS treatments, where a PACE researcher had an advisory role with the insurance company, the NHS treatments originating out of the PACE trial of course.

    I believe this Westminster debate may be addressing conflict of interest issues.

    Once again, I think it would be of great benefit all round if you could sit in on this debate.

    Yours sincerely,

    Edit: Should have said, inspired by @Sasha's thread https://www.s4me.info/threads/uk-sh...he-carol-monaghan-pace-debate-on-20-feb.2468/

    Edit 2: I CC'd my email to Carol Monaghan. I used the same email title as @Sasha's example.
    Last edited: Feb 17, 2018
    Jan, MEMarge, Binkie4 and 9 others like this.
  6. MeSci

    MeSci Senior Member (Voting Rights)

    Cornwall, UK
    Jan, MEMarge, Binkie4 and 6 others like this.
  7. Graham

    Graham Senior Member (Voting Rights)

    I wrote to mine, but let's just say that the chances are somewhat slim.
    Jan, Andy, MEMarge and 5 others like this.
  8. MeSci

    MeSci Senior Member (Voting Rights)

    Cornwall, UK
    Same here. I gave it my best though, compiled over several days but hopefully not too long. Just looked and it is quite long though!

    "Please would you take the time to attend the above debate on Tuesday, February 20th from 11.00 to 11.30 am at Westminster Hall.

    My life has been wrecked by this illness, Myalgic Encephalomyelitis, since 1995, and there is little hope of recovery without urgent, correct research being undertaken. This has been prevented, for example, by the sham, government-funded, psychiatrically-based PACE Trial, the result of which has been more use of the appalling, damaging 'treatment' Graded Exercise Therapy (GET). All this 'treatment' does is make people worse, often permanently and considerably, rendering them incapable of walking, for example. Some people have been forced to undertake GET or lose all their benefits. Many suffer intense pain. Some, tragically, die, as life becomes unbearable.

    Yet it is still recommended by the UK research body NICE, who are, thank goodness, finally reviewing their advice under pressure, but it will take about 2 years. Meanwhile many doctors are still wedded to the seriously-wrong guidelines which have arisen. NICE still say on page https://www.nice.org.uk/guidance/cg53/chapter/Key-priorities-for-implementation:

    "Cognitive behavioural therapy and/or graded exercise therapy should be offered to people with mild or moderate CFS/ME and provided to those who choose these approaches, because currently these are the interventions for which there is the clearest research evidence of benefit."

    The film 'Unrest' illustrates the results of GET well, and I recommend that you see it if you have not done yet. It is available on DVD, and is directed by the US ME sufferer Jennifer Brea.

    The psychiatric lobby have gained a considerable foothold in this illness, which is entirely inappropriate and causes great harm, as it has done previously in other illnesses before definite physiological evidence was identified and confirmed.

    74 international researchers signed this letter:


    requesting the retraction of the Lancet PACE Trial recovery paper on 13 March 2017 - almost a year ago, for falsely reporting outcomes.

    I personally wrote to InterAction magazine in 2011 stating:

    "(please excuse errors):

    I am just skim-read your article about the PACE study on page 4 of the Spring issue of InterAction, and hope that your scientists will be producing a detailed critique of the study.

    A very quick look at the main study paper reveals a number of areas which merit question. For example, an overwhelming proportion of people initially approached to participate were excluded, and the expectations of those who did participate appear highly atypical, but concur closely with outcomes. The study sample may have been an overly self-selected sub-group. It is likely, for example, to have excluded people who have previously tried GET and experienced adverse effects, as in your own studies.

    Unfortunately I cannot spare the time to analyse the study thoroughly myself without remuneration, being a sufferer myself who is struggling to make ends meet and suffers severe adverse effects from over-exertion."

    I received no acknowledgement, let alone a reply. There was no detailed critique.

    There are estimated to be 250,000 people in the UK with ME, also known as CFS (chronic fatigue syndrome), and many are some of the most previously capable, hard-working people.

    It is vital that everyone possible learn about this illness, and pressurise those responsible to change and implement policy to put the correct facts and guidelines into place and into effect, so that we can have proper research and put an end to the suffering of so many people.

    Thanking you in anticipation."
    Binkie4, Barry, Jan and 4 others like this.
  9. Trish

    Trish Moderator Staff Member

    Well done, @MeSci, that must have taken a lot of effort and is well worth it. I hope your MP is receptive and attends the debate and follows it up.
    Binkie4, Barry, Jan and 2 others like this.
  10. MeSci

    MeSci Senior Member (Voting Rights)

    Cornwall, UK
    I doubt it, but thanks!
    Binkie4, Barry and MEMarge like this.

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