From @Joan Crawford, on the thread about the PACE briefing document: Great document. Good tone. I'll encourage Chester MESH members to write to their MPs and include this document. I got this tip off from Forward ME member: Carol Monaghan MP can be limited in what she can do/achieve for patients who are not her constituents so patients need to let their own MPs know about harm caused by PACE style CBT/GET via their own MP and cc Carol Monaghan. That way she can then work with other MPs to build on this. I'm encouraging patients to do it this was to be as effective as possible Thanks for the tip, Joan! I thought this deserved its own thread.
There was a call for a template letter on that other thread, so here's my attempt. Others should feel free to add theirs so that there's a bit of variety - but bear in mind that MPs are busy, so the shorter the better. Let's have a bit of discussion about whether I've got the template right before anybody sends it, though! Am I asking for the right thing? Have I left anything out (bearing in mind that it's meant to be a quick request that will get read, not a tome that won't). [Edit: link to the Hansard transcript of the Westminster Hall debate added, at Andy's suggestion.] You can personalise my template with a few details about how long you've been ill or how ill you are, but you don't have to - it's ready to copy and paste into an email just as it is. If you're well enough to actually see your MP to push the point home, you could add a request for an appointment to your email. ******* Subject line: Please support Carol Monaghan MP's call for a debate on the PACE trial Dear X, I am one of your constituents and have myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome, or CFS). I'm writing to ask you to support Carol Monaghan MP's call for a debate on the PACE trial in the House of Commons. The PACE trial was an influential, £5 million, taxpayer-funded clinical trial of graded exercise and talking therapy for ME/CFS. Its results were published in 2011 in The Lancet and were presented as showing that its treatments were moderately effective and led to recovery in a fifth of patients. Because of it, NICE continued to recommend these therapies in its treatment guidelines. But the trial had very serious flaws, which are now widely recognised - but the PACE researchers and the scientific journals that published the results have failed to correct or retract the results. Reanalysis by independent researchers shows that no patients recovered due to the therapies, and that the results are consistent with talking therapy and graded exercise having no effect at all. Meanwhile, surveys of ME/CFS patients undergoing graded exercise show over half reporting harm from it, including children. Some report becoming bedbound. Patients urgently want graded exercise in particular removed from the NICE guidelines, to protect themselves and other patients. Carol Monaghan said in a debate on PACE in Westminster Hall on 20 February this year, 'I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century.' I agree, and if you read the attached briefing document, I think you will too. Please join with Carol Monaghan in calling for a full debate on PACE, and help support the interests of patients like myself and 250,000 more in the UK. Yours sincerely, XX ******* And now, my brainfogged friends : 1. Find your MP's email here: https://www.parliament.uk/mps-lords-and-offices/mps/ 2. Cc Carol Monaghan: carol.monaghan.mp@parliament.uk 3. Attach the S4ME PACE briefing document. That's it!
I personally think it looks good Sasha I did wonder whether it might be good giving a link to the previous debate? That might be the only thing I might change.
Thanks, Andy. Do you mean a link to the Hansard account? Or the TV recording (if there is one - I can't remember)?
Was thinking of the Hansard version. Transcript - https://hansard.parliament.uk/commo...-4566-940D-249F5026FF73/PACETrialPeopleWithME Video - https://parliamentlive.tv/event/index/cf2fde9d-f327-4bf4-8e72-1fc6124b8998?in=11:00:54
In case anyone wants to look back at the Westminster Hall debate, here's the set of links from the Weekly News in Brief: UK Parliamentary debate MP Carol Monaghan led an excellent Westminster Hall debate on the PACE trial, Tuesday 20th February. Debate here Debate transcript here Thread here Follow up action thread here MEA article here Thread on MEA article here Edit - crossposted with @Andy.
It is important though to ask folk to add something of their own to the letter. MPs get a lot of emails, and can just skip over standard copies. If you really want to make an impact - write. Half a dozen people writing to an MP will really wake them up to the problem.
3 of us from our local M.E. Friendship group have an appt to see our MP in a couple of weeks, following a letter we sent for us all. We are hoping for support as he is on the APPG for Lyme Disease, so have tried to link in with the number of mis diagnoses of the one illness to the other. Quite funny when his office manager asked for the names of my companions and recognised all of us (we’ve been trying [very “trying”!!] to educate our MP!) Will report in.
That's headway ! Many years ago we used to get the same recognition when ordering pizza. We took that as a hint to stop eating pizza for a bit
