Urge your MP to Attend Westminster Hall Debate on PACE

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A Westminster Hall debate on the PACE trial has been scheduled for Tuesday, 20th Feb., 11-11:30 a.m. Carol Monaghan MP has secured the debate.
Please urge your MP to attend the Westminster Hall debate to learn about the flawed science behind PACE, and how it has affected policy on Myalgic Encephalomyelitis (ME) in the UK, forming a pervasive perception of ME as a psychological disease that can be cured with graded exercise therapy (GET) and cognitive behavioural therapy (CBT).
The debate will give MPs the chance to hear about the devastating impacts of PACE: how patients continue to report irreparable harm after they followed the recommendation to undergo graded exercise therapy; how the focus on cognitive behaviour therapy has stigmatized people with ME and resulted in a severe underfunding of biomedical research and a lack of healthcare provisions for adult and pediatric patients.
Watch the Debate or Attend the Debate
Activists have drafted a letter that you can personalize and send using the box below. (If the box below is not working, you can find your MP here, and view the sample letter here.)
Step 1: Fill in the fields below and click the “generate” button, a personalised message will be automatically copied to your clipboard, and you will be taken to the website “Write to them” allowing you to email your MP directly.
Step 2: Paste your message into the box, replacing the current text (feel free to change this however you feel is appropriate but please be polite and avoid any temptation of introducing party politics!) There are two {marked sections} in the text to write a little more about yourself.
Step 3: Let us know if you have had a positive response from your MP by contacting [email protected]

Notes:
The information entered here is to create a personalised message only and we do not save any of this information.
Remember you will need to paste the content into the next page.

Your Name:
Your Postcode
I have had Myalgic Encephalomyelitis (ME) since
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Actions your MP can take right now!

Once your MP learns about PACE and the neglect of people with ME, there are actions they can take right now. Follow-up with your MP following the Westminster Hall debate, and suggest that they take the following actions right away:
 

  • Your MP can act now by signing the EDM (271) NICE Guideline on ME that removes graded exercise therapy (GET) and Cognitive Behavioural Therapy (CBT) from the NICE guidelines on ME.
  • Encourage your MP to watch the award-winning ME documentary, Unrest, that was shown in the House of Commons, available on Netflix.
Learn more

Read the Parliamentary briefing about the PACE trial here.
Read more about Parliamentary Early Day Motion 271 here.
Read more about the PACE trial here.
Read an article about the politics of ME in the UK here.
 

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6 thoughts on “Urge your MP to Attend Westminster Hall Debate on PACE”

  1. I have Fibromyalagia & M.E for the past 29 yrs. My illness has got extremely worse over the years with no letting up. Most days are very debilitating and I’m in severe pain and fatigued. I’ve been longer ill than I was well. I’m serving a life sentence in my own body with every day being a struggle .

  2. Janette dennison

    I have ME AND WE NEED OUR VOICE TO HEARD . I STRUGGLED TO ANY DECENT MEDICAL HELP AND HAVE HAD TO SEEK ALTERNATIVE THERAPYS.THIS IS NOT A MENTAL HEALTH ISSUE ITS PHYSICAL . SOMETIMES THE FATIGUE IS ALL CONSUMING AND HARD TO DEAL WITH , COMBINED WITH ACHES AND PAINS AND BLINDING HEADACHES . PLEASE JOIN THE HEARING AND TRY TO CONSIDER OUR PLEAS FOR HELP.

  3. I have M.E/CFS, which has progressively deteriorated since 1999.
    Having had several periods of ‘ remission’, where I have stabilised enough to work, my last job finished me off four years ago, and I struggle to feel well enough to do anything, without incurring a worsening of this horrible, painful, debilitating condition.
    My immune system is now severely compromised, and I have a fortnightly recurring virus which is so debilitating, alongside hypothyroidism and many other musculoskeletal issues.
    The pressure to get back into the workplace is not helping my recovery, and has brought on anxiety and depression, yet I must meet DWP conditions to comply with my receipt of ESA.
    Please take these illnesses seriously, they affect many thousands of people, and there is no ‘accepted’ effective treatment on offer, which might enable sufferers to have a ‘good enough’ life. I would give anything to be well enough, and to have enough energy, to be able to work and to hold my head up in society, once again.

  4. I do not have M.E. but would have liked to have urged my MP to go to attend the PACE debate. Sadly the link as set up only applies to those with M.E. How can someone like me take advantage of the link to contact our MP? I will email anyway (have had other discussions with him about different topics so quite used to emailing him), but kind of disappointed not be able to go through ME Action

  5. I am the mother of Heather Inglis , postcode shown above.
    I have met with Joanna Cherry and discussed a couple of issues involving my daughter, one of which is the fact she has ME and is now no longer able to return to her much loved career as a teacher. She was diagnosed 5 years ago and initially was off work for 9 months then returning to teaching part time. Sadly her condition deteriorated towards the end of 2016 when she was unable to cope with even part-time teaching.
    CBT and graded exercise have been shown to have a detrimental effect on ME sufferers. More research needs to be done – no centres of excellence in Scotland, GPs have very little understanding of the condition and there is only one dedicated nurse who is employed in Fife.
    NICE guidelines as they stand at present need to be scrapped.

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