Urge your MP to sign EDM 271!


CONTINUE TO ASK YOUR MP TO SIGN THE EDM!

We still need you to ask your MP to sign EDM (271) NICE Guideline on ME. 

For further information on the background behind EDM 271 read more here.

Please continue to urge your MP to sign EDM 271, share your story about ME (particularly your experience of GET) and pass on our parliamentary briefing.*

The sample letter also includes an invitation to the screening of Unrest in parliament. There’s never been a better time to make sure your MP is fully briefed on on what is ME and the consequences of current treatment! Make sure your MP is part of the change!

Step 1: Enter a few details 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!) Step 3: Let us know if you have had a positive response from your MP by contacting sarah.reed@meaction.net Note: The information entered here is to create a personalised message only. We do not save any of this information.
Your Name:
Your Postcode
I have had Myalgic Encephalomyelitis (ME) since
Generate »

*Note: If possible, consider making an appointment to see your MP and give a hard copy of the briefing. It is far more likely to be read if you are sitting in front of them! You don’t need to be an expert, but we want MP’s to understand the impact the guidelines have on individuals – share your own story. Personal connection will have a lot more impact (Maybe a friend or relative could attend for you?)

 

 

 

 


Categories: Actions, Featured actions, Policy, United Kingdom

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19 comments on “Urge your MP to sign EDM 271!
  1. Jane says:

    I would like to copy the email and send to my MP with additional pieces added to personalise it. However using my iPad, I can select all, copy and paste, but I get a tiny amount of the text in a sort of icon form.

    Any suggestions. I think the email is too long to copy out.

    1. Jenny says:

      Jane, I’ve just copied on my iPad and it was fine, but I don’t know what could be the issue with your email (I have googlemail as well as Google drive so that might make it more straightforward). Could you copy it to something else in between, like Word or a notepad app? Then copy to your email?

      1. Jane says:

        All sorted now. Thanks. Email sent to MP.

  2. LondonPots says:

    Hi Jane, can you select this?

    Dear [Name of MP],

    Re: Early Day Motion (271) NICE guideline on ME

    I have had Myalgic Encephalomyelitis (ME) since [Year Sick]. This means (share a little about how it has impacted your life) Current NHS guidelines recommend a treatment called Graded Exercise Therapy (GET) yet almost half of patients surveyed report a deterioration of symptoms following GET. [Share your own experience of GET if appropriate]

    However, NICE are proposing not to update their current guideline on ME which has caused shock waves throughout the community. ME patient organisation stakeholders have sent unanimous submissions asking NICE to reconsider. This was supported by a petition of over 15,000 (in under 2 weeks) stating current guidelines are not fit for purpose. A decision is expected in October but please could you add your support by signing EDM 271 which reads:

    That this house welcomes NICE’s consultation with patients and their representatives on whether to review its clinical guidelines on Chronic Fatigue Syndrome/ME (CG53); notes that ME is a serious, debilitating, chronic health condition affecting about 250,000 people in the UK, and is concerned that about half of the patients asked in a number of surveys reported adverse effects on their health from Graded Exercise Therapy (GET) which is recommended by NICE; notes recent biomedical research indicating an abnormal physiological response to exercise in ME patients, and that the US Centre for Disease Control no longer recommends GET for ME; notes also the unanimous call from consultation stakeholders, and a petition of 15,180 patients, for NICE to update its guidelines on ME; and urges NICE to review CG53 and to consider patient experience and recent international scientific evidence in its assessment of the merits of GET for treating ME.

    Please see the accompanying parliamentary briefing by #MEAction Network UK:
    http://www.meaction.net/wp-content/uploads/2015/05/NICE-Parliamentary-Briefing_Final.pdf

    I would also like to let you know of a lunchtime reception in the Speaker’s State Rooms on 24th October. It includes an opportunity to see an edited version of the award winning film, Unrest. This was directed by Jennifer Brea, who has ME. It shows the reality of living with ME. I would like to invite you to attend. Please RSVP to sarah.reed@meaction.net to confirm your invitation.

    Thank you for your time and interest,
    Yours sincerely,

    [Your Name], #MEAction volunteer
    [Residential Address]

    1. Jane says:

      Yes I have done that . Thanks

      Email sent to MP.

    2. Gill Bigglestone says:

      There is still confusion about the number of the edm.

      It is 271, but in the letter above has been transposed to 217.

      Could this be corrected please?

  3. Samantha says:

    I noticed when using the sample email that it says EDM 217, but it’s EDM 271. I corrected this in my email, but is someone able to change this on the sample? It says 217 twice, once at the beginning and once half way through. Thank you for organising this btw, and the sample email was a great help.

  4. Paul Kayes says:

    Done and shared.

  5. Paul Kayes says:

    Done and shared to my MP Dr Paul D Williams.

  6. Veronica Jones says:

    How long is the edited version, please?
    MPs will need to know how much time they need.

  7. Celia Bowhay says:

    I am confused why in the ‘Donation’ section is States $ not £. Please email me explaining why this should be .
    Many thanks
    Celia Bowhay

  8. Laura Mason says:

    Please support this. There is no support for cfs/me in South Northants. The current NICE guidelines are not fit for purpose. I am in a vacuum as far as help and support for this condition.

  9. Christina Henderson says:

    I sent this to my MP Conservative MP for Angus, Received a reply back today.
    “I have reached the conclusion that due to the volume of Early Day Motions, they have become
    devalued and I do not therefore, as a matter of principle sign even those with which I have the greatest
    sympathy.”.

    1. LondonPots says:

      Christina – perhaps ask your MP how an issue that affects 250,000 people in the UK should properly come to be debated in Parliament if not through MP intention? Does s/he consider this issue to be of sufficient concern to the sufferers, their families and to the UK economy to be debated?

    2. Sarah17 says:

      Not all MP’s can or will sign EDM’s but it’s still good to make them aware of our concerns and see the support from their colleagues. Obviously, we want as many MP’s as possible to sign the EDM but it’s also a great opportunity for the community to share their stories so MPs understand the far reaching consequences of current NICE guidelines and why they are not fit for purpose. Hopefully people are sharing our parliamentary briefing when they contact their MP too. Thank you for raising this with your MP. It is all about building blocks for the future!

  10. Heather McCabe says:

    Hi
    Is it possible for friends and family to write to their MP with the same letter despite not having the condition themselves?
    Thanks
    Heather

    1. Sarah17 says:

      Absolutely! We realise that not all people with ME will manage to write themselves and we certainly don’t want to make people worse in taking action! It is also powerful for friends/relatives to write about the changes that they have observed in a loved one. Our goal is that MP’s understand the consequences of current guidelines in peoples lives. If this comes from lots of different people that are affected through it, so much the better! Thank you!

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