Call to Action: Westminster Hall (UK) (parliamentary) debate: PACE trial and its effect on people with ME - Carol Monaghan February 20

This is what I wrote:

"I am sure you are aware of this debate coming up in Westminster on 20th February. I hope you will consider attending on behalf of local ME patients.

If a time could be arranged prior to this date, I would be grateful for the opportunity to talk with you again about ME issues, and specifically to help you understand how damaging the PACE Trial has been to ME patients world over.

I recently attended the NICE stakeholder engagement meeting in London (16th January 2018) in preparation for the review of the CG53 guideline for ME. There is still huge concern amongst ME patients that NICE will not abandon their promotion of psychosocial therapies for ME - despite the widespread scientific criticism of the PACE Trial methodology etc.

All support at this time is critical. Perhaps you could encourage other MPs to attend this meeting to give a voice to their ME constituents."

Bit in italics obviously not relevant to others. And not everyone would want to meet their MP so maybe they could just ask if they could forward some information.
 
Morning,

The ME Association was contacted by Ms Monaghan's office yesterday just after the ballot was drawn. We didn't know anything about it beforehand.

Dr Shepherd is away on business today, but is hoping to speak to her later this morning I understand. We have also this morning sent her office information relating to the Journal of Health Psychology - press release, and special PACE edition - and I am sure once Dr Shepherd has spoken to her, we'll be tasked with doing more.

At present I haven't been asked to produce anything calling on people to invite their MPs to the debate - but I hope to learn more tomorrow.

It rather caught us on the hop as we're trying to work on the other Westminster Hall debate that was revealed in the minutes from Forward ME (although this debate is still in the planning stages).

Hope that helps. Sorry I don't know more.

We hadn't been asked to make a public announcement about the PACE Trial debate, but @Dolphin discovered it, so we've now also shared it across our social media.

P.S. For those that don't know, I work part-time for the ME Association.
 
Back in 1988 there was an ME sufferers bill passed in parliament. One thing it said was that each year the department of health had to produce a report to parliament on ME. I have not been able to find any of these so had written to my MP about this. It was overlooked in her response to me so I had sent her another email yesterday.
If anyone knows if any were produced please let me know and if not maybe it would be good to add to any letters you send to MPs.
 
I would think personal accounts of inappropriate or negligent care and advice stemming from the results of the PACE trial would be useful.
I would think pithy soundbites will be very useful as well as detailed accounts - these will help in such a short debate.

I wouldn't shy away from sending something even if you think you're not up to writing anything well crafted - because the number of responses always gets quoted so numbers help.
 
Liv aka Mrs Sowester said:
I would think personal accounts of inappropriate or negligent care and advice stemming from the results of the PACE trial would be useful.
I would think pithy soundbites will be very useful as well as detailed accounts - these will help in such a short debate.

I wouldn't shy away from sending something even if you think you're not up to writing anything well crafted - because the number of responses always gets quoted so numbers help.
Click to expand...

Do you think it's worth amending the thread title so that people know there's an action they should be taking?
 
Liv aka Mrs Sowester said:
Carol Monaghan is requesting comments on PACE be emailed to carol.monaghan.mp@parliament.uk
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If the debate is on the impact of PACE maybe it would be good if non-uk people could put together a brief statement to show how it has not only detrimentally impacted pwME in the UK but all over the world.

@Joh @Inara @Aroa @ScottTriGuy @MErmaid @Cheshire (sorry I know I've missed loads of people)


(As a side issue, could a sort of international group be set up here on S4ME with 'reps' from the different countries so that, rather than attempt to tag different people, a general 'International' tag be used to notify all countries? @Adrian @Andy )
 
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