Science for ME PACE Briefing document

Hope 4 ME & Fibro Northern Ireland intend to send this to all N.I. MPs and MLAs and other influential people. Has anybody sent this to Carol Monaghan yet?

 

I think @Lucibee's correction in post #19 is very worthwhile heeding, because negative-versus-null mean very different things, and we need to be really sure it's right before sending it to the wider world.

 

Many thanks to all contributors for this .. I will forward copies to my local councillor, my local MP, as well as my local CCG and GP practice; that, and include in further evidence for my PIP claim.

Can't force them to read it of course, but will make sure to record that this info as been sent.

Wishing everyone improved health and every happiness. John

 

yes. updated version link.

 

A further message from Hope4ME

Brilliant

 

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

 

But what if your MP determinedly bats way anything to do with ME like it's a bad smell . Maybe something to do with him not giving a sh*t.

 

Or always appears to be too busy

 

I do wish those of us who struggle more cognitively could be assisted more with template letters for advocacy. I have the enthusiasm to be more proactive, but very often lack the brain power to put a decent sounding letter together to send to my MP. The last time I did it the payback was pretty awful.

 

I've started a fresh thread about this idea, which I think is very good.

I will try to write something and add it to that thread.

 

Thanks Sasha, that would be such a fantastic help. I manage to include the personalised stuff, it's just the whole daunting prospect of composing it from scratch.

 

Here's my attempt: https://www.s4me.info/threads/how-t...arol-monaghans-pace-campaign.3248/#post-57899

I'd welcome feedback (on that thread) before people start sending it off.

 

https://twitter.com/user/status/979269804736598017

 

just to say, I've been sending her stuff just for information (putting PACE trial as the subject) not asked her to do anything on my or anyone elses behalf (ditto with others I've sent info to).

 

Once the tide turns, and it suddenly becomes politically popular to stand up for PwMe, politicians like ours will suddenly start falling over themselves for photo opportunities to show everyone how they've striven tirelessly and selflessly to help PwME.

 

I'd welcome the bastards with open arms. Self-preservation and all.

 

Thanks for making a brilliant PACE briefing! I've asked a S4ME committee member if I can give it to Scottish Parliament MSPs, so will be taking it along for evidence when meeting with them tomorrow.

 

Very fine work. Thanks to all involved!

Two comments:

1) As advocacy work, I think the statement could be improved by having a stronger position statement at the outset (in addition to the supporting quote by Jonathan Edwards), prior to the "Background" section so that the agreement is framed for the reader immediately. Right now the document somewhat buries the lead in my estimation.

2) I think we should call for a vote of S4ME members to ratify support for the document. We still need rules for thresholds on supporting policy positions (and personally I think we should have strong super-majorities in such cases), but IMO if we are going to have voting rights on this forum this is precisely the sort of matter where members ought to weigh in. I'd expect near-unanimity for such a ratification vote in this case, which would only add advocacy value. A ratification vote would also serve as a matter of principle that members should approve policy positions moving forward.

Bill