ME Association: ‘ME Awareness Week 2018’ New Early Day Motion Launched by Carol Monaghan MP

69 signatures, new ones below.

 

My MP is, as usual, conspicuous by his absence, despite my email to him about this. Trouble is I suspect he is probably developing a form of "Barry blindness" when my emails turn up. What's that I hear you say? "Oh no, not another one of Barry's posts!" ...

 

Good to see my MP there now.
I have an email expressing strong support for our cause. He has also written to Jeremy Hunt, and Esther MeVeigh enclosing notes I sent him on the Westminster Hall Debate. I wish I had edited them more carefully- just not enough energy.
Hopefully there will be a lot more signatures. How many did the last EDM get? Was it in the 80s. We need to increase. I don't know whether this affects allocation of time for a full debate in the Commons.

 

Ditto. Getting a reply from my GP feels like finding a hen's tooth. No signature on this EDM, even though she expressed support the one time she did reply, and said she knows people personally who are affected. I'm beginning to think she's understaffed or just not very good at it or something, or maybe my emails aren't important to her. She frustrates me, especially when it costs me to email her. I hope I'm wrong about her.

 

A quick update on what Alex Chalk (Cheltenham) has done relating to M.E. in the last few days.

1) His fortnightly newsletter (#43) dated 14.5.2018 stated

“Had a meeting with Carol Monaghan MP (SNP) to discuss cooperation in their joint efforts to improve treatment of ME/CFS”

2) On 14.5.2018 Alex Chalk also lodged a Written Parliamentary Question:-

‘To ask the Secretary of State for Health and Social Care what steps his department is taking to stimulate and facilitate high-quality research into chronic fatigue syndrome?’

(*** Not wording supplied by ourselves, but we are awaiting the response and already have ideas of how to follow this up, especially the cfs part!)

3) His response regarding any EDM’s:-

“Re EDMs, I don’t sign them as they cost the taxpayer a significant sum of money and in my experience don’t really lead to political change. Other routes are far more effective. Also, as a PPS convention dictates that I can’t sign in any event.”
(PPS = Parliamentary Private Secretary.)

A thank you and follow up letter went off to him yesterday........

 

72 signatures, new ones below

 

Mine still hasn't signed

 

Me neither

 

Still no minutes of the 1st May meeting on the Forward ME website.

Since Carol Monaghan is now deputy Chair, I had hoped to read something about where the Parliamentary campaign is going.

 

I take it all back ( well, some of it) because my MP has now signed - I'll email to thank her this weekend.

 

Carol, interviewed by Gary in Episode 3 of his podcast; of particular interest is that she explains 19 mins into the episode about the EDM, and how it's part of the process rather than an end point in itself. http://www.meassociation.org.uk/podcast/

 

Thanks for another excellent show, @Gary Burgess.

 

Andy, have you the current number of MP signatures for the EDM?

 

No change since last update, 72.

 

Mine is also absent.

Although I have had a very detailed reply from a parliamentary assistant who had clearly spent quite some time looking through the parliamentary library to see what they'd been doing over last couple of years about ME in areas of benefits, getting back to work schemes and the funding to various research studies.

 

Just shared this excellent podcast on Facebook, with a note asking people to sign the EDM.

Thanks again Gary B

 

Mine hasn't signed any motions at all apparently, presumably because he is a
Parliamentary Private Secretary. That's the reason he hasn't signed this one anyway.

 

80 signatures, new ones below

 

My MP has a policy of not signing EDMs. I’ve still asked if she will, told her that there are cross party MPs signing.

I asked her to at least communicate and work with Carol Monaghan if she won’t sign the EDM.

Frustrating that there are EDMs but MPs can just choose not to sign them. Not helpful.

 

There are 650 MPs total, so 80 is 12.3%. I wonder what % it will take before my MP decides it will be safe to jump on board?