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

When MPs say that they don't sign EDMs maybe it would be worth people emphasising that this is an unusual case, where a section of the UK state that politicians tend to just defer to (medical research) has made serious mistakes, and now appears to be trying to avoid acknowledging their failings, so just having MPs show concern will be of some value, and may help make it clear that this issue cannot be swept under the carpet. There is a danger that presenting this as a challenge to the medical research Establishment would make most MPs run a mile though.

I wish that this bit had not been included in the EDM, I really don't see any benefit to it, and think it would be stronger without: "recognises the fantastic work campaigners and charities are doing to highlight ME as a physical condition which is not all in the mind".
 
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dangermouse said:
Frustrating that there are EDMs but MPs can just choose not to sign them. Not helpful.
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I'm assuming that you mean that it's frustrating that MPs can choose to just not sign any EDMs at all ever, whether they theoretically support them or not, which I agree with you on.

If the first initial response is that he/she just doesn't sign them at all, my suggestion would be to ask if they support the wording of the EDM and, if they do, what will they be doing to support the efforts of Carol Monaghan in improving the lives of 250,000 ME sufferers in the UK, and, if they don't, why they feel that the 250,000 ME sufferers are adequately provided for.
 
Every time I see this thread I feel guilty about not contacting my MP yet. Task for today...
I wrote to him last year before the NICE guidelines announced their review. Got a dismissive answer. I really should try again now there's something easy to ask him to do.
 
@Esther12
I wish that this bit had not been included in the EDM, I really don't see any benefit to it, and think it would be stronger without: "recognises the fantastic work campaigners and charities are doing to highlight ME as a physical condition which is not all in the mind".


Maybe just end it after "physical condition". I get uncomfortable when explaining this illness is not psychological. It can sound as if psychological illnesses are not as important instead of wanting an accurate explanation.

EDIT: no idea what happened there. Apologies. @Esther12's quote ended at "in the mind."
 
The 'all in the mind' phrasing is loose in a way that I think is unhelpful, but even just the "recognises the fantastic work campaigners and charities are doing to highlight ME as a physical condition" bit is unhelpful imo.

Wouldn't it be better to just have "recognises the fantastic work campaigners and charities are doing to help improve how those with ME are treated"? The criticism of PACE would be strong without the 'physical condition' reference, which I don't think will be of any benefit to us, but might risk playing into some prejudices.
 
Esther12 said:
The 'all in the mind' phrasing is loose in a way that I think is unhelpful, but even just the "recognises the fantastic work campaigners and charities are doing to highlight ME as a physical condition" bit is unhelpful imo.

Wouldn't it be better to just have "recognises the fantastic work campaigners and charities are doing to help improve how those with ME are treated"? The criticism of PACE would be strong without the 'physical condition' reference, which I don't think will be of any benefit to us, but might risk playing into some prejudices.
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Whatever was written there would likely be something we felt not quite right. In many ways it is more the process that is important.
 
My mp as expected won’t sign but I did at least get a commitment from the Parliamentary assistant that the MP would review the information and discuss the issue of a debate with colleagues. So I went back and said Nicky Morgan had been to screening of Unrest in her constituency and spoken about it in her local paper. Hopefully she will ask NM about it and a bit of progress may be made. I’ve also said I posted about the response on the local ME group Facebook page. Meeting is still allegedly on offer when I can do it so I need to start preparing myself.
 
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