How to follow up on the Carol Monaghan debate in Westminster

MeSci said:
Described here: https://en.wikipedia.org/wiki/Brynmor_John
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"The circumstances of his later life and premature death are cited by physicians who believe the extensive evidence for the biological etiology of chronic fatigue syndrome. Brynmor John had been diagnosed with the illness, and died suddenly immediately after exiting the House of Commons gym. He had been following an exercise regime based on what is argued to be unfounded and unethical medical advice: that sufferers may exercise their way toward a cure for the illness".
@NelliePledge thanks for this info.
 
Sly Saint said:
"The circumstances of his later life and premature death are cited by physicians who believe the extensive evidence for the biological etiology of chronic fatigue syndrome. Brynmor John had been diagnosed with the illness, and died suddenly immediately after exiting the House of Commons gym. He had been following an exercise regime based on what is argued to be unfounded and unethical medical advice: that sufferers may exercise their way toward a cure for the illness".
@NelliePledge thanks for this info.
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Thanks to @medsci for the link it would be good if someone has got some energy to send the Hansard link and this wiki one to Carol M.
 
Skycloud said:
Quick update. Really pleased to find an email of support from my MP today - amongst other things said if GET and CBT stay in the guidelines she will fight it.
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Pleased to hear she will fight GET and CBT remaining in the guidelines.
Has she signed the petition? It's an action that can be taken now.

EDIT: have written to thank my MP for support including signing petition and asking him to work with Carol and other MPs to obtain a full Commons debate.
 
Our local M.E. group wanted to contact the MP’s in our County (5 Cons, 1 Lab). We have members from 5 of the constituencies and the first letter has been prepared and was sent on Friday 16.3.18.
3 of us hope to visit our MP within the next month for added impact.

Sarah Reed from ME Action provided me with some basic info, which might help others who have the energy and also want to contact their MP’s.

“Hi Linda,

Great to hear from you and about your friendship group and willingness to contact Alex Chalk. I know he is very supportive and it would be well worth your time to build up rapport with him.

Yes, I've been lobbying Nicky Morgan since Unrest and I'm working with MEA, AfME, and ME Trust to produce a collaborative briefing. Nicky (& David Drew) were planning to put in for a Westminster Hall debate just after recess ie this week onwards!! (Debates are like busses!)
However, after Tuesday's debate Nicky, Carol, David and others are now planning their debate on a much larger scale. We were really encouraged how much cross party support there was - and it's growing!

I've no idea when the next debate would be but I know they are hoping for 'May or sooner' to keep the momentum going.

It would be great if you could arrange to see Alex asap and share your story. You could take our #MEAction parliamentary briefing with you as a hard copy? This focuses more on why the NICE guidelines need updating. More details on PACE can be found here: https://www.meaction.net/pace-trial/ .(I've already sent him a summary of Tuesday's debate with links to Hansard.)

If Nicky is successful in securing a debate we might not get much notice. It could be as little as a week so it's best to get prepared now. We will email out the collaborative briefing to MP's when the time is right and all we would be asking you to do at this stage is encourage them to attend.

MP's really do respond best to requests by constituents, so thanks very much for taking the time and energy to do this.

Best wishes,


NICE-Parliamentary-Briefing_Final.pdf “


If you are able to make personal contact with your MP, a quick email to sarah.reed@meaction.net would be appreciated as she is trying to collate a list of M.E. receptive MP’s.

Shout if you would like more info, I’m a great believer in not re-inventing the wheel!
(Bit slow moving, but pleased we’ve managed to get this far)
 
Skycloud said:
Quick update. Really pleased to find an email of support from my MP today - amongst other things said if GET and CBT stay in the guidelines she will fight it.
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I fear that trying to fight NICE guidelines once issued is not going to have any effect. MPs, like patients, don't count in the world medical evidence. If she wants to do anything it needs to be before the guidelines get issued. We do have two years for that, though, so hopefully there will be opportunities.
 
Jonathan Edwards said:
I fear that trying to fight NICE guidelines once issued is not going to have any effect. MPs, like patients, don't count in the world medical evidence. If she wants to do anything it needs to be before the guidelines get issued. We do have two years for that, though, so hopefully there will be opportunities.
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I really do hope that there's something we can do long before that, to get these guidelines overturned. That's a lot of patients who are going to be treated with GET in the meantime, to the detriment of their health. I'm really worried about them.
 
Sasha said:
I really do hope that there's something we can do long before that, to get these guidelines overturned. That's a lot of patients who are going to be treated with GET in the meantime, to the detriment of their health. I'm really worried about them.
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We might persuade NICE to remove the recommendations before 2020 but I think it will be very hard. What may be more promising is if the profile of the PACE critique is raised generally in the public consciousness. We have got as far as parliamentary debate and there are other avenues to pursue so maybe that will happen over the coming months.
 
Esther12 said:
Just letting people know that this now seems out of date, as it looks like it was written to try to get NICE to agree to update their guidelines, which they are now doing. [I was a bit confused when reading it]
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Sorry to confuse.

I think Sarah attached it as possible background reading for MP’s who may not understand why we need a debate on the PACE trial.
 
Just for the record, I have heard back from my MP, who wrote to Carol Dinenage to raise my post-debate queries (challenges).

I made detailed, referenced, points regarding COI, use of Oxford criteria, PACE PIs sitting on the Cochrane review, the NICE guidelines review, the current situation regarding GET, and the FND brain study. I also described my own experience of inappropriate treatment under the current NICE guidelines, and its negative effect on my health.

Lord O'Shaughnessy, Parliamentary Under-Secretary for Health, wrote back, but my questions were not answered. Instead, much of the reply is a re-iteration of the usual, very similar, if not identical in places, to what the Minister said at the debate.

From Shaughnessy's reply:
NICE's clinical guidelines relate to a whole pathway of care and can make a large number of recommendations spanning all stages of care from diagnosis to treatment of a condition.
...
Recently, NICE has been made aware of three US reports that have indicated there are likely to be changes in diagnostic criteria that could have an impact on the CFS/ME guideline recommendations and decided to start a check of whether the guideline needs updating. NICE is also been made aware of new information about the PACE trial. For these reasons NICE is currently reviewing its guidance....
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I don't think I'd realised that NICE were considering changing the diagnostic criteria, as well as potential treatment recommendations.

On the positive side, my MP is willing to help if there is anything else she can do.
 
PS: I feel a bit guilty for not doing more to try to follow up on this debate. It seems like a great opportunity to get pressure applied by those outside of the usual corrupt networks. I did get into a potentially promising exchange with my MP, but have then taken ages to send a new response.
 
Not sure if this was the right thread. Perhaps we should make a general Carol Monaghan thread?




From Monaghan on FB:
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Delighted to join Anna Foster on BBC Radio 5 live today to discuss the ongoing campaign to change attitudes towards ME, for better research funding and a change to the current damaging NICE guidelines.

Did anyone listen to the whole interview and/or have link?
 
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