How to follow up on the Carol Monaghan debate in Westminster

I've heard from my MP, who asked a question at the debate.

She says that due to the number of MPs who attended, and the lack of time for them to make substantial points, she thinks there is "a strong case for ME Treatment to be debated at greater length in Parliament".

I think this is what we need to push for now. I will email her again, thanking her and asking her to follow up.
 
Indigophoton said:
a strong case for ME Treatment to be debated at greater length in Parliament
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I would like to see that framed as 'why is CBT/GET the only treatment that has been available for the last 10 years' and bring in the PACE trial and all the other BPS crap.............
The whole sordid affair needs to be exposed not just for pwME but all the others who will suffer as a consequence.
 
Indigophoton said:
I've heard from my MP, who asked a question at the debate.

She says that due to the number of MPs who attended, and the lack of time for them to make substantial points, she thinks there is "a strong case for ME Treatment to be debated at greater length in Parliament".

I think this is what we need to push for now. I will email her again, thanking her and asking her to follow up.
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I'd like to know exactly how we push for this. What do we as patients need to be doing?
 
Does anyone have an MP who is on the health select committee? I'd really like to see them take this up. Their chair is Dr Sarah Wollaston, a GP. I have not heard any suggestion that she is clued up on ME or on our side. I simply don't know, but if she could be persuaded she could be a powerful voice. She's a Tory, and her party are (sort of) in power.
 
Sasha said:
I'd like to know exactly how we push for [a longer debate in Parliament] What do we as patients need to be doing?
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According to the Parliament website,
Debates - General
A similar system for debates applies across the Commons and Lords. Subjects are introduced as a proposal, or motion, by Members, then debated according to strict sets of rules.
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So it looks like we need an MP to introduce a motion.

Carol Monaghan would be the logical person to do this, I would think. Once she's had time to regroup, perhaps someone who tweets could ask her?

Hopefully the fact that the Minister for Care, Caroline Dinenage, at the debate today agreed that a longer debate might be a good idea means that there's a real possibility of this gaining momentum now.
Nicky Morgan MP said:
This is clearly a very important debate. I think both the hon. Member for Glasgow North West and the Minister would agree that it is not possible to do justice to the concerns raised by all our constituents, and the 200,000 sufferers that the Minister has identified, in half an hour. Does the Minister agree that this is a subject worthy of wider debate in the House of Commons? Constituents such as Sarah Reed, who have written to me, say that because of the belief in CBT and GET, and because academics believe in the results, many other treatments have not been pursued. Does the Minister feel angry about that?
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Minister for Care said:
As has already been said, it is important that we listen to patients. As I will go on to explain, NICE is now looking at reviewing its guidance on this and, in the light of that, it may well be worth discussing the issue more fully.
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One thing I think we can do is (re) contact our MPs and ask them to to second any motion, (or even to introduce it if for some reason CM doesn't want to), and to be prepared to join in the longer debate.
 
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I think it is worth remembering that when the countess of Mar raise PACE in the house of lords she seemed like a lone voice. Reading the Hansard transcript it seems to have switched with various MPs attacking PACE and just the minister basically reading out a statement from QMUL in defense of PACE.

I think this shows things are moving.

What I do wonder is can we get hold of information given to the minister and see who has been lobbying and what they were saying.
 
Andy said:
I think one thing to encourage would be for those people who contacted their MPs to follow up with them in some way. So, for those MPs who didn't attend, send them a message with a link to the video and transcript, highlighting a few key points and perhaps pointing out how the attention on this issue is just growing.
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Yes, I was thinking along the same lines. This will all die a death unless more follow-up debates happen. It's a bit like keeping a ball in the air - it just drops to the ground without determined and continuous efforts to keep it up; the ball has just been kicked into the political air. I'm no expert here, but it would be nice if we could at least convert ME-allergic MPs (like mine, big time) into ME-interested ones; maybe this debate might help with some of them. If we could get more MPs to come out of the woodwork, then maybe they might help push for another debate? Maybe Carol Monaghan herself might have some advice on this - she seems to be well tuned in and do her homework.
 
strategist said:
It's more about the right people. I don't mind brain imaging studies, but expect the worst spin and shoddy methodology from PACE trial authors & friends.
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Agree completely we need more good work on effects on the brain ...I just found the use of the word "structures" sounded a bit odd in the context used? Structures seems an odd word? I thought brain chemistry was a bit more complicated than just a load of blocky things? Perhaps it's far too complicated for someone like me to understand ? Or perhaps this is a more philosophical concept the authors are trying to convey?
 
Trish said:
Does anyone have an MP who is on the health select committee? I'd really like to see them take this up. Their chair is Dr Sarah Wollaston, a GP. I have not heard any suggestion that she is clued up on ME or on our side. I simply don't know, but if she could be persuaded she could be a powerful voice. She's a Tory, and her party are (sort of) in power.
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The comment from the Minister "In recognising the need for GPs to be aware of the condition, the Royal College of General Practitioners identified CFS/ME as a key area of technical knowledge that GPs should have as part of their qualifying exams, ..." was one that caught my attention as well.

Trying to get a decent slot for M.E. on medical students syllabuses and in their examinations has always been hard, and one reason was that no medical body accepted it was their problem and tended to pass it off on the individual universities. But now the Minister has said that, we will be following it up with the RCGPs.

Also, Dr Shepherd was contacted by a MP who is on the Health Select Committee yesterday, and is hoping to meet with him today in Westminster. We're not entirely sure what the MP wants to talk about in terms of taking action, but the PACE Trial Debate and NICE guideline review are on the agenda.

Carol Monaghan does not seem likely to give up on the PACE Trial or on M.E. There are also several comments from constituents whose MPs either took part in the debate and accepted the issues raised, or who were more engaged with their constituents than they had been previously.

Quite a difference when you compare reaction with, for example, the House of Lords debate on PACE where the Countess of Mar stood in isolation. So, I think the patient voice and the Trial reanalysis has managed to turn things around.

I don't know the extent to which all of this will influence NICE or the NHS which must ultimately be our targets. We will continue pushing out our messages, and trying to get patient stories into the media, but I think we need to turn our attention to what we want in the new NICE guideline, and what we want by way of support, care and treatment from the NHS.

I'm rather brain-dead following yesterday, so apologies if this isn't very succinct, but hope it helps.

I will know more when Dr Shepherd returns and we have a chance to meet and discuss plans with all our trustees.

All the best

Russell

(I work part-time for the ME Association).
 
I've just had confirmation from my MP's assistant that I've got a meeting with my MP about PACE and the lack of biomedical treatment which I have experienced over last 13 years in his constituency. Whooopeeee.
I just need to get myself organised so the sensible and logical me gets an airing!
I've got a month.
 
Firstly if your MP attended yesterday it’s definitely worth thanking them.

Jenny TipsforME said:
I’m not clear what it is ok to say about this, but UK ME charities were already having these discussions before yesterday. [re follow on debate] There should be another debate but sometimes there is a short window (eg a week) between hearing a debate is going to happen and it happening.

This obviously isn’t great for brainfog so what people can do ahead of time is to prepare your personal story as an email for your MP. BUT DON’T SEND IT YET. Wait to hear when the right time to email is.

Depending on what has happened to you personally you might want to emphasise a narrative of
1 harm from GET
2 ineffectual CBT
3 lack of treatment
4 social care neglect
5 stigma and prejudice
6 consequences eg benefits, child protection, employment

Something that could be read out like the examples in yesterday’s debate.
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I know that in this day and age cross-party collaboration is probably something that happens once in a blue moon, but I'm told that Carol Monaghan has been speaking to Nicky Morgan, which is a good sign.

So in the spirit of that - if your MP attended, perhaps encourage them to reach out to one of them to ensure more support for further debate?
 
Didn't get a reply to my letter asking my MP to attend (she didn't) but have asked her to watch the debate or read Hansard. Holding out some hope as she signed the NICE EDM

Tried drafting something for reporters but ended in a mess due to cog function. Is this still worth pursuing? or wait til there's a longer House of Commons debate? :asleep:
 
From https://www.meaction.net/2018/02/20/members-of-parliament-hear-about-flaws-of-pace-trial/
Keep connecting with your MP – a note from #MEAction activists:

#MEAction will be following up today’s debate with the 180+ MP’s known to us. However, MP’s respond best to their own constituents. Thank you to everyone who has made contact with their MP over the last few months. We realise that this comes at a cost to health but it has made a real difference. Through sharing your experiences, alongside the showing of Unrest in parliament, MP’s are starting to understand the personal loss and we are gaining their interest and attention. As we’ve seen today they are wanting to speak up for us.

If your MP attended the debate, or especially if they made an intervention – thank them.

If they didn’t attend, please ask them to look it up in Hansard or share this link.

We are already in the process of planning a bigger debate in the near future and are working alongside other ME charities to make sure we make the best impact possible. There certainly seems enough interest to make this bigger. Unfortunately parliament works at a faster pace than most of us with ME! If we are successful in securing a debate we might only get a weeks notice to prepare, so if you’ve not already contacted your MP why not prepare your story to add to the weight of others? We will let you know when is the best time to send it.

There’s a lot more that needs to come to light and be unpacked further but it’s been a great day of hope and optimism for people with ME. Change comes slowly, but we hope this is just the launch pad of many more to come!
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Barry said:
Is it possible to check which MPs attended?
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https://www.s4me.info/threads/how-t...naghan-debate-in-westminster.2513/#post-46081
"So I've been on the phone with the H of Commons enquiry line.........my question was
is there a way to know who attended the debate (as I thought it might be good to know who is 'in our corner'). A lot of going around the houses and eventually told that unless they actually spoke there is no written record (the first bit I already knew). :banghead:
Hansard is usually available three hours after a debate (according to the person I spoke to) but most likely will only list speakers.

Anyone got any other ideas how to find out who attended? (I don't want to bother Carol Monaghan with it)."
 
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