Discussion in 'Advocacy Action Alerts' started by Sasha, Feb 20, 2018.
Would Charles Shepherd know, @Russell Fleming?
I was at the #Millions Missing demo outside Richmond House last May and remember both Jacob Rees-Mogg and Yvonne Cooper being good enough to stop and engage with some good spokespeople from #MillionsMissing. (That's if my memory is correct, I'm a bit faded at the mo)
Would these two MPs be worth contacting to encourage more cross party engagement?
I've just emailed parliament.uk to ask again
Would it be useful/helpful to raise the topic of how a certain high placed person publicly declared the PACE trial as a "Great, great trial"?
A public demonstration of poor judgement? Maybe?
Well the transcript shows a good number of MPs, but I had a feeling I read a list of who attended here on Science4ME. Maybe on the original thread? Surprised there isn't an official record actually. Dr Shepherd may know, but I doubt he would have recognised every one of the MPs round the table.
And further to my last comment, I just remembered Forward ME has a meeting on 28th February, so I would image this debate and future actions will be on the agenda. They are also meeting with one of the heads of Capita - the disability benefits assessment people - which might be opportune...
I've only seen a list of MPs who spoke.
In the consultation with stakeholders, RCGP was one of those who saw no reason to change the awful NICE guidelines.
I worry exactly what they would include in a new curriculum.
Given that Simon Wessely's wife, Clare Gerada, was head of the RCGP until recently, I think they could be a hard group to convince, yet in many ways they are the most important.
Yvette Cooper made a full recovery from ME.
edit: name correction
I think that would be Yvette Cooper.
Yes @chrisb you are right. Thanks.
Dr Shepherd has written an article for the GP Frontline magazine, and while I'm unsure of the publication date, it should be out soon (I'll find out when). The content was agreed with other members of Forward ME. And also, there's a RCGP conference later in the year and Forward ME are hoping to have a stand at the event at least (shame there was no slot available for them to speak about M.E. but it's better than nothing).
This announcement by the Minister did come as a surprise however. Like I said, we hadn't been able to make any progress before about including M.E. on the examination schedule. So, it's definitely something we'll follow up on. But of course you are right, it's the actual training they receive about M.E. that's of concern - who will give it, what it will say, etc. etc. - however, with the NICE guideline now being reviewed it could be a good time to review medical education as well.
We'll shortly be asking people what they do want from the NHS and NICE, and this will hopefully generate sufficient ideas to form a policy that we can then use in the NICE guideline review process and in medical education.
I have just remembered who stopped and showed interest at the #MillionsMissing and it wasn't Jacob Rees-Mogg ......it was Hilary Benn.
I did confess to being whacked out and brain faded!
Apologies for misleading post earlier. I must be more careful.
Apologies before I start. Am in a full flare.
Sasha's question was asked in the context of @Indigophoton's statement that we need to push for a full debate.
I shall be taking this to my MP. Have written him a holding email ( couple of sentences) today saying that I think the debate gave us a lot to work on which I will follow up when feeling better. So I shall be going to MP to pursue Parl process in requesting full debate. Nicky Morgan MP also mentioned this in the debate. Anyone here from Loughborough which is her constituency?
I think he will be helpful but need to see how this goes. He has written me an email ( @Sasha posted it at beginning of this thread) which indicates his views on how to use this Westminster Hall Debate so I shall try to follow his advice by looking in Hansard ( not yet done) for chinks that might be pushed open. Positive chinks like a debate, and improving GP education @Russell Fleming , and correcting anything that is wrong. Any opinions on what was omitted that should have been included and corrections needed?? I am brain dead. His words were he was " keen to work with others to maximise the benefit of the debate going forward". I can tell him of Nicky Morgan's interest. Do we know of anyone else?
I would like Jeremy Hunt to face a host of letters and a full debate in the Commons- he would have to be there, wouldn't he? I don't know how a Motion is formulated: again would have to rely on experts; and whether Carol would present it.
Overall I thought yesterday went well so long as we follow up appropriately. There were positive messages. Does anyone know if Carol has thoughts on how to follow up? Or how she got interested in this?
This d.....d illness. Have a full on flare with sore throats and glands up which I haven't had for a while, and feel rubbish, although I have been below par. No wonder we find it hard to get stuff done.
EDIT: question marks
My MP has investigated what's available locally in the way of treatments for PwME (only CBT and GET), and thinks a further debate is called for. I will PM you.
Any letters to MPs asking specific questions about ME I think would get forwarded to Jeremy Hunt. MPs seem to send questions on to whoever is in charge of that department. SO to get Jeremy Hunt inundated just send questions to your MP.
I asked mine why despite there being an ME sufferers Bill passed by Parliament in 1988 which said that there should be an annual report to parliament on ME from the department of health there doesn't seem to have been any (or I haven't found them). I also asked why insurance companies are allowed to include ME in the mental health exclusions that they currently put in insurance policies.
These were forwarded to Jeremy Hunt and he avoided answering them so I wrote again and my MP has sent back to him asking that he give his answers more consideration .
Seems a bit lax.
My thought would be to wait just a little while, until this has gained enough momentum for it to be unstoppable, at which point said person will have less places to hide, and less chance of controlling events.
What does anyone think about trying to use this to apply political pressure on Cochrane to properly engage with the concerns raised about the quality of their work?
eg the very weak responses Larun gave to Courtney's comments: https://sites.google.com/site/mecfs...exercise-therapy-for-chronic-fatigue-syndrome
Could this backfire? I don't know whether challenging Cochrane to do a better job in this way could do more harm than good. If we were to encourage this, we would need to do so very carefully, and make sure that any MP involved was being briefed by people who had a good understanding of all the details.
I think I'd answer similar to my post #58. Wait a little while and see if the political momentum picks up. Best to do these things from a position of strength if at all possible - a luxury we have been denied so far. But that may just be changing - quite lot happening on various fronts, this political front being amazing if it doesn't collapse.
Separate names with a comma.