The Times - Call for review of ‘flawed’ ME research in Lancet letter

KarenSW said:
I'm the admin for ME Action England South West and one of our members met with Thangham Debonnaire last week who said that because she was an opposition whip she would be unable to sign the letter to the Lancet (or sign up to MAIMES), so other PPSs/whips/ministers may say the same. A few other members have been contacting their MPs about the letter but are yet to recieve a response. I meet with my MP Darren Jones on the 21st September and am hopeful that he might sign - especially as he is a member of the Science and Technology Select Committee along with Carol Monaghan which recently carried out a general investigation into research integrity. Carol Monaghan mentioned the PACE trial on at least a couple of occasions during that investigation.
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janice said:
Yes my MP is one of these. I've forwarded the MEA link from 24th Aug since I felt it gave a good summary and labelled it something like Increased International awareness of of inappropriate medical care of ME/CFS patients. I sent it to his senior adviser since I never usually get much of a response from his parliamentary secretary. Plus I asked what my MP was doing to assist this. Ho hum. Probably nothing will happen but I've got nothing to lose.
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Thank you for feeding back this information. It helps put a context to the situation we are facing in gaining MP support which we need if we get a main chamber debate. There are obviously conventions in place which make it difficult for some MPs to sign. It is not just that we are not working to get them on side.

I think we maybe need to act strategically. There were over 100 signatories to the last edm so they presumably are open to consider signing unless they now have a role which precludes this. There are also the rest of the members of the Science and Technology Committee. Others here may have more experience and interest ( cannot remember their names)and may be able to suggest other avenues.

I imagine MPs without safe majorities will be more receptive to constituent views.

Anyone know what Carol is planning currently? She is now deputy Chair of Forward ME but I have been watching for their minutes and haven’t seen any since 1st May unless posted in last 2 days.
 
Binkie4 said:
Thank you for feeding back this information. It helps put a context to the situation we are facing in gaining MP support which we need if we get a main chamber debate. There are obviously conventions in place which make it difficult for some MPs to sign. It is not just that we are not working to get them on side.

I think we maybe need to act strategically. There were over 100 signatories to the last edm so they presumably are open to consider signing unless they now have a role which precludes this. There are also the rest of the members of the Science and Technology Committee. Others here may have more experience and interest ( cannot remember their names)and may be able to suggest other avenues.

I imagine MPs without safe majorities will be more receptive to constituent views.

Anyone know what Carol is planning currently? She is now deputy Chair of Forward ME but I have been watching for their minutes and haven’t seen any since 1st May unless posted in last 2 days.
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I agree, good to be more strategic and as you said MPs without safe majorities are also likely to be more receptive to constituent pressure. What we have been doing in the ME Action regional group is connecting constituents with other constituents for the same MP, so they can possibly, if well enough, arrange a group meeting with their MP.

I would love to know if there are any constituents of Carol Monaghan's on here. It would be great to make contact with her via constituent contact to see if she can give some feedback on how best the ME community can support her, if there are any MPs it would be particularly beneficial for us to target and what her next steps are.
 
I was casually browsing the SMC site earlier to see what opinions they had decided the great unwashed should hear and it occurred to me, and confirmed by a search of their site, that they have made no comment on this criticism of PACE (publicly at least). That's either a step forward, they've given up trying to defend the indefensible, or they are trying to ignore the criticism, in the foolish hope it goes away.
 
Andy said:
I was casually browsing the SMC site earlier to see what opinions they had decided the great unwashed should hear and it occurred to me, and confirmed by a search of their site, that they have made no comment on this criticism of PACE (publicly at least). That's either a step forward, they've given up trying to defend the indefensible, or they are trying to ignore the criticism, in the foolish hope it goes away.
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Probably indicative of burying heads in the sand, implying your latter option. Probably that and coming to the realisation they are out on a very long and very high limb, finally realising it's almost parted company with its trunk. Rabbits frozen in headlights maybe.
 
Andy said:
I was casually browsing the SMC site earlier to see what opinions they had decided the great unwashed should hear and it occurred to me, and confirmed by a search of their site, that they have made no comment on this criticism of PACE (publicly at least). That's either a step forward, they've given up trying to defend the indefensible, or they are trying to ignore the criticism, in the foolish hope it goes away.
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I suspect that they were involved in Watt's statement (Ed Sykes was promoting it, and it has some familiar SMC phrasing), and have just decided that they're best off hiding behind the authority of others.
 
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