UK - The All-Party Parliamentary Group on ME to Re-Convene on 14/01/20 Invite Your MP to Attend!

[Cinders66]

https://www.meassociation.org.uk/20...ase-invite-your-mp-to-attend-09-january-2020/

 

[Cinders66]

https://twitter.com/i/web/status/1217076425871720450

MPs who attended starting to report on the event on Twitter. I hope that the Talks went beyond access to medical care. Will be interesting to hear the more detailed reports and I think that it Is important patients themselves engage with their MP about what they consider important and to also boost numbers attending.

 

[Cinders66]

Carol Monaghans tweet
@CMonaghanSNP: Delighted to have such broad cross-party support for the re-establishment of the APPG on ME. We will be pressing for better treatment programmes for those living with #ME #MyalgicEncephalomyelitis

https://twitter.com/i/web/status/1217099275169157125

the question is, what treatment, pacing? ... and what else... does that mean campaigning on research funding , or not...

 

[andyguitar]

the question is, what treatment, pacing?

I would say that is very,very unlikely. What happens in the near future regarding what treatments are available on the NHS will probably be decided by the Gov advisory panel NICE. I dont think these MPs would support pacing CBT and that sort of thing.

 

[Cinders66]

I would say that is very,very unlikely. What happens in the near future regarding what treatments are available on the NHS will probably be decided by the Gov advisory panel NICE. I dont think these MPs would support pacing CBT and that sort of thing.

I actually think that nice will be moved towards promoting pacing versus its current GET/CBT promotion. Nice is essentially taking care of that “management” aspect so i don’t know really this APPG meeting tweets mean, as MPs usually defer to NICE. Obviously there will be reports with details. My fear is that it could go down the same sort of non ambitious paths as the previous ones which is why they fizzled.
I’m a radical - I would like an inquiry into twenty years of failure, a National m.e strategy as autism advocates fought for, and lobbying on government Research investment and it made compulsory for widespread medical education, expert services to be provided, eventually etc.

 

[andyguitar]

Nice is essentially taking care of that “management” aspect so i don’t know really this APPG meeting tweets mean, as MPs usually defer to NICE

I doubt this lot of MPs will defer to NICE.

 

[Cinders66]

I doubt this lot of MPs will defer to NICE.

So you think nice will be unsatisfactory and the MPs will challenge? Dr Charles Shepherd of mea and silly weiraee on the NICE guidelines board

 

[Cinders66]

The ME association says this
@MEAssociation: Excellent meeting this afternoon to re-establish the APPG on ME. Around 30 MPs and staffers in attendance with no shortage of offers to take on officer roles. So full steam ahead with plans to set up a series of meetings to investigate areas of concern (1/2)

https://twitter.com/i/web/status/1217114028729946113

@MEAssociation: - benefits, biomedical research, children, management and NHS services, medical education, severe - and produce an APPG report. - Dr Charles Shepherd (2/2)

 

[andyguitar]

So you think nice will be unsatisfactory and the MPs will challenge?

Looking at its past behaviour I would not put much faith in NICE doing anything much for ME/CFS. I hope I'm wrong. So yes, NIce maybe a dead loss and these MPs will kick up a fuss about it. However the fact that they would do this might deter NICE from coming up with anything to crazy.