Petition: Review treatment of people with ME in Scotland

Jonathan Edwards said:
She also made particular mention of the evidence submitted by Professor Jonathan Edwards of UCL regarding the ‘building in’ of bias to studies such as the PACE trial, which claim to provide evidence for the efficacy of CBT/GET.

Ah, now I can sew a Scottish Parliament badge on my scout's tee shirt.
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I think you also deserve a wee dram of your favourite tipple:D
 
I spoke to a nice Scottish lady in Holyrood and it seems my file opens in Chrome so I probably do not need to start conspiracy theories. I probably just sent them an old style PDF.

I used to drink the Macallan but I found it went down too quick and I stick to champagne now.
 
I largely keep out of these discussions but it seems to me that, if it is accepted that current intervention strategies (CBT/GET) are at best useless and that existing resources could be 'repurposed' or lost then the lack of effective alternatives leaves us with a dilemma.

What may be the best we can hope for would be to 're'-instate a model which had been used in Belfast City Hospital but has now long been discontinued (I believe). Basically, those with a tentative GP diagnosis of ME/CFS were referred to s specialised unit at the hospital that ran a comprehensive bank of tests to exclude other conditions such as diabetes or cancer that can manifest initially as fatigue. An all clear for other conditions would result in referral back to the GP with a diagnosis of ME/CFS as likely (for what that's worth).

Maybe not what we would ideally wish for but better than nothing and much better than the status quo.
 
This Thursday, 24th January, shows every sign of being a momentous day for ME campaigners, north and south of the border!

As well as being the day of Carol Monaghan's ME debate in Westminster, Cabinet Secretary for Health and Sport, Jeane Freeman, is appearing before the Public Petitions Committee at the Scottish Parliament. The committee is considering three 'continuing petitions', including #MEActionScotland’s petition: PE1690 Review treatment of people with ME in Scotland.

As well as hearing evidence from the Cabinet Secretary regarding the inconsistency of support and care across the health boards, the committee will consider four submissions published since the previous hearing, including a submission from Invest in ME Research and a recent submission from #MEAction Scotland on CBT/GET.

A live webcast of the committee proceedings will be available here: https://www.scottishparliament.tv/ on Thursday morning. The meeting starts at 9am and #MEAction Scotland's petition is the 3rd petition on the agenda. Details of the agenda and submissions are available here: https://bit.ly/2RFG3SQ

If you are able to attend the committee hearing in person, you must reserve yourself a place, either by calling visitor services on 0131 348 5200 or Freephone 0800092 7600 or by completing a ticket request form (available at this link: https://www.parliament.scot/visitandlearn/28754.aspx) Tickets are free. If you are attending in person, please note that campaign t-shirts must NOT be worn in the committee room.
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Just boosting this as happening tomorrow morning!

Jeane Freeman, Scottish Cabinet Secretary for Health and Sport, will be giving evidence on ME to the petitions commitee. Should be fascinating to hear what she says, the questions the committee asks her, and hopefully what she will be looking to do about ME in Scotland.

#MEAction Scotland's best estimate is that it'll start around 10am or 10:30am. I'll try to remember to post here when it does, but rather busy day tomorrow!

Watch live here: https://www.scottishparliament.tv/

@meactionscot will be tweeting about it through the morning too.
 
Watch the #MEActionScotland petition being discussed by the Scottish Parliament Public Petitions Committee as it happens!

A live webcast of the committee proceedings will be available here: https://www.scottishparliament.tv/ later on this morning and the committee meets in the Mary Fairfax Somerville Room (Committee Room 2).

The meeting starts at 9am and #MEAction Scotland's petition is the 3rd petition on the agenda. Details of the agenda and the submissions under consideration are available here: https://bit.ly/2RFG3SQ
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