Petition: Review treatment of people with ME in Scotland

E

Emsho

Established Member (Voting Rights)
Please help Scottish ME patients by signing this petition to the Scottish Parliament, calling for a review of the treatment of ME patients in Scotland, with a view to invest in biomedical research, education and care.

Read the full details of what we're asking for here, anyone can sign: http://www.parliament.scot/GettingInvolved/Petitions/PE01690

We've created a video to help spread the word about the petition and educate folks on why they should care about ME patients:

It would be wonderful if you could sign the petition and share video!

Also! Anyone know how to embed youtube videos into facebook/twitter posts? We've been trying for the past day.. :banghead:
 
Emsho said:
Please help Scottish ME patients by signing this petition to the Scottish Parliament, calling for a review of the treatment of ME patients in Scotland, with a view to invest in biomedical research, education and care.

Read the full details of what we're asking for here, anyone can sign: http://www.parliament.scot/GettingInvolved/Petitions/PE01690

We've created a video to help spread the word about the petition and educate folks on why they should care about ME patients:

It would be wonderful if you could sign the petition and share video!

Also! Anyone know how to embed youtube videos into facebook/twitter posts? We've been trying for the past day.. :banghead:
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Good info, will share with family and on other parents' forums
 
Trish said:
And welcome to the forum, @Emsho, I'm glad you've found us and joined.
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Thanks, never made a video before so it took a ridiculously long time! Luckily have got some very talented friends.

And thanks for the welcome, I found the forum through your weekly round ups which have been so useful!

@Amw66 that would be really helpful thank you :)
 
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Andy said:
Now up to 3,232 signatures.

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With offline and online signatures combined we have over 5,000 :emoji_champagne:

Although the petition is still open for signatures, and has not been lodged yet, we have been contacted about the next stage (submitting evidence). I’d like to chat to someone running S4ME before posting anything else- @Andy is that you? I’m not sure who to dm.
 
Yes, I PM'd Emma in regard to the post directly above.

From the MillionsMissing Scotland Facebook page,
Some great news from the Scottish Parliament about our petition - Emma Shorter on behalf of MEAction Scotland has been invited to meet with the Petitions Committee and give oral evidence on Thursday 7th June.

This is earlier than we expected and not every petitioner is asked to give evidence, so we are delighted that we'll have this opportunity to discuss the issues with the Committee.

Members of the public will be able to book tickets to view the committee meeting in the public gallery. It will also be broadcast on the parliamentary TV channel and a transcript recorded.

Purpose of the meeting:

The purpose of the meeting is for the Committee to give our petition initial consideration and decide what action to take. We will give a five minute introductory speech and the Committee will then ask questions - the whole session should last around thirty minutes.

Professor Chris Ponting, Chair of Medical Bioinformatics at the University of Edinburgh, will join our team at the meeting to talk about the need for biomedical research on ME.

What happens after the meeting:

Following the meeting MSPs may then write to experts and stakeholders for further advice. We are submitting a list of experts and stakeholders for them to contact. We will be given copies of all the stakeholder submissions and will have the opportunity to comment on them.

How you can help:

We will be posting the names of the MSPs on the Committee and asking you to contact them if you live in their constituency. We’ll shortly provide some information for you to send them, and a template email you can adapt. We know how important contact from constituents is for MSPs, so we are really hoping this will make a strong impact.
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Next Action (not sure if should be new thread or not!) Scottish people, please contact your MSP,especially if your MSP is on the petitions committee that we're meeting with next week. Constituency MSPs on the committee are from FALKIRK EAST, ETTRICK, ROXBURGH and BERWICKSHIRE and STRATHKELVIN and BEARSDEN The two Regional MSPs are from GLASGOW and SOUTH SCOTLAND meaning anyone from Glasgow and South Scotland can contact them. Short parliamentary briefing and more details available here: https://www.meaction.net/2018/06/01/scottish-action-urge-your-msp-to-support-petition-for-me/
 
Ahead of our meeting with the Scottish Government Public Petitions Committee on Thursday, we'd like to say a huge 'thank you' to all those who submitted evidence to the committee in support of our petition aims.

The list of people who gave evidence is an impressive one. Special thanks go to Professor Chris Ponting of Edinburgh University, not only for his submission but also for his invaluable contribution during our initial appearance before the committee in June. However, we are also incredibly grateful to Professor Jonathan Edwards of UCL and Michael Van Elzakker, a researcher at Harvard Medical School and Massachusetts General Hospital.

Research groups Invest in ME Research and Science for ME offered additional, up-to-date scientific evidence, particularly in respect of the discontinuation of GET/CBT and campaign group, Action for M.E. offered across the board support.

Particular mention should go to those PwME who submitted evidence or shared their experiences of deterioration as a result of undergoing GET. Testimonies or evidence from Andrew Farrington, Lee Stocker and Stuart Brown are among those published by the clerk to the committee so far, but we are extremely grateful to everyone who contributed their story.
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An excellent Scottish Parliament Petitions Committee meeting this morning reviewing evidence submitted in support of our petition! Overall a very encouraging outcome and a step forward for the ME patient community in Scotland and worldwide.

The petition was submitted by Emma Shorter on behalf of #MEActionScotland in June of this year: ‘Review treatment of people with ME in Scotland’.

Based on the evidence submitted by various stakeholders and the responses from the various public bodies, the committee has now decided to invite the Cabinet Secretary for Health and Sport, Jeane Freeman OBE, to give evidence and discuss key issues!

The committee acknowledged the strength of submissions from people with ME and noted the huge discrepancy in the way health boards in Scotland deal with ME. The disappointing response from health boards was highlighted - only 5 out of 14 boards responded - so the committee has stated they will once again request that the remaining health boards submit evidence.

The convener of the committee Johann Lamont lauded the evidence and the strength of submissions from MEAction Scotland, Prof. Jonathan Edwards, Action for M.E. and Invest in ME. This evidence highlighted how serious the issues are and the urgent need for the Government to explain what it is doing to help people with ME.

Watch the full meeting here starting at 09.50:
https://www.scottishparliament.tv/…/public-petitions-commit…

#pwME #MEAction #MillionsMissing
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In her introduction to the review of evidence submitted in support of #MEAction Scotland’s petition, committee convener, Johann Lamont, remarked that the responses received appeared to justify the concerns expressed by the petitioner about an ‘inconsistency of approach, or awareness, across healthboards’. She also mentioned that the submissions received from individuals regarding their experiences of deterioration following CBT/GET ‘appeared to be supported by stakeholders including Science for ME and Action for ME’.

She admitted to being struck, both by the number of responses received and the powerful arguments which they advanced.

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.

In drawing the meeting to a close, Ms Lamont recalled the ‘scepticism’ that she remembered surrounding ME when she was a younger woman and commented on the fact that experience of such disbelief featured very strongly in the evidence submissions. It was, she suggested a question to ask the Cabinet Secretary: are Health Board responses and provision informed by that thinking still? And to what extent do the Scottish government recognise that that’s a problem?

Watch the full discussion here starting at 09.50:
https://www.scottishparliament.tv/…/public-petitions-commit…

#MEAction #MyalgicE #pwME #Holyrood #Petition
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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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