by Kim Gurav and Susan Cole
#MEAction Scotland volunteers have been called before the Scottish Parliament’s Petitions Committee on Thursday, 7th June to give evidence on their petition to review treatment of ME patients in Scotland.
The petition has received 7,000 signatures, and calls on the Scottish Government to invest in biomedical research into ME, patient care and ME education for health professionals. Not all petitioners are called before the Parliament’s Petitions Committee, so the fact that we have been is very encouraging.
Thank you so much to everyone who has signed and shared the petition – with just a week to go, we still need your help.
It would really strengthen our case if as many constituents/residents as possible emailed the MSPs on the Petitions Committee to explain how important the petition is to them (and thousands of others like them). We’ve provided all the details below to make it really easy.
If your MSP is not on the Committee, please email your own MSP (template provided below) and ask them to support the petition.
TAKE ACTION: If you are a constituent of one of the Committee members:
If you live in the constituency of one of the 3 MSPs on the Committee, please contact your MSP using this template email, and attaching this Parliamentary Briefing document.
Petitions Committee Members – Constituency MSPs:
FALKIRK EAST – Angus MacDonald. [email protected]
ETTRICK, ROXBURGH and BERWICKSHIRE – Rachael Hamilton. [email protected]
STRATHKELVIN and BEARSDEN – Rona Mackay. [email protected]
GLASGOW and SOUTH SCOTLAND – the two remaining members of the committee, Johann Lamont and Brian Whittle, are Regional rather than Constituency MSPs. So anyone who lives in Glasgow can contact Johann Lamont ([email protected])
and anyone who lives in the South Scotland region – see below for map – can email Brian Whittle ([email protected]).
Map showing the area classed as South Scotland:
http://www.parliament.scot/mspfinder/index.html
TAKE ACTION: If you are not a constituent of one of the Committee members
If you do not live in any of the constituencies/regions represented by MSPs on the Committee, please contact your own MSP using this template email, and attaching this Parliamentary Briefing document.
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Meeting with the Petitions Committee:
The petition has attracted a huge amount of support in Scotland and around the world. At the time of writing, 7,000 people have signed. The petition calls on the Scottish Government to invest in biomedical research into ME, patient care and ME education for health professionals.
Not all petitioners are called before the Parliament’s Petitions Committee, so the fact that we have been is very encouraging.
Who will attend from MEAction Scotland?
Attending the Petitions Committee on behalf of #MEAction Scotland will be: Emma Shorter (petition author), Professor Chris Ponting (recent recipient of the Scottish Government/Action for ME PhD funding) and Janet Sylvester (ME Action Scotland volunteer).
Public attendance:
The meeting starts at 10 a.m., members of the public are now able to book tickets to view the committee meeting in the public gallery here: https://www.parliament.scot/visitandlearn/28754.aspx
The meeting will also be broadcast on the parliamentary TV channel and a transcript recorded.
What happens after the meeting?
Following the meeting the Petitions Committee may write to experts and stakeholders for further evidence. #MEAction Scotland is submitting a list of experts and stakeholders for Petitions Committee to contact. We will be given copies of all the stakeholder submissions and will have the opportunity to comment on them.
We need your help to keep the momentum going. Help us hire a full-time, on-the-ground #MEAction team member in the UK to support more work like this by donating to our UK crowdfunding campaign today.
12 thoughts on “Scottish Action – Urge your MSP to Support Petition for ME”
I’ve had ME/ CFS for 12 years . Past 2/3 years being the worst. I’ve not had much help or guidance. I’ve asked to be referred to be seen by Keith Anderson in Fife and have asked for a cross boarder referral to see Dr Julia Newton in Newcastle. Both refused. I simply can’t do another 12 years of this . This disease has robbed me of so much over the years , taking my dignity pride and independence. Is soul destroying, and I am sick and tired of trying to get myself the help I desperately need . This is so unfair and has made me a quite bitter person . Things need to change for us who suffer in silence with this horrendous disease, before more life’s are lost . Doctors are not much help and DWP treat us like fraudsters and scroungers. We have to fight for everything. So difficult when you don’t have the strength to fight on our own . There isn’t a day goes by I don’t think of throwing the towel in but I continue to fight for my family . We need help desperately and guidance !! Funding for research and more raising awareness to the people who don’t understand or choose to ignore just how serious this disease actually is . I pray everyday that one day I might get my life back and be able to work again , but without research and funds a cure is so far away . It really is a absolute living hell! Scotland needs more specialist in this disease so we can have proper guidance and treatment without being treated like hypochondriac’s and scroungers. I did not do this to myself , I took glandular fever in my late thirties and have been sick ever since , I was always a hard working person and don’t deserve to live like this with no support.
I’ve had ME/ CFS for 12 years . Past 2/3 years being the worst. I’ve not had much help or guidance. I’ve asked to be referred to be seen by Keith Anderson in Fife and have asked for a cross boarder referral to see Dr Julia Newton in Newcastle. Both refused. I simply can’t do another 12 years of this . This disease has robbed me of so much over the years , taking my dignity pride and independence. Is soul destroying, and I am sick and tired of trying to get myself the help I desperately need . This is so unfair and has made me a quite bitter person . Things need to change for us who suffer in silence with this horrendous disease, before more life’s are lost . Doctors are not much help and DWP treat us like fraudsters and scroungers. We have to fight for everything. So difficult when you don’t have the strength to fight on our own . There isn’t a day goes by I don’t think of throwing the towel in but I continue to fight for my family . We need help desperately and guidance !! Funding for research and more raising awareness to the people who don’t understand or choose to ignore just how serious this disease actually is . I pray everyday that one day I might get my life back and be able to work again , but without research and funds a cure is so far away . It really is a absolute living hell! Scotland needs more specialist in this disease so we can have proper guidance and treatment without being treated like hypochondriac’s and scroungers. I did not do this to myself , I took glandular fever in my late thirties and have been sick ever since , I was always a hard working person and don’t deserve to live like this with no support.
I have been unable to complete the template etc. It is not very straightforward and is using up too much energy trying to work it out.
It is asking me to seek permission to use it etc.
It would have been more helpful if it had been more simple for us, the people that suffer from M.E.
I have not been able to submit my support or comments as a result.
Hi Eileen,
Sorry you’ve had trouble. You can copy and paste this text into an email, and personalize it where necessary.
Also, you can include this parliamentary briefing with the email: https://docs.google.com/document/d/1ydfvsFisIiE0E2WGBStxIPQUb2Z7sImefcrFo6yLnzs/edit
Dear (Name of MSP)
I am emailing to ask you to support a petition that the Petitions Committee will consider on Thursday 7 June. I am a constituent: PROVIDE ADDRESS TO PROVE THAT YOU ARE A CONSTITUENT
The petition calls on the Scottish Government to review the level of support for people with Myalgic Encephalomyelitis (ME), a neuro- immune disease affecting approximately 21,000 people in Scotland. I wanted to stress how important this issue is to me, personally.
PERSONAL STORY IN HERE – PLEASE WRITE A SHORT DESCRIPTION ON THE IMPACT ME HAS HAD ON YOUR LIFE OR ON THE LIFE OF SOMEONE YOU KNOW/CARE FOR.
The petition has been raised by Emma Shorter of MEAction Scotland, a grassroots, volunteer led organisation. It calls for these areas to be reviewed:
1. There is a real need for significant investment in biomedical research. The Scottish Government has recently provided £45,000 funding over 3 years (£15,000 a year) for a biomedical research PhD: this is the first Government research funding for ME in over a decade. There is currently no effective treatment for ME and research shows that people with ME have lower quality of life than any other disease tested. We urgently need an increased and sustained investment in biomedical research.
2. Many GPs and other healthcare professionals are using outdated guidance on ME and we need to make sure that they are provided with up to date, evidence-based information on the most effective methods of supporting people with ME. We are aware that the Government is not responsible for setting the curricula for training, but we are calling for a review of the way in which NHS Education for Scotland (NES) classifies ME and, in particular, the way in which a current review of ME training materials is being conducted.
3. There is currently one specialist nurse in Scotland (in Fife) and we are calling on the Government to provide funding for health boards for physician-led services in each area.
4. Many health boards (including NES) are recommending a treatment based on Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) for ME. The recommendation of GET/CBT was based on research (the PACE trial) whose results were very controversial and has now been discredited. The majority of patients who undergo GET report finding it harmful. Whilst generic talking therapies, including CBT, are useful in processing the adversity of chronic illness and managing the condition, it is absolutely not an effective treatment for a physiological illness.
The need for help for people with ME is highlighted by the fact that the petition has attracted over 7,000 written and online signatures and more than 400 online comments.
Please let me know if I can provide any further information or evidence of the need for help for people with ME. There is a desperate need for the Government to provide support for people with ME in Scotland and I hope you will support this petition.
I have been unable to complete the template etc. It is not very straightforward and is using up too much energy trying to work it out.
It is asking me to seek permission to use it etc.
It would have been more helpful if it had been more simple for us, the people that suffer from M.E.
I have not been able to submit my support or comments as a result.
Hi Eileen,
Sorry you’ve had trouble. You can copy and paste this text into an email, and personalize it where necessary.
Also, you can include this parliamentary briefing with the email: https://docs.google.com/document/d/1ydfvsFisIiE0E2WGBStxIPQUb2Z7sImefcrFo6yLnzs/edit
Dear (Name of MSP)
I am emailing to ask you to support a petition that the Petitions Committee will consider on Thursday 7 June. I am a constituent: PROVIDE ADDRESS TO PROVE THAT YOU ARE A CONSTITUENT
The petition calls on the Scottish Government to review the level of support for people with Myalgic Encephalomyelitis (ME), a neuro- immune disease affecting approximately 21,000 people in Scotland. I wanted to stress how important this issue is to me, personally.
PERSONAL STORY IN HERE – PLEASE WRITE A SHORT DESCRIPTION ON THE IMPACT ME HAS HAD ON YOUR LIFE OR ON THE LIFE OF SOMEONE YOU KNOW/CARE FOR.
The petition has been raised by Emma Shorter of MEAction Scotland, a grassroots, volunteer led organisation. It calls for these areas to be reviewed:
1. There is a real need for significant investment in biomedical research. The Scottish Government has recently provided £45,000 funding over 3 years (£15,000 a year) for a biomedical research PhD: this is the first Government research funding for ME in over a decade. There is currently no effective treatment for ME and research shows that people with ME have lower quality of life than any other disease tested. We urgently need an increased and sustained investment in biomedical research.
2. Many GPs and other healthcare professionals are using outdated guidance on ME and we need to make sure that they are provided with up to date, evidence-based information on the most effective methods of supporting people with ME. We are aware that the Government is not responsible for setting the curricula for training, but we are calling for a review of the way in which NHS Education for Scotland (NES) classifies ME and, in particular, the way in which a current review of ME training materials is being conducted.
3. There is currently one specialist nurse in Scotland (in Fife) and we are calling on the Government to provide funding for health boards for physician-led services in each area.
4. Many health boards (including NES) are recommending a treatment based on Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) for ME. The recommendation of GET/CBT was based on research (the PACE trial) whose results were very controversial and has now been discredited. The majority of patients who undergo GET report finding it harmful. Whilst generic talking therapies, including CBT, are useful in processing the adversity of chronic illness and managing the condition, it is absolutely not an effective treatment for a physiological illness.
The need for help for people with ME is highlighted by the fact that the petition has attracted over 7,000 written and online signatures and more than 400 online comments.
Please let me know if I can provide any further information or evidence of the need for help for people with ME. There is a desperate need for the Government to provide support for people with ME in Scotland and I hope you will support this petition.
Sign the petition
Sign the petition
Please support. It means so much to so many!
Please support. It means so much to so many!
Thank you for fighting for us all!
I am at the severe end of the scale, so find participation extremely difficult, impossible even!
I would just like to bring to your attention to, (if you haven’t already heard of it), the NHS Centre for Integrative Care. Please research it if you can and in particular about the gradual cutbacks and loss of in-patient services.
Here are some links, hope they are helpful 🙂
http://www.nhsggc.org.uk/patients-and-visitors/main-hospital-sites/gartnavel-campus/nhs-centre-for-integrative-care/
https://www.bbc.co.uk/news/uk-scotland-glasgow-west-38373865
Twitter: @supportNHSCIC
Thank you for fighting for us all!
I am at the severe end of the scale, so find participation extremely difficult, impossible even!
I would just like to bring to your attention to, (if you haven’t already heard of it), the NHS Centre for Integrative Care. Please research it if you can and in particular about the gradual cutbacks and loss of in-patient services.
Here are some links, hope they are helpful 🙂
http://www.nhsggc.org.uk/patients-and-visitors/main-hospital-sites/gartnavel-campus/nhs-centre-for-integrative-care/
https://www.bbc.co.uk/news/uk-scotland-glasgow-west-38373865
Twitter: @supportNHSCIC
Comments are closed.