Please support our petition!
#MEAction Scotland volunteers have submitted a petition to the Scottish Parliament. Anyone from any country can sign! The petition calls on the Scottish Government to undertake a review of the treatment of people with ME in Scotland. The aims of the petition can be summarised as follows:
- Investment in biomedical research and creation of a Centre of Excellence
- Ensuring healthcare professionals’ training and education materials reflect the latest scientific evidence
- Provision of specialist care for patients and discontinuation of the harmful treatments GET/CBT
A little about ME in Scotland: ME is a neuro-immune disease that affects millions of people worldwide, an estimated 21,000 of whom are in Scotland. 25% of patients are so severely affected that they are bed bound and have a very poor quality of life. There are no specialist consultants in Scotland, and for the past decade the Scottish Chief Scientist Office (CSO) has spent nothing on biomedical research.
We urgently need your help, whether you have M.E, know someone who does or even if you’ve never heard of it before!
Three ways you can help:
- Sign the petition. It doesn’t matter if you don’t live in Scotland, you can still sign here.
- Share this video on social media. Share this url: https://youtu.be/wG5g4M7KWv8
- Collect signatures. We have sign-up sheets and a Scottish fact sheet for people to collect signatures in the real world. These need to be sent to Emma Shorter, 16 Mayville Gardens, Edinburgh. EH5 3DB by 24th May in order to be included in the final signatures total.
It’s time to change the lives of all the missing and forgotten people with ME. We are not lost yet.
11 thoughts on “Sign the Scottish Petition for ME – anyone can sign”
I am curious as to the nature of the “harmful treatments GET/CBT,” particularly since the only “CBT” I have heard of is Cognitive Behavioral Therapy, but I’m sure that is not what you are referring to. Thank you:-)
@Terry Wilson. CBT insinuates that what is wrong with patients is “simply in their mind” and therefore can be cured by therapy and talking about it. This is a very outdated modality of treatment and so very wrong. It’s like telling someone with diabetes, heart disease or cancer that if they just have positive thoughts, their disease will go away. ME is a very serious, very real, very complicated disease. Those of us who have it can’t think ourselves well. There needs to be far more money put into research, and into educating medical professionals about the truth and horrors of this disease.
CBT is Cognitive Behavioral Therpay.
GET is Graded Exerise Therapy.
The foundation for these therapies is that ME is caused by “fear of activity” and decondition, which is far from the real causes for ME.
Can you expand and elaborate on “Provision of specialist care for patients and discontinuation of the harmful treatments GET/CBT” ?
What is harmful to persons suffering with ME/CFS with regards to GET and especially CBT ?
Much thanks
CBT does indeed mean Cognitive Behavioral Therapy which can be helpful with COPING with ME/CFS which is a very real disease as it can be with many other life situations. My understanding is that in having it as a treatment recommendation it is implying (if not outright stating) that ME/CFS is a psychological illness as many still erroneously and dangerously believe. We just think we’re sick- it is the result of an erroneous thought that needs to be changed. There is a huge difference between these two uses.
GET refers to Graded Exercise Therapy which is what it sounds like. It is, can be very harmful to ME/CFS patients who are absolutely exertion intolerant, that includes physical, cognitive, and emotional exertion. This is I think the hallmark feature of this cruel illness. Everything we do requires exertion- brushing our teeth, sitting and thinking about something or crying. And we pay for that exertion, depending upon that fine elusive line between what we can do and what is too much, with PEM, post-exertional malaise. Lastly, in using GET as a treatment recommendation it is once again implying or outright stating that this illness is of our own doing- that it is simply the consequence of deconditioning (we are “lazy” is what we all too often painfully hear.)
Sorry, I stepped up on my soapbox.
My couisn Suzanne suffers with this. It breaks my heart we have no way to help her.
To Lisa Harms
If it’s a soapbox you’re on please stay there. Well said with a accurate description of deplorable treatment for a truly torturous condition. Carry on.
Why thank you! I don’t usually post comments (low self confidence!) but I am so emotional and passionate about this awful disease to pass up the opportunity. I was just checking on the current treatment recommendations given by the very prestigious Mayo Clinic- a placed I use to hold in high esteem and as an authority. They still state that CBT and GET are the recommended and proven treatments. I couldn’t believe their dangerous ignorance!
Lisa
Your welcome. And i agree with your most recent post. Glad you voiced your opinion. I too do not usually post or get involved. Too ill for one. But like you i have a fire in my belly about our abuses. I am putting nearly all my energy, though it’s not much, into ME/CFS activism. It feels important. It feels like a wave of momentum is building. I want to be a part of it!
MsLettie, me too! Well put! You described so very accurately that fire inside. I’ve been sick for 30 years with a progressive form of ME. Thirty years in which nothing has changed. I’m also very debilitated but energized (in our so limited way!) by the ME movement. I’ve realized how angry I am at how we’ve been and are being treated. I’ve tried to be as involved as possible. I’m so tired of feeling so alone with this disease. How are you able to participate? Maybe I can learn from you. Take care.
A very nasty painful disease no other words and it needs to be realized as such by the doctors people and most of all the goverments.
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