#MEAction Scotland News

LibdemVoice article including Emma Walkers proposal speech.

Imagine if, sitting in your seat here at conference, you suddenly begin to feel ill. Your vision blurs, you head begins to pound, and it feels like you may be having a heart attack. Maybe you collapse or you can’t remember your name. Your body has essentially crashed. Although it may take weeks. months or even years for you to receive a diagnosis, you are now one of the 21,000 people in Scotland living with M.E. For so many this is exactly how it starts. What’s more – there is no test, no cure and no proven effective treatment.
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https://www.libdemvoice.org/scottish-conference-passes-groundbreaking-policy-on-me-58569.html
 
After many, many months of writing, editing and revising, #MEAction Scotland is finally ready to launch its manifesto! Thank you to all the volunteers and members of the community who have added their ideas and thoughts to shape this document. The purpose of this document is to highlight those areas where we feel our lobbying activity can most effectively bring about the improvements still so badly needed in the treatment of people with ME.

Key issues on which lobbying will focus:

  • Discontinuation of PACE-type Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) in Scotland
  • Investment in biomedical research
  • Education and training of healthcare professionals
  • Increased accessibility to and investment in care
Read the manifesto
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https://www.meaction.net/2018/10/28/meaction-scotland-manifesto/
 
Good work, #MEAction Scotland. It is a well thought out and well reasoned document.

It is also heartily depressing with it reminder of what a mountain we have to climb all across the UK. At the moment everything to do with ME in the health service is horribly wrong, from medical education, to guidelines, to specialist, GP and community care to research funding.
 
"Specific demands we will be making include the immediate removal of CBT/GET from the Scottish Good Practice Statement.

Whilst we support the use of appropriate psychological therapy designed to support patients coping with chronic disease, we condemn the use of CBT based on the psychosocial model, which asserts that ME is perpetuated by patients’ beliefs and “deconditioning”.

Furthermore, we will seek removal of PACE-style CBT and GET from all education and training materials while bringing pressure to bear on organisations to ensure that revised resources comply with the classification of ME by the World Health Organisation."

:emoji_clap::emoji_clap:
 
Under a quid a week, unless the Scottish don't have paid holidays, in which case it's a quid a week.

Researchers and labs must be cheap in Scotland, or expected to be so.

Why such a ludicrously low figure, as an ask? I can understand why, politicians being what they are,they may not be awarded more than that, or even that, but to ask for so little.........befuddles me.
 
Wonko said:
Under a quid a week, unless the Scottish don't have paid holidays, in which case it's a quid a week.

Researchers and labs must be cheap in Scotland, or expected to be so.

Why such a ludicrously low figure, as an ask? I can understand why, politicians being what they are,they may not be awarded more than that, or even that, but to ask for so little.........befuddles me.
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How is it a £1 a week ? 1 million divided by 52 is £19 ,000. Sorry I see you are meaning per person. Well in context across the UK aLzheimers gets £88 per person per year or was until recently , it might have significantly increased, so its half of that. £1 a week pp is far better than the £1 per year pp biomedical research spending we have averaged in UK past ten years.
 
I think the point about funding in proportion to disease burden is probably quite difficult for any politician or medical establishment figure who might actually have some influence on funding to argue against they would look pretty pathetic if they do. If 30x that was actually given to make up for historical neglect what would it actually get spent on right now. I think £1m for Scotland would be great and put pressure on situation in the rest of the U.K.
 
This might be my fault. In support of the petition to the Scottish Parliament I said:

It would be proportionate for at least one centre in Scotland to have an annual research budget for ME of at least £500,000-£1M.

But I did say at least.

Scotland has a track record for being ahead of the game. £1M in Scotland would make it look mean not to have £10M for the UK. That would be enough to cover a lot of useful work. I think this is pitched at a credible level.
 
Jonathan Edwards said:
This might be my fault. In support of the petition to the Scottish Parliament I said:

It would be proportionate for at least one centre in Scotland to have an annual research budget for ME of at least £500,000-£1M.

But I did say at least.

Scotland has a track record for being ahead of the game. £1M in Scotland would make it look mean not to have £10M for the UK. That would be enough to cover a lot of useful work. I think this is pitched at a credible level.
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Please have more " faults" !
 
First search result gave a CSO budget of just £69million.
https://www.cso.scot.nhs.uk/about/

So proportionally this is like looking for around $541 million or so from the NIH (research budget of $37.3 billion in FY2018, the first search result). MS gets less than $100 million the last time I checked.

I’m not saying it’s wrong to call for this amount just putting things in perspective. The total research budgets in many/most countries are relatively small.
 
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