Petition: Review treatment of people with ME in Scotland

Some info about AfME at Charity Commission here:
http://beta.charitycommission.gov.uk/charity-details/?subid=0&regid=1036419

 

Latest Annual Report & Accounts:

http://apps.charitycommission.gov.uk/Accounts/Ends19/0001036419_AC_20170331_E_C.PDF

 

I see that Gregor Purdie was involved in the Scottish Good Practice Statement on ME/CFS. The early sections of that on assessment are pretty good - a lot better than the RCGP course. But the management section blathers about 'holistic' approaches and ends up endorsing CBT and GET.

The key problem I see again is this myth that you treat people according to their specific needs because some people respond to things and others don't. This misses the point that so far we have no evidence that anyone 'responds' in the sense of getting better because of a treatment.

The charitable interpretation here seems to be that Purdie understands that CBT and GET are probably a waste of time but has felt pressured to compromise. We really need a clean break with that sort of muddling along approach. Progress has been made but we are still in a situation where everyone in the Scottish Parliament has missed the point.

 

I can't find any details of where money actually comes from.

 

Is there a procedural method to enable a " right of response" ?

 

See p. 14 of this annual report for 2017/18:

https://www.actionforme.org.uk/uploads/2017-2018-trustee-report-accounts.pdf

 

@Jonathan Edwards, on p. 15:

Funding sources The principal funding sources for Action for M.E. are charitable trusts, community fundraising and events, Supporting Membership income, and individual gifts. Other funding sources include Big Lottery Fund, Scottish Government grants, Gift Aid, legacies and Christmas card sales. We continue to ensure a broad enough funding base to mitigate potential risk.

I don't see a breakdown of that but I haven't looked very far!

 

Yes, but who are the 'trusts and companies'? Who gave the grants? etc.

 

Yes, exactly. @Action for M.E., can you please point us at detailed information on your sources of income, that is, how much money comes from each source, and what the name of each donating body is?

 

Looks as if they are quite cosy with Scottish government at least.

I wonder who these mysterious Trusts are?

 

I noticed this here: https://www.actionforme.org.uk/uploads/2017-2018-trustee-report-accounts.pdf

It's a central sensitization study, and White is a coauthor. The lead author describes his interests as follows:

• Pain phenotypes in functional somatic syndromes and their association with childhood adversity
• Mapping the pain matrix with a paradigm of functional pain
• The Brain in Pain: The neurophysiology of chronic idiopathic pain
• Neurophysiology of pain in Chronic Fatigue Syndrome

https://www.qmul.ac.uk/wolfson/about-us/staff/profiles/bourkejulius.html

 

Greg Purdie did back up a lothian clinic' s opinion that GET and CBT seems to help some people at a seminar i went to a couple of years ago. I was a lot less knowledgeable then to engage in meaningful discussion around this.

 

I am not surprised. Purdue may find it very difficult to get his head around the idea that no treatment may be better than treatment. A lot of doctors find this very hard to swallow. A lot of doctors also automatically assume that if patients get better it will be because of treatment, rather than despite it. I can see that a charity with a 'motherly' sort of approach is going to find it hard to come out and say that current services should just be shut down. It is all a matter of human nature and muddled thinking. But it is also self-deception and bad care. I have spent my life surrounded by it, but in other fields it has been shown up for what it is and dealt with. Time for ME.

 

https://www.meaction.net/2019/01/29/scottish-parliament-committee-hears-petition-on-me
https://twitter.com/user/status/1090430273546784768

 

Not sure if this is the place to post this, or whether it's appropriate:

Source: Action for ME

Date: January 30, 2019

URL:
https://www.actionforme.org.uk/news/scottish-parliament-discussion-of-me-during-petitions-committee/

Scottish Parliament discussion of M.E. during Petitions Committee
-------------------------------------------------------

Thursday 24 January was a busy day for the M.E. community with debates being held in both UK and Scottish Parliament.

The Scottish Petitions Committee was attended by Scotland's Chief Medical Officer, Catherine Calderwood and Scotland's Health Secretary, Jeane Freeman in response to a petition created by Emma Shorter of ME Action Scotland last year. Discussions began with the following statement from Jeane Freeman: 'I'd like to start by making a fundamental but important point to people living with M.E. in Scotland and that is I believe you. I believe that this disease is a limiting disease in terms of quality of life. I hear what you're saying to us and your experiences matter to me as Cabinet Secretary of Scotland.'

Following from this, the committee continued to host a positive discussion regarding issues that people with M.E. face. When discussing M.E. and the issues that surround scientific understanding and treatment of the condition Catherine Calderwood stated: 'We have something that is, in scientific terms, somewhat unusual in that we haven't got a test, we haven't got biological markers... We can't do a blood test or an imaging test that comes back where the report says 'this person has M.E.' and therein lies much of the issue. In not having a means of diagnosing, except by exclusion, we also don't have a cure... so we haven't got a mechanism by which to create medication or find a treatment through some usual modality through medication.'

More at link

 

From an #MEAction UK email sent to me today

 

MEAction Scotland
· 31 August ·

I know this isn't something most people probably want to hear, but it is something I think we need to keep in mind.

 

"This report summarises what people living with ME in Scotland told us. Some were able to describe positive experiences of diagnosis, compassionate support and ongoing care. However many respondents outlined a less positive experience, including what they described as:

• lengthy diagnosis
• unnecessary tests
• a lack of information about the condition
• an absence of person-centred care planning and delivery
• low levels of knowledge about the condition among staff, and
• a lack of belief when they interact with services.

Many of the respondents felt isolated and reported that they were left to get on with managing their condition with limited input or support.

The responses received have been shared with colleagues in Scottish Government to help shape their work in establishing an evidence base around the care and support for patients with ME."

https://www.hisengage.scot/informing-policy/gathering-views/people-living-with-me/


"In 2019, the Scottish Government asked @HISengage to find out how people living with #MyalgicE experience health and social care, and what support they would like to see in place. HIS have today published their final report which you can read here: hisengage.scot/informing-poli…"