Petition: Review treatment of people with ME in Scotland

Sasha said:
Current medical advisors are Prof Julia Newton and Dr Gregor Purdie:
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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.

 
Jonathan Edwards said:
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.
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Is there a procedural method to enable a " right of response" ?
 
@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!
 
Grant income included a rebate of £73,867 from QMUL as a rebate from the Brain in Pain study which concluded at significantly lower cost than originally expected – see p 29
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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
 
Sly Saint said:
just listened to the latest ME show podcast.
CS says that he and Greg Purdie and someone else were recently involved in addressing the subject of 're-educating' clinicians.
I wonder if Greg Purdie has really read all this info being put out by AfME and endorsed it?
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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.
 
Amw66 said:
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.
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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.
 
Jonathan Edwards said:
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.
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The problem with this attitude of doctors is that the BPS psychs have conned them into believing that what they are offering with their directive CBT and/or GET is actually a 'treatment'. If you boil in down to its essentials there are several possible approaches for patients to take to activity and rest and whether to listen to or ignore increases in symptoms:
.........................................

1. Rest completely until you feel better. (aggressive rest therapy)

2. Listen to your body, whatever you feel able to do without increasing symptoms, do 50% of that. (a version of pacing)

3. Listen to your body, rest when you need to, keep activity within your energy envelope. (pacing)

4. Listen to your body to some extent, plan a daily routine mixing different levels of activity and building in regular rests to keep activity within your energy envelope. Stick to this plan, but keep push at the boundaries to see if you can expand it by up to 10% at a time.
(the Action for ME version of pacing, APT, GET-lite)

5. Stop listening to your body, stop resting so much, start exercising, add 10% more activity each week, ignore any increase in symptoms that result, don't let symptoms stop you doing the extra activity. (GET)

6. A combination starting with 3 or 4 to find your baseline, then move to 5 to build up your activity. (GET)

7. You're not sick. Go to the gym. (what a lot of doctors tell patients).
..........................

All of these and any combination of them could be described as 'treatment'. They all involve learning a new way of behaving that is different from what the patient did when they were healthy.

The fact that the BPS people dress up their chosen method from this list as CBT or GET and require patients to attend a series of 'treatments' or 'therapy' sessions in order to persuade patients to follow their chosen option doesn't make it more of a 'treatment' than any of the others.
 
Amw66 said:
Is there a procedural method to enable a " right of response" ?
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a formal letter to those who spoke clarifying the misunderstanding would at least ensure they were aware of the issue and maybe it would be appropriate to request a correction or footnote added to the public record of the hearing.
 
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
In Scotland, as a result of the 2018 petition by #MEAction Scotland, the team met with the Scottish Health Council this week to begin a gathering views exercise and with the Scottish Chief Science Office to discuss research in Scotland. Furthermore, the health secretary has asked the Scottish Public Health Network to update their 2011 needs assessment. As part of #MEAction Scotland's work, the Neurological Action Plan for Scotland is being reviewed and updated with the submissions made by #MEAction Scotland and other ME stakeholders.
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MEAction Scotland
· 31 August ·


The representative from the Chief Scientist Office essentially said that they were open to research applications for ME, they just weren’t receiving any. He was also adamant that it was not their role to solicit research funding, and that attracting researchers and encouraging research was very much our job.
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I know this isn't something most people probably want to hear, but it is something I think we need to keep in mind.
 
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"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…"

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