Petition: Review treatment of people with ME in Scotland

The issue of CBT/GET treatment and people being able to refuse it; if it's the recommended treatment how are they supposed to make an informed decision. At very least they should be warned of potential of it making them worse.
Also have big concerns about AfME being 'in charge' of re-educating health professionals; this is something that should be done with consensus (particularly the content).
Why don't AfME make it a group project and involve at least the others on the Forward ME group.
 
My current random thoughts on it (more may come later):
  • Generally, I thought it seemed to go well. I don't know, obviously, if it went in the way that Emma and all the other pwME in Scotland wanted it to go but there seemed to be complete agreement that there is a problem that needs to be fixed.
  • As Sly Saint highlights above, the issues surrounding CBT & GET don't seem to be fully appreciated. The argument is still used that, as they benefit some people diagnosed with ME, they should be retained because we don't know who they will harm. My thought on that is what is the acceptable benefit/potential harm ratio? Just because it will potentially benefit what I would suggest is a minority of people diagnosed with ME, why does that make it acceptable to recommend it for the majority who it will potentially harm?
  • The Scottish Chief Medical Officer (I think that was her title), explicitly said that CBT and GET aren't cures. Yet, how often are they presented as such, either explicitly or implicitly?
  • Again, generally, there appeared to be an acceptance that there was still, even after 30 years, insufficient research to tell us anything meaningful about ME. Which surely highlights how the BPS crowd has failed the patient population - they've had all this time and money to research us and they've still failed (at least in benefiting us patients, they may well have benefited themselves in various ways).
 
I thought it was disappointing.

On CBT/GET
There clearly is no intention to remove CBT/GET and the wishy washy stuff about patient consent and being allowed to stop if it's not helping is beside the point. If a treatment is offered, patients will want to try it, and won't know until it's too late that it has harmed them. And justifying not removing CBT/GET on the grounds that 'some people find them helpful' is appalling coming from someone speaking for the government on medical subjects. Hasn't she heard of science?

Another concern - they quoted figures that 50% of GP's in Scotland don't believe ME exists, and 80% of neurologists don't believe it's a physical condition. The answer - we have written to the Scottish medical schools to ask them to include ME in their curriculum but we can't compel them to. And Action for ME is going to provide training modules. I hope that's not Hazel O'Dowd again...

A bit about research funding with no promises made.

A bit about improving care services for pwME in Scotland basing them on best practice. A nurse led service in Fife was mentioned.
 
Disappointed here too, but too much else going on today to try to properly write my thoughts down. Very much agree with what was said above, especially on CBT/GET. This isn't about individual patient choice but about the public health recommendations being made in Scotland.
 
Malvern Gazette, 24.01.2019
(Press Association)
Health Secretary pledges more support for people with ME

Scotland’s health secretary Jeane Freeman has told ME sufferers their experiences matter to her.
Ms Freeman addressed the Public Petitions Committee at the Scottish Parliament on Thursday as it considered a petition calling for a review of the level of support available to people with the condition.

Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), can have a wide range of symptoms including muscle fatigue, pain and neurological symptoms.

According to Scotland’s chief medical officer Catherine Calderwood, however, almost half of the medical profession does not accept ME to be a real condition. [...]
Click to expand...
https://www.malverngazette.co.uk/ne...tary-pledges-more-support-for-people-with-me/

 
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Trish said:
On CBT/GET
There clearly is no intention to remove CBT/GET and the wishy washy stuff about patient consent and being allowed to stop if it's not helping is beside the point. If a treatment is offered, patients will want to try it, and won't know until it's too late that it has harmed them. And justifying not removing CBT/GET on the grounds that 'some people find them helpful' is appalling coming from someone speaking for the government on medical subjects. Hasn't she heard of science?
Click to expand...

This is certainly of concern if government agencies are defending policy on these grounds. These are not considered acceptable grounds for recommendation in any branch of medicine. I think a more closely argued case may be needed. I have written a document in which I have concluded that the provision of both CBT and GET is unethical - for different reasons in each case. It has to do with dishonesty in both cases though. I need to think about this a bit more.
 
Is it just me or is AfME doing more harm than good, just as they always have done? It's getting very frustrating that again and again, just when we get the ears of the right people, AfME get in there and give them the wrong information, harmful to PwME, and pick up large amounts of money for doing so (did I hear 300,000 going to AfME in the House of Commons debate yesterday?) AfME are a part of the problem, masquerading as part of the solution.

Still, at least they pop in here for an hour once a week to "engage". Perhaps, with a bit of support and encouragement, they might feel able to gradually increase that, and actually start listening and taking action on the concerns of the people they are supposed to represent. Or perhaps that's as realistic a hope as gradually increasing activity for PwME leading to any improvement.
 
TiredSam said:
did I hear 300,000 going to AfME in the House of Commons debate yesterday?
Click to expand...
was a couple of years ago (Scotland)
https://www.actionforme.org.uk/news...-health-and-social-care-in-scotland-launched/

another leaflet that needs 'reviewing'
https://www.actionforme.org.uk/uploads/managing-me-a-guide-for-gps-in-scotland.pdf

eta:
Published the year after the SGPS, a large-scale randomised controlled trial
(known as the PACE trial
11
) showed that, when combined with specialist medical
care, some people with mild/moderate* ME-CFS had, at 52 weeks, moderately
improved after taking part in graded exercise therapy (GET) or CBT.
*People with ME-CFS who were house or bedbound, ie. the more severely
affected, did not take part in this trial.
However, several large surveys of ME-CFS patients by Action for M.E. and other
ME-CFS organisations show that many patients reported that GET and, to a
lesser extent CBT, caused them harm. Clearly there’s a discrepancy here which
could be caused in part by the physical therapies referred to in previous surveys
not being so clearly defined or professionally provided. It is also possible that
therapies such as GET are only suitable for a specific sub-group of patients.
Feedback from patients includes being told to undertake activities that are
inappropriate given their condition such as joining a gym or pushing
themselves beyond their physical capabilities too hard or too soon.
Therapies
for people with ME-CFS should only be applied by appropriately trained
professionals who have experience in dealing with the illness
.
12
Experienced therapists tell us that most people they see with ME-CFS are
undertaking too much for their physical state and require support to draw back
on activities and pace. Specialist ME-CFS clinics (see p 12) such as those in
Lothian and Newcastle are now offering GET and CBT strongly underpinned by
pacing support.
12
Their approach is to start patients on a very low, stable baseline of activity
before cautiously introducing small increases in gentle movements and
activities for those who wish. Although commonly called GET, this approach is
more akin to graded activity management than to the rigid programmes to
which ME-CFS patients have sometimes been exposed.
Specialists such as Dr Nancy Klimas are increasingly focusing on the exercise
threshold at which people with ME-CFS energy producing metabolism switches
from aerobic to anaerobic (where the body’s demand for oxygen outstrips
supply). This threshold can be extremely low for people with M.E. and
research
13
suggests that oxygen depletion and the build-up of lactic acid in
muscles associated with frequent switching may be key elements of the PEM
experienced by ME-CFS patients.
CBT
It’s important to reassure patients that offering CBT does not imply that the
underlying cause of the ME-CFS is psychological. The therapist delivering CBT
must have an up-to-date understanding of ME-CFS and its impact on patients.
CBT can be particularly helpful for those who find it difficult to pace their
mental and physical activity. It can also help them to find ways of coping with
issues such as demoralisation, frustration, guilt, anxiety, panic and depression,
and to feel more in control of the illness rather than controlled by it.
Click to expand...
 
Got to agree with all of the concerns raised here about Action for ME's involvement. It sounds as if they're undermining other groups efforts to make progress (not saying this is intentional), and what do we get from them? Seminars for GPs from Hazel O'Dowd?!

We have given Action for ME money to support the provision of information for health professionals. Its website now hosts a series of materials on good practice, and the organisation provides webinars for shared learning, local models of care and good practice. Action for ME has also worked with NHS inform to put information about ME on the NHS inform website.
Click to expand...

http://www.parliament.scot/parliamentarybusiness/report.aspx?r=11911&i=107684
 
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I am sorry to see the level of the discussion in the transcript. I note that I have been misquoted - We took evidence from Professor Jonathan Edwards and, although I do not want to put words in his mouth, my reading of what he said is that there is almost a false correlation—because people benefit from the treatment, the implication is that ME patients benefit from the treatment, - and speakers on both sides of the argument seem to have completely misunderstood the problem (that there is no evidence that CBT or GET work for anyone). It seems extraordinary to me that I spelled out the depth of the problem in no uncertain terms in my written submission and it is as if neither side had read any of it!
 
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