United Kingdom: Teenager Ella Copley's experience with severe ME/CFS

InitialConditions said:
Not sure if you are aware, but that was BACME's original name until around 2021.
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yes I am aware, and they should be too.
Sly Saint

Post in thread 'United Kingdom: News from BACME - British Association of Clinicians in ME/CFS'

https://www.bacme.info/sites/bacme....modules/image/BACME Annual report Jan2021.pdf

Charity name
British Association for CFS/ME
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Becoming a Charitable Incorporated Organisation on January the 8th 2021
will ensure we can work with services at a more strategic level in more and effective ways.
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From constitution
The relief of sickness for the public benefit by
:
3.1
Championing clinically effective practice in treating
CFS/ME and other primary fatigue conditions
3.2
Disseminating of recent evidence and practice to...
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I think Adam thought of it first!

adambeyoncelowe

Post in thread 'United Kingdom: News from BACME - British Association of Clinicians in ME/CFS'

Ariel said:
This organization will have to change its name - BAMEC?
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Or the British Association of Clinicians for ME/CFS (stays as BACME)?
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and it was 2022 when they changed the name:
InitialConditions

Post in thread 'United Kingdom: News from BACME - British Association of Clinicians in ME/CFS'

BACME is in the process of changing their name (whilst maintaining their acronym) to the 'British Association of Clinicians in ME/CFS', which I think is a small but positive step. This is now reflected in the text on their homepage (under 'Who Are We?'), though much of the material on the site will still use the old name.

https://www.bacme.info/#about
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I also came across this little gem praising the Leeds inpatient treatment for those with CFS, referring to the crass article by Alastair Miller, Garner et al....

physioupdate.co.uk

Leeds-based multidisciplinary team – which includes physiotherapists – delivers 'outstanding' service to people with ME/CFS - physioupdate

Highly trained and experienced physiotherapists are playing their part in delivering care to patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) at a specialist unit in Leeds. The work of the Leeds National Inpatient Centre for Psychological Medicine is highlighted in an...
physioupdate.co.uk
 
MEMarge said:
I also came across this little gem praising the Leeds inpatient treatment for those with CFS, referring to the crass article by Alastair Miller, Garner et al....

physioupdate.co.uk

Leeds-based multidisciplinary team – which includes physiotherapists – delivers 'outstanding' service to people with ME/CFS - physioupdate

Highly trained and experienced physiotherapists are playing their part in delivering care to patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) at a specialist unit in Leeds. The work of the Leeds National Inpatient Centre for Psychological Medicine is highlighted in an...
physioupdate.co.uk
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This article seems to be a summary of the Miller et al opinion piece that appeared in the BMJ earlier this year., which we extensively discussed in this thread. It extols the wonders of hope, specialist personalised care and brain retraining without any meaningful evidences, and seeks to undermine the current NICE ME/CFS guidelines.

Certainly this suggests that the Leeds in patient service is not somewhere anyone with severe ME/CFS should go anywhere near.
 
Peter T said:
This article seems to be a summary of the Miller et al opinion piece that appeared in the BMJ earlier this year., which we extensively discussed in this thread. It extols the wonders of hope, specialist personalised care and brain retraining without any meaningful evidences, and seeks to undermine the current NICE ME/CFS guidelines.
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Which makes the fact that they keep being told that it's them and their wretched ideology that kills all hope so much more bizarre. They seem to simply prefer to believe whatever version of reality they want to be true, and it doesn't matter that there are literally tens of thousands of articles, in English news media alone, voicing exactly the opposite of that, that it's them causing the very rational lack of people patients have.

It's all so damn absurd, completely dystopian. They are like multibillionaire aristocrats raving about the virtues of wealth and how the poor should just work harder even as they work to corrupt the system to grab everything for themselves. A level of delusion fully comparable to the most unhinged conspiracy fantasy communities.
 
V.R.T. said:
Well, that's as illustrative as anything of why the BACME approach has to go.
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I'm actually quite shocked looking at the date of this document being 2022.

I didn't know BACME had produced a primary care guide but for it to be done 1yr after the new guideline makes it feel it was specifically timed in wuch a way it would seem an update that was based on this new approahc etc.

But maybe I'm wrong - is the guide full of old psychosomatic ideas and worse?
 
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OK looking briefly at this: https://bacme.info/wp-content/uploads/2022/12/BACME-Primary-Care-Guide-to-MECFS.pdf

So whilst the initial sections seem not so bad as expected (I went to the PEM one first - but then I guess there is only so much when the new guideline is recent that you can get away with diverting from what is written down there as a definition before it is obvious you are treating a different illness?)

page 13 onwards where the pacing and symptoms ie more related to the idea of therapy bits are it seems to not be able to even 1yr after the guideline and assessment of their research they base this on was released just be the same old thing hidden with the idea of doing it gently making it OK

Pacing section:
Pacing Pacing is the basic principle that underpins ME/CFS management. Complete rest will not make ME/CFS better – although patients will need to rest when their symptoms are severe, complete rest in the long-term will result in deconditioning and escalation of fatigue.

Spending long periods of time lying down will result in the Autonomic Nervous System responses becoming more dysregulated in response to the gravity demand of being upright.

Equally, increasing exercise or other activities will not make ME/CFS better and can often trigger episodes of Post-Exertional Malaise which may lead to further dysregulation and cause an escalation in a patient’s symptoms which can sometimes persist long-term. Finding a careful balance between rest and activity throughout the day, every day is the basis of pacing.

The concept of rest may need to be clarified to ensure patients are relaxing and resting both mind and body. Patients will need encouragement to learn to rest frequently throughout the day, a helpful phrase is ‘Rest before symptoms increase’.

When planning activities, it is helpful to break tasks down into short sections interspersed with rest periods, and change between different types of activity. For example: do 10 minutes of housework followed by 10 minutes rest followed by 10 minutes of reading followed by a further rest period. How pacing is done will depend on each individual patients’ symptoms, their personal demands (e.g., work, school, care roles) and also the stage of their illness.

In the early stages of the illness the primary aim is to achieve stability so the same level of activity can be performed every day without making symptoms worse. Once this has been achieved some patients can start to carefully grade up their activity.

Grading up is done slowly over a long period of time with monitoring to ensure it is not causing any escalation in symptoms. Some patients can also experience relapses and it is important they learn to recognise them and have strategies in place to manage them.
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One aspect near the end that strikes me as setting pwme up for targeting is the following, which they would if 'experts' know by now will cause that 'well if you aren't better by now' attitude, and is inferring that their solution works is:

In the early stages of the illness the primary aim is to achieve stability so the same level of activity can be performed every day without making symptoms worse. Once this has been achieved some patients can start to carefully grade up their activity.
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SO when combined with their unevidenced start about how too much rest is the cause of deconditioning and making their fatigue worse, becomes very devisive indeed about 'who is to blame and how/why it got so bad'?
 
I thought the following at the start of the symptom management section on p14 was interesting:

Symptom management It can be helpful to adopt a problem-solving approach to the multiple symptoms a patient may be struggling with. Consider asking them to prioritise which symptoms are causing the most distress or interference in daily life and see what creative solutions you can develop together.
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Particularly if old ideas and old therapies are still being fed to GPs as 'helpful for other things' without the underline that they have been tried in trials to the point of exhaustion and found no proof of help but some of hamr in pwme. They must know many might try old existing ideas above being truly 'creative'?

I think the following feels a bit leading too, when combined with the above 'intro para' (in the inference that antidepressants might help, and not allowing the mental health ideas to dissipate)
There are no unusual or specific medications that are recommended for ME/CFS; most of the prescribing will be with common agents such as SSRIs for mood symptoms, amitriptyline /simple analgesics for pain.
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Exercise section then starts with:

Exercise Deconditioning is not the cause of the symptoms of ME/CFS, but unfortunately the loss of muscle bulk and fitness which can happen because of the fatigue will aggravate the situation.
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and then somehow makes it sound like exercise is a cornerstone of 'not letting them get worse' to my reading.


Severe ME/CFS

I thought the following at the end of this section was interesting

If a person with severe ME/CFS requires hospital admission it can be helpful to provide information to the hospital staff regarding their care requirements so adaptions can be made where possible in the hospital setting e.g., to minimise exposure to noise and light where possible.
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Prognosis

this section has the following detail that I don't know where they got these 'facts' from but they seem to be presented as such (along with noting having an optimistic approach to its management despite it normally being a long term condition)

It has been suggested that approximately 5-20% of people with ME/CFS may eventually make a full recovery, but this may take years and involve making significant life changes.

Around 60% of people with ME/CFS may see improvement in symptoms and/or level of function over time but will need to continue to manage their condition.

Approximately 20% of people with ME/CFS continue with long term debilitating symptoms.

A proportion of patients will recover sufficiently to a good level of occupational / social function but may experience relapses or setbacks triggered by a number of factors such as viral or bacterial infections or other illnesses and significant life stresses.
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It then has a para about 'changing ones idea about what recovery looks like' but without being honest that I think that 5% recovery actually includes that 'in the sense of having changed ones idea of what recovery looks like'?
 
bobbler said:
But maybe I'm wrong - is the guide full of old psychosomatic ideas and worse?
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You are not wrong.

People need to understand and accept that BACME and their like-minded colleagues have not changed their view of ME/CFS one iota, and never will. All they have changed is their sales pitch, and only marginally, simply to adapt to the changed political realities around ME/CFS.

They remain completely wrong, fundamentally dishonest about it, and unconcerned with patient welfare, and should be shut down ASAP.
 
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