BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

ringding said:
Not trying to pick a fight, but just to give the benefit of my experience of one of these clinics.
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Not at all & I'm really glad to hear that your experience was positive. This is the kind of support that is badly needed.

This is the issue as I see it. Not every clinic is bad & from your report this one sounds good. The snag is there are still bad ones out there. While NICE guidelines are what they are and the status quo remains even the good clinics still have to present themselves as toeing the party line.

This means that good, supportive individuals, working hard and making a difference are tarred with the same brush as the likes of Gladwell & co. The healthcare staff in these good clinics don't speak out and I can see why - they might be stopped from quietly doing what's needed.

The problem we're left with is the patient doesn't know until they get there & then it might be too late.

Tis good to highlight that these guys are out there and ponder how we can address the issue of them having to fly under the radar.
 
Jonathan Edwards said:
I for one would be very happy to believe that multidisciplinary team clinics were beginning to provide sensible and sympathetic advice and care.

The problem as I see it is that if BACME members want to convince us that they know what they are doing they need to say exactly what they are doing and on what basis they justify it. When I gave evidence to NICE one thing I pointed out was that it would be impossible for health professionals to know that they were doing things the right way without some sort of formal trial. From what we can see of the published trials most improvement is likely to be independent on any specific intervention.

I have been disappointed that health care professionals seem to take an arrogant position indicating that they think they somehow have training that allows them to judge whether they are doing things right. They need to be much more self-critical. The first step is to give a clear description of what they think should be recommended instead of PACE type procedures and why they think so. Vague statements about activity management are no good.

Common sense suggests that for the foreseeable future the best care is going to have to be based on experience of feedback from patients, free of any prior theorising. There are not going to be any trials for a good while and valid trials are going to be difficult to do. Somehow provision of support needs to continue. So it is not unreasonable to have current healthcare professionals try to adjust to a new way of doing things. But they must not be allowed to hide behind 'treatment tailored to the individual' - which means you can make up whatever you like. Tailoring may well be part of what is needed but it needs to be as a variation of some basic policy that is written down and agreed.
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There is also a clear extension of this very muddled change of position over "inflexible" GET based on deconditioning: it should have them denounce research based on this very premise, namely FITNET, NICE, PACE and, well, all of them, literally the entire body of evidence is on "inflexible" GET since GET is inflexible by definition, built entirely on the premise of deconditioning, explicitly said so in every trial. Which is not the case here. Hence not a real change of position, merely a change of framing of said position, which is the same as no change, a 360 spin at best.

As "positions" go, all I see here is the spinning dancer illusion, where the dancer can spin rightward or leftward depending on how you want to see it spin. Whichever way it is spinning, all the dancer is doing is doing circles.
 
Invisible Woman said:
This means that good, supportive individuals, working hard and making a difference are tarred with the same brush as the likes of Gladwell & co.
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My last addition of contradiction and confusion. Pete Gladwell is the person who I've seen the most at the clinic!

Jonathan Edwards said:
Tailoring may well be part of what is needed but it needs to be as a variation of some basic policy that is written down and agreed.
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Yes, couldn't agree more.
 
ringding said:
My last addition of contradiction and confusion. Pete Gladwell is the person who I've seen the most at the clinic!
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Okay. **picks jaw up off floor**

You've got to wonder what's going on there. i don't doubt your word in the slightest but this man has gone on record endorsing stuff that is just plain wrong and harmful.

Please don't think I am dismissive of your suffering @ringding but you mentioned that you were managing to work a little (though I'm sure that's a struggle and sacrifices have been made elsewhere). I wonder if that's the difference - if you are at the more severe end of things he assumes you should be able to push your way through?
 
Hmm... they make reference to 'physiological dysregulation'. Looking back to the content of the METRIC training for GPs, the content doesn't refer to the 'deconditioning hypothesis' of CFS (and ME,) but rather the 'dysregulation hypothesis'.

So what is BACME's position now on the (still available) GP METRIC training? It seems they are subtly trying to say ME/CFS patients have all the physiological problems of deconditioning and that these can be helped by a gradual (albeit flexible) increase in physical activity, whilst claiming they don't subscribe to the idea that the primary cause (original but not necessarily the maintaining cause) was deconditioning.
 
Invisible Woman said:
Okay. **picks jaw up off floor**

You've got to wonder what's going on there. i don't doubt your word in the slightest but this man has gone on record endorsing stuff that is just plain wrong and harmful.

Please don't think I am dismissive of your suffering @ringding but you mentioned that you were managing to work a little (though I'm sure that's a struggle and sacrifices have been made elsewhere). I wonder if that's the difference - if you are at the more severe end of things he assumes you should be able to push your way through?
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No problem, I don't take that as dismissive. Perhaps you're right, I think it's a good point. Even at my worst I could get to the clinic in person, although it was a maybe effort and I paid for it for a while each time.
As I said previously I know that others have had terrible advice through the Clinics. Maybe that could be additional data to get in future surveys (thinking of the MEAction one from 2019 which I helped with a tiny bit) , their severity I mean, as it could help understand whether it influences the advice received. Tricky as we know grading severity is difficult, but the subjective view of respondents on their severity might still be informative.
 
ringding said:
Maybe that could be additional data to get in future surveys (thinking of the MEAction one from 2019 which I helped with a tiny bit) , their severity I mean, as it could help understand whether it influences the advice received. Tricky as we know grading severity is difficult, but the subjective view of respondents on their severity might still be informative.
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I think that would be well worth capturing.

Also, perhaps, the attitude or approach patients who deteriorated or improved while under the care of the clinic were met with.

It might be if you are severe and don't improve but don't deteriorate they are still supportive but if you were milder and deteriorated while following advice that the gaslighting begins.
 
Jonathan Edwards said:
The problem as I see it is that if BACME members want to convince us that they know what they are doing they need to say exactly what they are doing and on what basis they justify it.
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precisely.
What are they 'treating'?
The fact that they frame it as 'rehabilitation'
rehabilitation
noun: rehabilitation; plural noun: rehabilitations
the action of restoring someone to health or normal life through training and therapy after imprisonment, addiction, or illness.
"she underwent rehabilitation and was walking within three weeks"
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means that they must believe it is reversible.

this is an excerpt from the GETSET manual (which was based on the PACE trial GET manuals, helped by Jessica Bavinton (MBACME)):
The theoretical model within GET booklet

It is not fully understood why GET helps many people with CFS/ME. Several theories have been suggested and it is thought to be due to multiple factors which may vary from person to person.
One theory which can be used to explain GET, as outlined in the GET booklet is based on deconditioning which is the gradual decline in physical fitness and strength in the body as a consequence of a reduction in physical functioning.

Another theory points to an altered perception of effort (this may be more significant than deconditioning). Researchers have noticed that some people with CFS/ME may experience changes in how they interpret the messages that the body gives them during physical activity.

These changes in both conditioning and perception of effort are thought to be reversible. Therefore, by gradually increasing physical activity, this may enable the body to gain fitness and strength as well as making changes to the perception of effort.
Preliminary research suggests that reduced symptoms (including fatigue) are related to simply participating in a GET programme, rather than necessarily getting fitter, whereas improved functioning is related to getting fitter and stronger. Participants are encouraged to see symptoms as temporary and reversible, as a result of their current relative physical inactivity, and not as signs of progressive pathology.
A mild and transient increase in symptoms is explained as a normal response to an increase in physical activity. Apart from the behavioural and perceptual effects of graded exposure to
previously avoided physical activities, there may be other mechanisms involved in the success of GET such as reversing deconditioning, including elements of habituation, and positive effects of re-engagement with important activities. GET has also been shown to improve sleep, cognition, and mood; factors that are also likely to perpetuate the condition..
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https://www.qmul.ac.uk/wolfson/medi.../GETSET-therapists-manual-with-appendices.pdf

so as I previously mentioned although they say they do not believe that the 'deconditioning model' is the cause, the 'rehabilitation/treatment' approach would suggest that they do believe it to perpetuate the condition, otherwise why 'treat' it?

If the service is purely to help and support ME/CFS patients adjust and cope with living with the condition then it should be made much clearer and not involve 'rehab' based on debunked theories and highly flawed research.
 
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Coincidentally, over on the Cochrane thread @Caroline Struthers has just posted about her recent exchange with Cochrane over the CBT review:
In the section "How the intervention might work" it states that: - "For the treatment of CFS, CBT combines a rehabilitative approach of a graded increase in activity with a psychological approach addressing thoughts and beliefs about CFS that may impair recovery. A gradual increase in activity, negotiated and agreed with the patient, can be used as a 'behavioural experiment', in which core beliefs, such as about the link between increased activity and worsened physical symptoms, can be tested"This biopsychosocial approach to the treatment of ME/CFS has been discredited. It is likely it has led to the recommendation of treatments that are at best ineffective and at worst harmful to people with ME/CFS.
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The problem with the clinics, even when they are helpful to people in some ways is that they do not understand or acknowledge what ME actually is. I am sure that there are many people working there who are supportive and do not despise their patients, who are willing to help with employment and benefits but those benefits are incidental.

I am finding it hard to say what I mean. They are all about rehabilitation but they are using the same techniques that are used for people who have a normal exercise system. Like AIDS affects the immune system so you can't boost the immune system to cure it, missing out on that basic fact of ME - that it gets worse with activity - means that any good they do is accidental and they do not know enough to explain to patients the dangers of doing too much.

Since I first joined the ME Association in 1985 it has been known that the most dangerous time for ME patients is when we start to feel better. I am not alone in being wheelchair bound because of thinking I was cured.

To really help people with ME they need an approach that sees us as different from all the other fatiguing diseases and not at all related to deconditioning. We cannot gain aerobic fitness except by unbelievably small steps with a constant danger of making things worse.
 
Trial by Error by David Tuller: The British Association for CFS/ME Switches Gears

It seems likely or at least possible that members of the organization anticipate significant revisions from NICE and want to position themselves for a new environment. If they believed the new guidance would merely replicate the 2007 version and its recommendations for GET and CBT, they would presumably be less eager to repudiate interventions they once endorsed.
 
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The GP METRIC training states the following:
The British Association for CFS/ME (BACME) was formed in October 2009. It aims to encourage health professionals to share and
develop clinical practice in the assessment and treatment of CFS/ME.
BACME also supports professionals from any discipline and across any area of health in the UK in improving care for people with
this debilitating condition.
This organisation also provides excellent evidence based resources to support GPs in the diagnosis and management of CFS/ME.
Please visit the Resources page to access the BACME website.
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It also states the following:
Management Strategies

Successful treatments for CFS/ME aim to break that vicious cycle [the 'dysregulation cycle' is shown in diagrammatic form above this text], increase activity and improve functioning:

 All contain a programme of gradually increasing activity
 All are collaborative, start at a very low, easily manageable, level of activity and proceed gradually
 As patients improve they become more accustomed to (and less fearful of) feelings of effort which accompany exertion
 Patients' activity levels are driven by the programme (and patient choice) not by the symptoms
 All aim to put patients back in control of their symptoms (rather than being controlled by symptoms)

For a video of Prof Alison Wearden discussing the evidence for the management of CFSME, see Resources.
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I'd not read their guide to severe M.E. before, but followed the ME Association's link to it. There is some pretty harmful advice contained in it (I think harmful advice mixed in with some common sense advice is the most dangerous).

https://www.bacme.info/sites/bacme.info/files/BACME Severely Affected Shared Practice FINAL Jan 19.pdf

That was published just last year so I really don't think there is any change in BACME's approach, they are just being more careful with how they are wording it.
 
Statements like this demonstrate that BACME still consider ME/CFS as primarily a reversible condition:

However, if providing aids and adaptations (particularly permanent changes to the home), clinicians should carefully consider the message this might give the patient about their prognosis, and the potentially limiting influence they may have longer-term on recovery. Depending on the circumstances, therapists should encourage the patient to view such aids as potentially temporary to assist them now, and not necessarily permanent. Therapists should also consider whether there is a review process in place to ensure these remain appropriate should the patient’s condition improve.
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 All contain a programme of gradually increasing activity
 All are collaborative, start at a very low, easily manageable, level of activity and proceed gradually
 As patients improve they become more accustomed to (and less fearful of) feelings of effort which accompany exertion
 Patients' activity levels are driven by the programme (and patient choice) not by the symptoms
 All aim to put patients back in control of their symptoms (rather than being controlled by symptoms)

What really annoys me about this laser focus on activity is the knowledge that we actually do have to focus on it. So they've even done us out of an easy-to-share hashtag like #JustStopIt when organisations publish lists like this! :grumpy: Grump, grump.

Still don't understand what's so bloody hard about making tick-lists for avoiding over-activity, though...
 
Simbindi said:
I'd not read their guide to severe M.E. before, but followed the ME Association's link to it. There is some pretty harmful advice contained in it (I think harmful advice mixed in with some common sense advice is the most dangerous).

https://www.bacme.info/sites/bacme.info/files/BACME Severely Affected Shared Practice FINAL Jan 19.pdf

That was published just last year so I really don't think there is any change in BACME's approach, they are just being more careful with how they are wording it.
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see
A Life Hidden - "Beneath the Surface" (Analysis of BACME Guidelines), 2019, Naomi Whittingham
https://www.s4me.info/threads/a-lif...acme-guidelines-2019-naomi-whittingham.11379/
 
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