UK BACME ME/CFS Guide to Therapy 2025

[MrMagoo]

page 4


A lot of self justifying buzz words.


More buzz words builiding the picture of the expert therapist forming a 'therapeutic relationship' with the pwME, individualised, so basically giving therapists permission to make it up as they go along, so long as it's vaguely like the BACME model and they can get the pwME on side.


A dishonest use of the WHO statement which does not say rehab is appropriate for all patients, only that it should be available when appropriate. BACME have no evidence rehab is appropriate for ME/CFS. Yet they suggest therapists use it as part of justifying their approach.

Conversely - can we have evidence of the denial of the “human right to rehabilitation” which has sparked this unusual centre -ing of it?

It’s just that, none of the patient communities I know have complained that rehabilitation has been withheld from them. I mean, even your Paul Garners wouldn’t complain it’s been “withheld”.

 

[Ash]

They don't know what's going on biologically and have no business prying into how we choose to manage our lives and relationships. They should provide us with information about what pwME find helpful, and about the risks pwME report from repeatedly pushing and crashing, then butt out unless we ask for help with the practicalities.

Yes.

Thank you for the detailed messages above. I have enjoyed skimming and returning to re read sections. Such informative writing.

Have a good rest I hope you can distract yourself.

 

[Utsikt]

Conversely - can we have evidence of the denial of the “human right to rehabilitation” which has sparked this unusual centre -ing of it?

It’s just that, none of the patient communities I know have complained that rehabilitation has been withheld from them. I mean, even your Paul Garners wouldn’t complain it’s been “withheld”.

The only human right that’s being denied wrt rehab is the right to choose to refuse any medical interventions.

 

[Kitty]

Summary of the phases of therapy:

Engaging:
• Engage the person living with ME/CFS in a therapeutic relationship that facilitates collaborative working towards the person’s goals.
• Develop a full understanding of the patient’s history, symptoms, the impact of ME/CFS on their life, their social and physical environment and any other factors such as neurodiversity, severity of the condition or other needs.
• This holistic assessment should act as a foundation for future work and will support the validation of ME/CFS as a real condition which has an impact on function and wellbeing. The person is supported through the therapist’s expertise and knowledge base, to make changes that fit with their goals.
• Engaging is a foundational but ongoing process as individuals and their contexts change.

Regulating:
• To reduce the variation in symptoms (boom and crash pattern) through stabilising daily routines, baselines for daily activity, including physiological cycles such as sleep, eating and moving.
• This can provide a sense of control and for some the goal may be to achieve regulation and stay at this level.
• For some people this may provide a foundation to help achieve further goals.

Optimising

• To focus on the person’s values and goals.
• This may involve re-prioritising some activities and approaching other activities in different ways.
• Whilst some may achieve increases in frequency, intensity, quality and/or duration of activity, others may find ways of adapting to achieve their goals.
• Optimisation is always developed in partnership with the person living with ME/CFS.

Sustaining:
• To continue a focus on the person’s goals and an improved quality of life, whilst accommodating the demands of daily life over time.

Is any of that actually therapy?

It's a genuine question; I've read the thing through twice and I still don't know what they mean by the word 'therapy'.

 

[Jonathan Edwards]

It's been pointed out that the Newton et al paper quoted at the start of the dysregulation model and several others referenced are based on Fukuda diagnosis. Given the emphasis on sympathetic/parasympathetic, and HPA axis in her team's work,

I think we just looked at a paper where the Newton group looked for evidence for their autonomic theory and admitted there was none.

One thing the comes to me from reading this is that the biology seems to be about ten years out of date, apart from being speculation. The HPA axis thing is plain wrong because cortisol has been shown not to be seriously out of line. The dysregulation model is just something dreamt up by some clinicians to use as a marketing spiel for their programs. A few short sentences is enough to dismiss it completely.

 

[Jonathan Edwards]

Mulling the document over on the plane I was struck by how unjoined up it is.

We get a half page on why building up or pacing up or increasing is not GET. But there is nothing in the document about any recommendation for exercise at all. There is no reerence to incresing or pacing up either. I suspect the document has been written by someone who took on the job of producing a nice glossy new version for Brownie points but who actually has little idea of what it is all about. They got asked to put some bits in like the 'not-GET' table but failed to notice that it was not mentioned elsewhere. The rest of the document is essentially aout optimising coping with activities of daily living, not walking 100 yrds more.

And this leads on to the fact that nothing in the document seems to require a physiotherapist. All the stuff recommended is really OT territory if anything. And yet at the end it says a team could have a physio (and also a psychologist although if it is not a psychological illness they seem unneeded too and there is nothing in the document that requires psychological training).

And then there is this intriguing statement about patients preferring an "interdisciplinary" approach. Note that this is not multidisiciplinary but more the opposite - having only one therapist provide all flavours of therapy to reduce the number of people the patient needs to see. So why have a team at all? They have argued themselves out of a job.

But then they keep referring to skills that individual therapists might have to bring from their special training that are not included in this ME/CFS specific bunch of 'therapies' (which do not seem to include any actual therapy). But if these are important or evidence-based why are they not in the document.

So my overarching analysis is that the document is so disjointed that it neatly destroys any justification for any therapist involvement at all. And although there are hundreds of details one can pick apart the message boils down to this and can be expressed succintly.

 

[Trish]

We get a half page on why building up or pacing up or increasing is not GET. But there is nothing in the document about any recommendation for exercise at all. There is no reerence to incresing or pacing up either. I suspect the document has been written by someone who took on the job of producing a nice glossy new version for Brownie points but who actually has little idea of what it is all about. They got asked to put some bits in like the 'not-GET' table but failed to notice that it was not mentioned elsewhere. The rest of the document is essentially aout optimising coping with activities of daily living, not walking 100 yrds more.

That half page is clearly inserted later so Pete Gladwell can show of his fatuous table about why pacing up isn't GET to get back at those of us who say it's a form of GET.

There is stuff about pacing up in their other documents:

Position paper (1 page) quoting the second half, my bolding. They are clearly recommending pacing-up from a stable baseline and claiming improvement and recovery.

BACME supports grading activity strategies when delivered by an ME/CFS specialist clinician to make increases and improvements in physical, cognitive and emotional function from an identified stable baseline. BACME does not support inflexible Graded Exercise Therapy (GET) built on a primary deconditioning model. A deconditioning based approach would involve an inflexible, structured approach where regular increases in activity are encouraged regardless of how the patient is responding.

BACME supports the use of Cognitive Behavioural Therapy (CBT) strategies and other psychological interventions with the aim of developing management strategies delivered by a specialist ME/CFS clinician who has a good understanding of ME/CFS. BACME does not support the use of inflexible CBT programmes delivered by practitioners who do not have a good understanding of the biological aspects of ME/CFS.

Rehabilitation is to be appropriately tailored to an individual’s needs and personal goals and provided within a holistic model. A flexible framework of monitoring and review is recommended and is best achieved by providing continuity of care

We support the continuing development of specialist multi-disciplinary ME/CFS services and specialist clinicians to guide, support and advise patients towards optimal health, wellbeing, and recovery. This is a complex illness but given prompt specialised intervention we expect improved quality of life, understanding of living with the illness, and progress for each patient.

Dysregulation model page 16 More of the same in slightly different words.

Initially the focus is on consistency and regulating, to support stability before increasing the level of demand. This should be done gradually allowing development of tolerance and adaption prior to any further increases in demand, to enable the body to rebalance.

Therapy programmes should work on different phases of stabilisation and then building tolerance. It is important that any strategies are implemented after a careful assessment of the individual’s condition, and which aspects of dysregulation are most prominent and need to be addressed to support greater stability. Understanding how the body’s physiology can be affected by this illness is ani mportant starting point to any therapy programme.

Guide to Therapy:

This is a bit less blatant, but pacing up still there in the optimising section. It's tied to goal setting and gradual increases in activity towards the goal, and involves detailed clinician involvement and advice, while at the same time using the get out clause that it's all patient directed. It only refers to setbacks, not PEM, and implies these are not a great concern. There's no warning at all about this setting pwME up to push crash cycles, deterioration and feelings of failure.
I find this particularly troubling.

page 20

Section 3: Optimising

This phase focuses on the person’s experience, values and goals. This may involve reprioritising other activities and approaching some activities in different ways. Whilst some may achieve increases in frequency, intensity, quality and/or duration of activity, others may find ways of adapting to achieve their goals.

page 23

Current function: consider physical, cognitive and social function

 Reviewing and refreshing the starting point (baseline). Is this stable?

 Explore their intention and desired destination. Offer support in setting realistic therapy goals in line with values.

 Deal with expectations, standards and priorities if they are likely to lead to overly ambitious efforts which are less likely to succeed.

 Share an analysis considering their social, physical, work, study and home environments. Are there factors which would facilitate or inhibit the goal?

 Review activity analysis as a tool: all components of activity; physical, mental, emotional, cognitive, social.

 If the person has achieved a level of stability, consider with them the pros and cons of a re-introduction of a valued activity. Consider a small, slow exploratory increase in one aspect of physical, cognitive or social activities – reinforcing flexibility as needed and periods of stability between increases (refer to the sections of NICE Guideline(2021) relating to increasing activity: 1.11.2 and 1.11.13).

 Support to increase confidence in setting up experiments that are likely to be successful but with full recognition that it might not be successful at this time.

 Spend time making sense of arising symptoms & experiences. Is any altered experience of symptoms to be expected with a new activity, or is it a warning sign that the experiment is not appropriate at this time?

 Regularly review progress with goals and ensure an increase can be sustained prior to moving forward with additional goals. A period of consolidation at this new level is important before considering a further increase, and this period of consolidation needs to be determined by the individual. It can often be a period of weeks.

Remember to acknowledge and celebrate change and progress with goals (be they consolidating, reducing or increasing), no matter how small.

 Modify goals as required using collaborative problem solving, solution finding where possible.

page 26

Resources and approaches to support the Optimising phase

• Experiential learning in and out of sessions

• Monitoring or recording for experiential learning:

use of

• Problem solving

• Managing obstacles

• Metaphors

• Case studies

• Verbal and written goal sheets can include confidence and importance scales

• SMART goals can be helpful for some people, not for others

• Priorities review

• Setback management

• Reflection on changes and progress towards goals

 

[Jonathan Edwards]

This is a bit less blatant, but pacing up still there in the optimising section. It's tied to goal setting and gradual increases in activity towards the goal, and involves detailed clinician involvement and advice, while at the same time using the get out clause that it's all patient directed.

Less blatant and I would say even buried under a bushel rather deliberately. Goal setting becomes the dog whistle phrase for pacing up.

And of course another thing is that they want to justify goals of therapy so they can do PROMS but in reality these are just goals, to which there is no therapy to contribute.

 

[Trish]

A big part of the problem with this stuff about goals setting and gradual increases is that the therapists are only likely to see the pwME a few times while they go through the first iteration of trying to increase a bit, and may easily get away with it, so assume that, as the clinician has advised, they can keep stepping up activity to 'desensitise'. By the time they hit the wall and crash badly and possibly long term, they have been signed off by the clinic and sent back to their GP who won't have a clue and will probably tell them to keep trying.

 

[Trish]

It also completely disrgards the fact that most, if not all, pwME are desperate to do more, and any encouragement to try, especially with promises of improvement and fairytales about desensitisation, we will inevitably push ourselves. We need advice to hold back, not to do more.

 

[Jonathan Edwards]

That is another thing that is notably absent from the guide - any indication of service format in terms of time frame. I almost got the feeling that the guide was being used as a recipe for private clinics that might supply services either via NHS or independently who would be happy for patients to come back and pay for refresher courses. Within an NHS rehabilitation framework there is no chance that the person with ME/CFS is going to be any different disease-wise over the time of the course so the whole idea of increasing is inappropriate.

I also note that they define these four phases and then immediately say that they aren't really four phases after all but are all muddled together in a Venn diagram.

 

[MinIreland]

The document is intended for use with pwME that is mild or moderate. There is no acknowledgement anywhere I can see of just how sick people are and how impossible it is to set goals, make plans, achieve and stay at baseline, regulate our sleep according to current western norms, eat a perfect diet, manage our lives without crashing, or that anyone can gauge when and how to test ourselves with deliberate increases in activity or stimuli.

PEM is barely mentioned as far as I recall. It's just 'setbacks' that we can be taught how to manage, then back to the sunny uplands of regulated stability and onwards to optimisation.

It feels like a fantasy version of an idealised person's life where they are suffering from a mild case of burnout and are so stupid they need someone to hold their hand through every aspect of their lives while they pursue thier goals for a happy life.

Goopy wellness trainers have arrived.

There is no mention of warning pwME that pushing a bit can lead to long term detrioration, and no safety net of an already established care pathway if we tip into severe or very severe ME/CFS after following their advice.

"The sunny uplands" made me laugh.

I don't have the energy to read everything but my thought for now is: The road to hell is paved with good intentions.

 

[MinIreland]

Is any of that actually therapy?

It's a genuine question; I've read the thing through twice and I still don't know what they mean by the word 'therapy'.

I think you can call it therapy. It has the intent to care for patients. As I said, I don't have the energy to read everything in detail, but I'd like to make a high level comment.

I don't think everything they say is nonsense, but I think there needs to be a clear distinction between:

What can we do to help people cope with their illness, and provide support to make their life as 'livable' as possible despite their symptoms (which is what they could potentially help with) versus:

What can we do to improve these patients' capabilities? And there the answer is: See the previous question and then it might happen if the patient is lucky.

 

[Jonathan Edwards]

It also completely disrgards the fact that most, if not all, pwME are desperate to do more, and any encouragement to try, especially with promises of improvement and fairytales about desensitisation, we will inevitably push ourselves. We need advice to hold back, not to do more.

I looked through the whole thing trying to find soething that a normal sensible person would not have thought of themselves. Nothing.

Maybe as well as reminding themselves not to treat patients like children in a gym class (allowing the need for 'collaboration') and to be 'more compassionate' (presumably normally they aren't) they should remind themselves that pwME/CFS are not poor wee dummies who cannot think for themselves.

 

[bobbler]

I apologise for filling this thread with lots of rather long posts. I'm trying to get my understanding of the details sorted out so I can draft something to form the basis of a possible response.

Turning now to the Therapy guide this thread is about, I'm going to go through it a bit at a time and try to make comments. Responses welcome, or tell me to take this detailed look to a private document of my own rather than overfilling this thread.

First, when and how it was produced:



Comments:

It was produced in 2014, so must have been based on the 2007 guideline that recommended CBT/GET as a treatment approach promising improvement or recovery. It was produced by clinicians working in the ME/CFS services at the time, so thoroughly steeped in the CBT/GET model and approach. I don't have the energy to go back and look at the version produced in 2014 and to detail the differences to now.

They judged that only minor adjustments were needed to adapt it to appear to fit the 2021 NICE guideline. In other words, the same bunch of therapists had already probably recognised that pwME with PEM can't sustain fixed incremental increases in physical activity, and that the 2007 guideline and PACE did not in fact recommend fixed increments, since they both used heart rate monitors to stop people overexerting in their exercise task. So they weren't using fixed increments anyway.

It was therefore easy for them to claim that their activity increases still in the guide are NICE compliant because they are not fixed increments.

They also get around NICE's saying not to use the deconditioning or fear avoidance model by simply creating a different model to justify their approach, ignoring the fact that it's equally unevidenced, and even if it were true it doesn't show how behavioural changes can lead to the improvements they claim. It does not, therefore, form the basis for any treatment program.

The approach is essentially the same as before, with the same series of steps and the same advice about behaviour changes, so it's not surprising they only needed to make small adjustments and are still able to produce a therapy program requiring significant input from therapists over a series of sessions, thus keeping their jobs and justfying them on the grounds that they are doing evidenced based treatment leading to improvement. Not true.

What should have happened once NICE had recognised that the old model and treatments were wrong and should not be used, is that the therapists should have recognised that there is no clinical trial evidence for any therapy program or treatment, and there is not settled science explaining ME/CFS.

And therefore what pwME need is a completely different medical model of care, support and harm reduction. It was time for them to scrap their treatment programs and to step aside and the funding to be used to train and employ specialist doctors and nurses for a completely new treatment model. It was time for the physios, OT's, psych therapists to stop trying to be the main/only clinicians to treat the illness and get back in their boxes to only be used when their specialist input is needed, such as for aids and adaptations, preventing contractures, counselling.

I can see it's hard for a group of professionals who have dedicated their service to pwME and thought their treatment programs were effective to cling on to this belief, and look for ways to adjust to the new guideline. They were enabled in this by having some reps on the guideline committee who presumably insisted on inclusion of some unevidenced sections on CBT and exercise programs. But if you read NICE carefully, it doesn't say pwME can achieve improvement by gradual exposure desensitisation, nor does it say there is a scientific model to follow, nor does it allow exercise programs or activity increase programs that push people beyond their current PEM threshold to try to increase activity capacity.

Of course there is the other thing.

The BACME 'therapy' was produced in 2014.

The research they've cherry-picked one-liners out of context from that they claim is the 'culmination of the science' used to justify this over the fact that they are doing the same thing again to what has been proven to not be effective and has surveys potentially does harm ... is one paper from a somewhat obscure background (ie not the culmination of 'the science' or even a flagship theory of any specific researcher or even a big study or based on the right cohort) that was released 5yrs after they'd decided on the therapy in 2019.

SO it wasn't 'based on this'. Because they wrote the therapy first. They went fishing for quotes for 5yrs until something swam past as they realised they needed to switch up the storytelling whilst not changing the 'what we supply'.

And they aren't quoting the therapy of this in their paper but their own anyway. And if there was a therapy in that paper then it must have been in the impact/suggestions part because the paper/research didn't test any therapy, so even if all was wonderful with the method and sample size and criteria it would only be looking at levels of things in people ill, not if they transformed after 2yrs because they stood on their head daily.

And both were well before the Nice guideline process began and analysed quality of research etc.

 

[rvallee]

If it helps I used to have a few years of guidance from one of the Yorkshire fatigue clinic OTs that this document was reproduced with permissions from. I was diagnosed by them initially and was taught about the so called dysregulation model. It was described as fact yet with the caveat that we don’t understand everything. So it was confusing for me with my healthcare background largely focused on proven disease mechanisms.

One time I dealt with a psychiatrist who only had SSRIs to give out as the fix for fatigue, he explained it on the basis of the 'chemical imbalance' model. You know, the one that lots of MDs these days want to pretend did not actually happen as it happened and for sure was never asserted to be factual. Since nothing ever happens from it, it just keeps going. Impunity is like rot, it eats away at the foundations of any system.

So this is not new or unique, medicine has a long history of giving out fake explanations for things, and then cowardly walking back the fact that it was widespread. There is no war in Ba-Sing-Se, obviously.

 

[Kitty]

It has the intent to care for patients.

Sure, but intentions are irrelevant. What happens is what counts.

And what happens is that they manifestly fail to understand the disease they're supposedly experts in—because they refuse to listen to the actual experts (patients)—and therefore give inappropriate advice. I'd call that organised misconduct, not therapy.

 

[rvallee]

Conversely - can we have evidence of the denial of the “human right to rehabilitation” which has sparked this unusual centre -ing of it?

I frankly mostly interpret it that they mean they have the right to impose rehabilitation on us, and to insist that since they know it works, that we must comply or just be losers, or whatever. I don't think it makes a difference.

It's obviously not a credible argument and they did not put any actual thoughts into it.

It’s just that, none of the patient communities I know have complained that rehabilitation has been withheld from them. I mean, even your Paul Garners wouldn’t complain it’s been “withheld”.

And yeah actually the decades-long lies about this have always been that those treatment do exist, are available, though they always more, but that we are too stupid to use them. And of course it's true that those treatments have never been available at a scale that makes any sense, the economics of it are disastrous, so there isn't much supply, but there is also no real need or demand because this has nothing to do with the problems we experience.

 

[rvallee]

Is any of that actually therapy?

It's a genuine question; I've read the thing through twice and I still don't know what they mean by the word 'therapy'.

It would be more accurate to call this motivational coaching. And really it involves no skills beyond what your average life coach can do. Therapy is another one of those words that have lost all meaning because of garbage like this.

 

[Utsikt]

A big part of the problem with this stuff about goals setting and gradual increases is that the therapists are only likely to see the pwME a few times while they go through the first iteration of trying to increase a bit, and may easily get away with it, so assume that, as the clinician has advised, they can keep stepping up activity to 'desensitise'. By the time they hit the wall and crash badly and possibly long term, they have been signed off by the clinic and sent back to their GP who won't have a clue and will probably tell them to keep trying.

This. Exactly what happened to me four times in a row with different physios thinking they were helping me exercise my way back to better health.

It didn’t help that none of them knew about PEM so I just thought the massive crashes every few months were bad cases of the flu (tested negative for covid).

I looked through the whole thing trying to find soething that a normal sensible person would not have thought of themselves. Nothing.

Maybe as well as reminding themselves not to treat patients like children in a gym class (allowing the need for 'collaboration') and to be 'more compassionate' (presumably normally they aren't) they should remind themselves that pwME/CFS are not poor wee dummies who cannot think for themselves.

It’s exactly like that in practice. I’ve yet to hear a single original thought from any of the people that say they want to help me. I usually have to do their job for them and make suggestions myself, while also trying to fend off their attempts at making me do more.

At this rate, I’m going to end up with some real trauma, regardless of the long term health outcome. This approach is not harmless even if it didn’t cause PEM.