UK BACME ME/CFS Guide to Therapy 2025

[Mij]

Overview of the therapy

As the remit of the guide is active therapy the rationale for the rehabilitation approach is included. The World Health Organisation has defined rehabilitation as:

"A process aimed at enabling people to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels. Rehabilitation provides people with the tools they need to attain independence and self-determination.”

The World Health Organisation considers that access to rehabilitation is a human right. The WHO “optimising” approach to rehabilitation can form part of the dialogue with the person with ME/CFS when forging a therapeutic alliance.

"Based on values and goals".

 

[rvallee]

They seem to have missed the fact that pacing up has no evidence base in trials whatever.
The basing in lived experience is pure manipulation.

Also for all its fault, and it has many, the pacing in PACE was about pacing up gradually, not the actual meaning that we patients understand and apply, and the entire message out of PACE was that it was inferior to GET. Which it wasn't anyway.

But this is evidence-based medicine, where no one has ever let a total lack of evidence get in their way.

 

[Jonathan Edwards]

2) gradual symptom-contingent pacing up was tested in PACE and failed.

I had forgotten that. So we had a trial and pacing-up was even less use than GET (if anything).

 

[Utsikt]

I had forgotten that. So we had a trial and pacing-up was even less use than GET (if anything).

I’m going off of what I remember from other people’s comments, but I’m fairly certain it was not fixed increments. I don’t know where to find the protocol to check.

 

[rvallee]

If you manage to do make sense of your body, and it isn’t «doing more will make it better», you’re told that you haven’t actually made sense of your body. Experience is only valid if it corroborates that physician’s beliefs..

Tails they win. Heads we lose. Always and forever.

Fraud is the word for this. All of this is fraudulent.

 

[hotblack]

We shouldn't underestimate the skill needed to produce a document that's complete bollocks from start to finish.

Thanks for that much needed laugh at this

I make the cost somewhere around £10-20M p.a. I think it could be quite a lot more than that but let's be conservative. Over 3-5 years that is £30-100M. Sequence ME is likely to need about £20M over that time period. Which is better value?

The point on cost and returns is definitely one that needs to be made to those commissioning services.

And perhaps that it looks like people are trying to game the system with their own measurements of success as we’ve seen done before.

 

[Kitty]

The point on cost and returns is definitely one that needs to be made to those commissioning services.

Also that BACME are self-appointed experts who present unevidenced theories as if they were based in science. They've only succeeded in occupying that space because of the nature-abhors-a-vacuum rule.

Anyone can claim to be a barber, but if BACME took it up with an equivalent level of expertise they'd be bankrupt inside three months.

 

[MrMagoo]

Also that BACME are self-appointed experts who present unevidenced theories as if they were based in science. They've only succeeded in occupying that space because of the nature-abhors-a-vacuum rule.

Anyone can claim to be a barber, but if BACME took it up with an equivalent level of expertise they'd be bankrupt inside three months.

Can we report the clinicians to their professional bodies?
BACME need taking out.
I hope AfME are on our side, even quietly.

 

[Utsikt]

I had forgotten that. So we had a trial and pacing-up was even less use than GET (if anything).

I have found the protocol for GET in PACE. The therapists were told to persuade the patients to maintain as much of the planned exercise as possible during setbacks. (p51)

Page 20 about GET:

A baseline of physical activity is agreed and commenced, at a manageable low level of intensity. The duration of the physical activity/exercise is then increased slowly and carefully, at the right time for each participant. Once managing 30 minutes of low intensity activity/exercise, e.g. walking, they will be assisted in gradually increasing the intensity of their activity/exercise, by keeping a careful record of their activity/exercise and monitoring their heart rate. It is their planned physical activity, and not their symptoms, that determine what they are asked to do, although activity is mutually reviewed on a regular basis and plans may be adjusted depending on general health and symptoms.

But it’s inconsistent. It seems to me like they defined GET as making a long term plan that you execute regardless of symptoms, but also that adjust depending on symptoms.

https://huisartsvink.wordpress.com/wp-content/uploads/2025/01/pace-get-therapist-manual.pdf

CBT is not much better, really. You’re still encouraged to ignore symptoms because they will go away once the body gets used to things.

Page 17:

Increasing or changing your activities
When you have established a routine including planned activity and rest, you will take steps to work towards your targets for treatment, (end of treatment targets). This will involve you gradually increasing some activities e.g. exercise, introducing new activities eg doing a course, and in some cases reducing activities e.g. long working hours.

Page 19:

Persevere with your programme however difficult it may seem, and in time you will appreciate the benefits of gradually changing the way you do things.

Most people experience one or two minor set-backs (increased symptoms) during treatment for one reason or another. It is important to maintain the programme as far as possible at these times. Although set-backs can be irritating, they can be a good opportunity to learn more about your CFS/ME. They also give you the opportunity of becoming an expert in managing “difficult” times.

Their bolding:

Remember- the benefits of continuing with cognitive behaviour therapy makes overcoming the difficulties worthwhile

The entire manual incredibly toxic. I know we’re nowhere done with this garbage, but I’m becoming more and more grateful that I did not become sick twenty years earlier..

In short, CBT is more upfront about how you might get symptoms from doing the planned activity, but they should be ignored because they are temporary and you will adjust. They also emphasise that you should avoid doing too too much to not get into crashes. So the recommended increases have to be in between somewhere.

https://www.qmul.ac.uk/wiph/media/the-wolfson-institute-of-population-health-wiph/documents/4.cbt-participant-manual.pdf

BACME says this (p23):

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.

So the pacing up part seems to be less rigid, but it’s also always searching for a way to do more. There is technically a recognition that it might not always work, but there is also an explicit assumption that there exists increases that are likely be successfully sustained.

They reference their dysregulation model, which says that increasing from a stable baseline will build tolerance. It’s unclear why the tolerance will be built. Other than a reference to homeostais.



Page 16:

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 an important starting point to any therapy programme.

https://bacme.info/wp-content/uploads/2022/05/BACME-An-Introduction-to-Dysregulation-in-MECFS-1.pdf

I actually think BACME v2025 in some aspcet is worse than both GET and CBT, because at least they had an explanation (however flawed) for why doing more would result in you eventually being able to do even more.

BACME v2025 has just done away with the explanation entirely and are more explicit about not using fixed increments.

«We don’t know why, but the solution is still to do more. Trust me, it will work this time.»

 

[MinIreland]

We shouldn't underestimate the skill needed to produce a document that's complete bollocks from start to finish. I bet none of us could do it.

You can see it in any corporate consultancy report all the time. You're right. It's a skill. It's also a skill that people then start to have conversations about the bollocks and all pretend they know what they're talking about.

 

[Kitty]

Can we report the clinicians to their professional bodies?

They'd probably fully support them.

For me, the outrage is not so much that a gap in provision has been filled by hopelessly inadequate people, it's that the gap exists in the first place.

I have asthma, which has never shown signs of escalating into anything more than an inconvenience, yet my GP is happy to treat and manage it. So why is it okay for people with a serious disabling illness to be treated by a bunch of people whose own publications trumpet their ignorance? Who're not even qualified doctors?

 

[Utsikt]

Here’s an explanation for why BACME might think that their approach produces improvements:

Imagine a person that semi-frequently experiences PEM for whatever reason.

On a scale from 1-10, they can do 4 when pacing consistently, but they often end up doing 5, and them have to rest at 2 for a while. They don’t quite know 4 is their limit, because it’s been a lot of PEM lately. Maybe they are aiming too high. Maybe life happens. Maybe pacing is hard. They then go back to doing 5, get PEM and need to rest at 2 again.

This person will be told to stabilise. That might mean to do 3 every day to be on the safe side.

Because 3 doesn’t result in PEM, they try to do a bit more.

Now they do 3.5 every day. It’s still fine. So they try at bit more.

Now they do 4 every day, and it’s fine.

And look at that! The BACME approach has produced an improvement of a whole point from where they started!
Of course it has not caused an improvement. This is just pacing done well.

Now imagine that this person has a natural fluctuation with some improvement at this point.

Because 4 was fine, they do 4.5. That’s also fine.

They try to do 5. That is also fine.

Hooray! The BACME approach has produced an improvement of yet another point!

But now they reach a plateau that they can’t get past. Instead of making the best out of their life, they are encouraged to keep trying to do small experiments to do more. It doesn’t work. Are they doing something wrong? Maybe if they rest even better. Or worry less. Or follow an even stricter sleep protocol. Because the BACME approach worked, so they have to keep trying it. This is just a temporary setback in their recovery journey. Trust the process.

 

[Suffolkres]

An assessment toolkit is currently beingdeveloped by Professor Sarah Tyson in association with BACME and the M.E.Association and should be available in 2025.

So it is particularly important that the MEA give an account of their stance on this. If they have bought in to this document, people with ME/CFS should be warned off any further involvement with MEA.

Increasingly it seems Paid employees in MEA have too much sway, influence and control.
I regret this will damage MEA.

 

[Trish]

I think one key reason why BACME therapists are convinced they are right is they only see most of their patients for a limited number of vists, say six, either weekly or fortnightly, before handing them back to the GP. In those few weeks or months, by the time the pwME has been diagnosed, filled in lots of questionnaires, been talked at about dysregulation models and baselines and made to keep activity diaries and discuss them, they have probably only reached the beginning of pacing up, starting, as @Utsikt describes, quite slowly and from below their current threshold for triggering PEM.

So the pwME tell the therapist they feel less ill and more in control. And if it's in a group, they get praised and anyone feeling worse keeps quiet and doesn't dare admit they have failed and got worse, or drops out because they are too sick or have realised pacing up is harming them.

Then they are signed off and sent off to manage on their own with a care plan based on what they have been told to do with setting goals and gradually desensitising themselves to stimuli and exertion. By the time they end up crashing badly, it's too late, the clinic have signed them off and reported to their GP that their illness is stabilised, and if they follow the therapists advice they will be on the road to recovery.

My local clinic even advertises itself as focused on recovery. I just hope people in this situation are able to work out for themselves that pacing up is not right for them and have the support to be able to manage their lives to minimise PEM. There are probably a lot of people stuck thinking it's their fault the treatment didn't work and made them sicker.

 

[MrMagoo]

I think one key reason why BACME therapists are convinced they are right is they only see most of their patients for a limited number of vists, say six, either weekly or fortnightly, before handing them back to the GP. In those few weeks or months, by the time the pwME has been diagnosed, filled in lots of questionnaires, been talked at about dysregulation models and baselines and made to keep activity diaries and discuss them, they have probably only reached the beginning of pacing up, starting, as @Utsikt describes, quite slowly and from below their current threshold for triggering PEM.

So the pwME tell the therapist they feel less ill and more in control. And if it's in a group, they get praised and anyone feeling worse keeps quiet and doesn't dare admit they have failed and got worse, or drops out because they are too sick or have realised pacing up is harming them.

Then they are signed off and sent off to manage on their own with a care plan based on what they have been told to do with setting goals and gradually desensitising themselves to stimuli and exertion. By the time they end up crashing badly, it's too late, the clinic have signed them off and reported to their GP that their illness is stabilised, and if they follow the therapists advice they will be on the road to recovery.

My local clinic even advertises itself as focused on recovery. I just hope people in this situation are able to work out for themselves that pacing up is not right for them and have the support to be able to manage their lives to minimise PEM. There are probably a lot of people stuck thinking it's their fault the treatment didn't work and made them sicker.

We could question their theory from the other angle?

What is the “ceiling” of improvement and how do you know when you are there?
C’mon Petey G, let us know! You’re the expert, right? You’ve been practice this for goodness knows how many years. What is the average maximum? Recovered to as before illness?

 

[Sean]

Yes, important point. Once you drop those fundamental tenets (deconditioning and fear avoidance), the whole house of cards collapses.

You would think so, in theory. But apparently not in practice.

 

[Amw66]

Increasingly it seems Paid employees in MEA have too much sway, influence and control.
I regret this will damage MEA.

Sadly it will damage far more people than the MEA

 

[Hutan]

As others have pointed out, I think the two most potent arguments are that 1) there is no robust evidence in favour of this approach, and that 2) gradual symptom-contingent pacing up was tested in PACE and failed.

There is also the point that symptom-contingent pacing up has been tried in many studies, not just PACE. And, not only is there no credible evidence of benefits, there is evidence of harm. For example, the Magenta trial, published in 2025:

GET was delivered by specialist therapists as a personalised approach, initially establishing a baseline level of physical activity (walking, sport, etc.) estimated as the median amount of daily physical activity over a week. Children were asked to avoid peaks in exercise, to be able to do the same every day. Participants were offered a detailed assessment of their physical activity at baseline. Once that baseline was established, participants were asked to slowly increase (by 10–20% a week) their physical activity when they felt able to. Participants were asked to monitor exercise and were taught how to stay within 50–70% of their maximum heart rate [13, 14]. If symptoms increased, participants were advised to stabilise or reduce their physical activity.

Activity management (AM) was provided as a personalised approach that established a baseline (similar every day) level of cognitive (e.g. schoolwork, social activities) and physical activity (walking, any exercise) using diaries. This usually required a reduction in activity on some days. Both physical activity and cognitive activity were then gradually increased as participants were able. If participants’ symptoms increased, they were advised to keep activity constant or reduce activity (cognitive and physical). Sessions were delivered by health professionals including specialist doctors, psychologists, physiotherapists, occupational therapists and nurses.

You can see there that GET was defined effectively in the same way as BACME pacing up - establish the baseline, then slowly increase in a symptom contingent manner. Activity management was the same except it took into account cognitive activity as well as physical activity. It is nonsense for BACME to suggest that 'pacing-up' is some new clever patient-centred thing that leaves all the problems of GET behind.

Here's the conclusion for Magenta:

Conclusion: There was no evidence that GET was more effective or cost-effective than AM in this setting, with very limited improvement in either study group evident by the 6-month or 12-month assessment points.

Significant proportions of participants deteriorated physically while on the therapies:

There was weak evidence of a greater risk of deterioration with GET (27%) than with AM (17%; p = 0.069).

Importantly, there was evidence of damage done to the mental health of participants, with one participant hospitalised with suicidal ideation, with the paper acknowledging that this was possibly attributable to GET. There was that Swiss survey that found people with ME/CFS reported harm to mental health as a result of these therapies.

 

[Sean]

I think one key reason why BACME therapists are convinced they are right is they only see most of their patients for a limited number of vists, say six, either weekly or fortnightly, before handing them back to the GP. In those few weeks or months, by the time the pwME has been diagnosed, filled in lots of questionnaires, been talked at about dysregulation models and baselines and made to keep activity diaries and discuss them, they have probably only reached the beginning of pacing up, starting, as @Utsikt describes, quite slowly and from below their current threshold for triggering PEM.

So the pwME tell the therapist they feel less ill and more in control. And if it's in a group, they get praised and anyone feeling worse keeps quiet and doesn't dare admit they have failed and got worse, or drops out because they are too sick or have realised pacing up is harming them.

Then they are signed off and sent off to manage on their own with a care plan based on what they have been told to do with setting goals and gradually desensitising themselves to stimuli and exertion. By the time they end up crashing badly, it's too late, the clinic have signed them off and reported to their GP that their illness is stabilised, and if they follow the therapists advice they will be on the road to recovery.

My local clinic even advertises itself as focused on recovery. I just hope people in this situation are able to work out for themselves that pacing up is not right for them and have the support to be able to manage their lives to minimise PEM. There are probably a lot of people stuck thinking it's their fault the treatment didn't work and made them sicker.

Yep, that is basically what is happening. All superficial short-term feel-good and serious pressure to not report any bad stuff. Then the pros walk away before the reality hits and they have to confront it.

 

[InitialConditions]

This has excellent anti-BPS sh*tposting potential, were we ever to go down that route.