UK BACME ME/CFS Guide to Therapy 2025

[bicentennial]

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.

3. No thankyou

4. In my view BACME just talked themselves out of a job.

This is my observation. Its not a theory, its not an opinon. It does remain to be seen. I have good reason, sound mind, and I am not a lobster.

 

[Utsikt]

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:


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:


Significant proportions of participants deteriorated physically while on the therapies:

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.

Thank you, that’s a much better example than PACE.

@Trish was this trial ever brought up in your conversations with Gladwell?

Is there any way to make BACME aware that their pacing up has been tested and not only failed, but also caused substantial harm?

That might be a more persuasive argument to them than «you’re making things up».

 

[MrMagoo]

I think part of human rights is not to be tortured, maybe we can top trump their “right to rehab” with that, seeping as they are championing something proven to cause harm…

 

[Amw66]

I fear for those without advocates and where power asymmetry manifests most strongly.

 

[Trish]

Just to let people know that there is some discussion among forum staff/committee about what action we might take. Some document drafting in very early stages. We'll let you know when we are clearer about what we might do.

 

[MrMagoo]

Just to let people know that there is some discussion among forum staff/committee about what action we might take. Some document drafting in very early stages. We'll let you know when we are clearer about what we might do.

Thanks Trish.
This really is dire.

 

[Eleanor]

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.

Always this tap-dance around 'flexibility' and 'as needed' (as decided by whom?) and 'likely to be successful but...', and putting the responsibility on the patient to know whether they're doing too much or not enough, but at the same time telling them they're not actually competent to decide for themselves so they need 'support to increase confidence' etc. All to disguise the fact that none of this is based on anything solid.

I knew it reminded me of something when I first read it, and it's this 'Activity pacing strategy' from 1988 https://www.s4me.info/threads/care-...wnload-action-for-me.39801/page-7#post-550101

 

[rvallee]

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.

Actually after writing this my brain flagged that it remembers a few such trials for LC. I'm pretty sure somewhere close to a handful, but they are small enough to ignore, whereas PACE was big enough to pretend that it showed something it did not.

 

[Eleanor]

On rereading it, this line sums up the core issue for me:

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?

They're seeing the problem as 'patient does a bit more, feels tired/sore, gets anxious/discouraged, just needs a morale boost to carry on.' Rather than 'patient cleans the kitchen counters, then can't have a shower for the rest of the week because they can't stand up for more than a minute,' or 'patient has a remote GP appointment, then can't talk to their family for the rest of the day because the noise of voices is too painful.'

If BACME were able to make the experiment of reconceptualising 'experience of symptoms' as 'decrease in function', some of them might have a lightbulb moment.

 

[rvallee]

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.

I can't help but notice that most of this language is built on FOMO, fear of missing out. It strongly reminds me of gambling marketing when they talk about continuing with the CBT because the possible gains are worth it and if you don't pursue you will have wasted all the effort/money you put in the slot machine before.

Most of the language is just mirage-peddling: you could recover, don't you want to recover? you could be missing out on the best opportunity to recover, all you need is to submit and comply and your wildest dreams will come true because only you stand in the way of achieving them. It borrows from MLM and financial scams more than any other source. For sure this has zero to do with health care, health or anything like it.

 

[rvallee]

I think part of human rights is not to be tortured, maybe we can top trump their “right to rehab” with that, seeping as they are championing something proven to cause harm…

Technically, though not actually, competent health care based on scientific evidence is a human right, and is the law in many countries. And yet here we are. This is an argument they can 'win' on a technicality, being the only ones in the race by disqualifying competitors, but it's not because they're right. In fact they are completely wrong about it, but it's not as if right matters more than wrong here.

 

[Utsikt]

Technically, though not actually, competent health care based on scientific evidence is a human right, and is the law in many countries. And yet here we are. This is an argument they can 'win' on a technicality, being the only ones in the race by disqualifying competitors, but it's not because they're right. In fact they are completely wrong about it, but it's not as if right matters more than wrong here.

The human rights argument might be worth including in any letters. There is no obligation to accept experimental treatments, on the contrary there is a right to be able to refuse them.

Here’s the intro in an overview by WHO, my bolding:

Health and human rights​

The right to the highest attainable standard of physical and mental health is enshrined in several international legal instruments including the International Covenant on Economic, Social and Cultural Rights. It includes freedoms and entitlements. Freedoms include the right to control one’s health and body (for example, sexual and reproductive rights) and to be free from interference (for example, free from torture and non-consensual medical treatment and experimentation, particularly relevant for persons with disabilities). Entitlements include the right to access quality health services without any discrimination.

A human rights-based approach to healthcommits countries to develop rights-compliant, effective, gender transformative, integrated, accountable health systems and implement other public health measures that improve the underlying determinants of health, like access to water and sanitation.

This means countries must ensure legislation and health policies and programmes respect and advance the realization of human rights. Research shows that proactive measures to comply with human rights obligations help countries improve substantive equality and build resilience to shocks. For example, applying a human rights framework to reproductive health can help us identify how preventable maternal mortality and morbidity results from a variety of human rights violations including discrimination and lack of access to quality health services.

Human rights

WHO fact sheet on health and human rights with key facts, introduction, disadvantaged populations and the right to health, violations of human rights and WHO response.

www.who.int

We are being forced to endure their «treatments» because they want to protect their jobs, reputations and egos. It’s abuse, plain and simple.