Bristol Chronic Fatigue Syndrome/ME Service; Bristol M.E. Service - Peter Gladwell

Jonathan Edwards said:
And when the context of the question is no longer loaded with conflict of interest.
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Indeed. If you are filling in a 'survey' but it is also actually acting as a report as to whether your health is getting better or worse and will be going back to your GP or importantly to employers, then it isn't actually just what it purports to be. It is someone in an impossible situation with all sorts of pressures coming from all sorts of angles.

In fact even an online survey if someone is identifiable still has problems, it is just there might be a few more whose balance of coercive situation/delusion because they believed 'they'll be one of the ones who recover... any day now, if they keep going' might include just a few more people who it has now backfired on and left them even worse long-term and have stopped being silenced by it, because they realise the silence to protect themselves didn't help them either. But not all.

These people know they are still stuck with this illness long-term and the dystopia of the system they have to act carefully with to keep themselves safe from (forget the term 'care') for their entire lives. The impact part of the risk= likelihood vs impact has been made so huge and so unfixable because notes aren't removed and go all over the place we all live under what can only be accurately described as a tyranny. Until feedback is only counted if it is being administered in a way that keeps those replying definitely safe from this, we always have to assume any results are only measuring the impact of those pressures.

First there is still that ongoing, well-acknowledged by everyone, truth that you don't upset your HCP and then end up with a dodgy letter that affects future medical care or ends up with inaccurate labels of non-compliance being suggested. When that HCP is convinced the treatment 'always works as long as the patient was behaving and doing it right and isn't lying' then that person knows that reporting the treatment as 'not worked' is actually stating or suggesting to someone with power that they secretly did something wrong.

then, regarding employment, it needs to be read alongside proper independently done deep research from someone talking to those who are looking back and describing the situational factors. It must be retrospective because of the gaslighting at the time and the so extreme it is hard to describe anywhere near the level for someone to imagine utter washing-machine of constant admin that if you get wrong has life-changing impacts.

It is about time it is done. And I'm not sure it is medicine/allied that need to be doing it, but maybe from a more legally type subject area. SO it takes the discussion away from the 'did they didn't they have something making them that ill' or nonsense from sensitive people working in that area 'claiming outrage because they didn't put someone in that situation [on their own]', into just describing the only choice list of no-win options and how bad all of them are. And the pressures and misinformation that combine into this.
 
I don't know if this needs its own thread, but this chapter, from the book 'The Palgrave Handbook of Third-Wave Psychotherapies', is written by Fiona McKechnie, who is affiliated with Bristol ME/CFS Service, according to the journal.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID: Mindfulness-Based Self-Management

Fiona McKechnie

Abstract
Conditions such as long COVID and Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome (ME/CFS) are characterised by disabling levels of fatigue. Although these conditions affect millions of people worldwide, there is limited understanding of what causes them, and therefore, medical treatments are limited to symptom management.

This chapter will 1) outline ME/CFS and long COVID symptoms and the consequences of these conditions for the people affected by them and 2) describe an adapted mindfulness-based programme for people self-managing ME/CFS and long COVID which is based in best mindfulness practice and current UK models of care for these conditions.

Web | The Palgrave Handbook of Third-Wave Psychotherapies | Paywall
 
From Bluesky by @Lucibee:

Lucibee @lucibee.bsky.social

NICE guidance NG206 is actually quite explicit.

It says:

"DO NOT offer people with ME/CFS ... any therapy based on physical activity or exercise as a cure for ME/CFS;
... or that uses fixed incremental [small, ie 10%] increases in physical activity or exercise, eg, graded exercise therapy"

‍♀️

Lizzy @hopefullizzy.bsky.social
As part of my letter to the Bristol ME service, plus George Monbiot discussing ME again i decided to look up the service more… and found this…
This is GET.
www.nbt.nhs.uk/our-services...
bafkreict57nlnjkns36dz42rk2znfyxrckcjmcnqmtehmc4x4dfu5s7d2m
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However, the NICE Guideline Committee completely botched this section of NG206, by specifying that "fixed" referred to the amount of time rather that the amount of activity increase.

Box 4 Graded exercise therapy definition.Graded exercise therapy is a term used in varying ways by different services supporting people with ME/CFS.In this guideline, graded exercise therapy is defined as first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active. This definition of graded exercise therapy reflects the descriptions given in the evidence that was reviewed, and it is this approach that the guideline says should not be undertaken.An individualised approach that should be taken for people with ME/CFS who choose to undertake a physical activity or exercise programme is described in recommendations 1.11.10 to 1.11.13.



The way it is phrased makes it seem that exercise is sometimes OK, as long as it is overseen by "a physiotherapist
who has training and expertise in ME/CFS".

It makes no mention of PEM at all.

Rather than adding clarity, I think it makes things much worse.

Incorporating physical activity and exercise.Recommendations 1.11.9 to 1.11.16Why the committee made the recommendations.The committee agreed that clarity of information and clear guidance on energy management in relation to all activity should be available to people with ME/CFS. The committee also agreed that people need clear information about services available to them, and particularly the specific circumstances in which a personalised physical activity or exercise programme could be considered by a person with ME/CFS.In the committee's experience, people with ME/CFS have had varying results from physical activity and exercise programmes. The committee agreed it was important to discuss this with people with ME/CFS and to explain to them the possible risks and benefits.Because of the harms reported by people with ME/CFS in the qualitative evidence, as well as the committee's experience of the effects when people exceed their energy limits, the committee recommended that people with ME/CFS should not undertake a physical activity or exercise programme unless it is overseen by a physiotherapist who has training and expertise in ME/CFS.

The committee outlined what a personalised physical activity or exercise programme should, and should not, include. In developing recommendations on the content, approach and delivery of physical activity and exercise programmes, the committee considered the benefits and harms associated with graded exercise therapy that had been reported with ME/CFS across the quantitative and qualitative evidence, alongside their own experiences. They recognised that different definitions of the term 'graded exercise therapy' are used, and as a result the content and application of graded exercise therapy programmes differ. This has resulted in confusion. Taking into account descriptions of graded exercise therapy in the evidence they reviewed, the committee included a definition in this guideline to clarify what graded exercise therapy is intended to mean in the recommendation.The committee concluded any programme using fixed incremental increases in physical activity or exercise (for example, graded exercise therapy), or physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories, should not be offered to people with ME/CFS. The committee also wanted to reinforce that there is no therapy based on physical activity or exercise that is effective as a cure for ME/CFS.For people with ME/CFS who do choose to take part in a physical activity or exercise programme, this should follow the principles set out in this section and the energy management section.

How the recommendations might affect practice.These recommendations should prevent inappropriate or unstructured physical activity or exercise programmes from worsening people's symptoms. The referral to a physiotherapist or occupational therapist in an ME/CFS specialist team may need increased resources. However, this should not impose a significant cost on the NHS and if it leads to fewer people with deteriorating symptoms, it will be highly cost effective.



It gives room for GET to be interpreted in whatever way a clinic wants to interpret it in order to get around the guidance and to carry on doing exactly what they were doing before.

As long as they don't call it GET, or interpret "fixed incremental increases" in the narrow way implied.



This extract (from www.nature.com/articles/s41...) shows how confused things are.

GET was always supposed to be individualised and supervised.

"Fixed" in an individual context means "negotiated and a target set for the next X weeks".

Extract from Federowski et al, showing how easy it is to misinterpret NICE guidance on GET.



This area is hugely complex, and is fraught with misdirection and misunderstanding.

GET has always been simultaneously "standardised" and "individualised", depending on how the original inventors (White et al.) wanted to convey it and use it.

Extract highlighed text: Although a graded approach can have many meanings, we see that some authors use the term 'graded exercise therapy' to advocate a more standardized and less individualized approach to physiotherapy.



This gives those who wish to distort the argument, ample room to shift their meaning whenever it suits them.

Even in the #PACEtrial itself this is clear.

GET is defined as "negotiated, incremental increases" in exercise duration.



But... the #PACEtrial manuals make it clear that it is not the increases ("fixed" or otherwise) that are important but that:

"A central concept of GET is to MAINTAIN exercise as much as possible during a CFS/ME setback."

This is what is so damaging.



Prof White et al. have made much of the use of the term "fixed" in NG206.

But all it means is "negotiated" or agreed in advance, by their own definition.

It's a target for that individual. It does not necessarily imply standardisation.



But then they run into difficulties with trial methodology.

How do you make sure that everyone receives the same treatment if an intervention is individualised?

Well, that's an issue. And we don't know, because we can't see how much GET each ppt received.

(Sorry to mention #PACEtrial again)



For me, this was always the biggest flaw of PACE.

We just don't know how much each ppt was able to do.
They might have stuck to the "spirit" without following through.
And we'll probably never know.



Although NG206 has a lot to say about exercise, it is a shame it doesn't explain that the only reason it is included is because of previous (ill-conceived) ways of treating the disease.

It's more there to curb the enthusiasm of therapists, rather than as a recommendation.

Screenshot of NG206 - Incorporating physical activity and exercise



But because it's there, it's taken as a recommendation.




In looking to see whether I'd posted anything about this before on here, I discover that I've posted this thread before!

bsky.app/profile/luci...

Lucibee@lucibee.bsky.social
10/ A major flaw of the #PACEtrial was that they didn't actually measure how much participants increased their activity in the GET group.

I looked at that in a blog I wrote a few years ago:

Whatever happened to actigraphy.

lucibee.wordpress.com/2018/05/09/p...
Link preview

PACE trial: Whatever happened to actigraphy?​

In my first blog about the PACE trial, I discussed the lack of objective measures, and the bothersome issue of not knowing how much participants actually managed to increase their activity, because…
https://lucibee.wordpress.com/2018/05/09/pace-trial-whatever-happened-to-actigraphy/
lucibee.wordpress.com/2018/05/09/pace-trial-whatever-happened-to-actigraphy/
https://lucibee.wordpress.com/2018/05/09/pace-trial-whatever-happened-to-actigraphy/
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Link to Bristol ME Service - ME/CFS Rehabilitation Checklist

"What is rehabilitation?
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.”
Access to rehabilitation is a human right.

The Bristol M.E. Service aims to support people living with M.E./CFS in developing optimal self-management and rehabilitation. However, surveys carried out by patient charities have found that some rehabilitation approaches have been problematic for some people living with M.E./CFS. We wanted to learn more about this, so that these problems could be avoided. We therefore worked with the national charity Action for ME on their detailed survey of patient experiences of rehabilitation which was carried out in 2010. A detailed analysis of the responses to the ‘free text’ sections of the survey was carried out which encouraged respondents to write about their experiences of these therapies. We published the findings from this research in a peer-reviewed journal [1] as we think that it is important to share knowledge about what works well, and what the problems can be, especially as these problems can be avoided.

We found that key issues for a number of survey participants included:

  • difficulties setting a sustainable baseline for exercise or activity (see below)
  • the importance of good quality therapist-patient communication and collaboration.
Based on our clinical experience and the feedback analysed in Action for M.E.’s patient survey, we devised the following checklist to help people living with M.E./CFS to ensure that they receive the best advice and support from their rehabilitation therapist."



It is completely clear that the NHS Bristol ME is continuing to push GET. Even worse, through sleight of hand, they are appearing to put AfME's stamp of approval on it.

Surely AfME is aware of this? I think AfME should be taking vigorous steps to get its name removed from the Bristol website. And both AfME and MEA should be campaigning to have the offerings of the Bristol ME/CFS clinic made safe. Given what we have seen about Gladwell's inability to take on board feedback about this, I think that means the removal of Gladwell from his role.

This clinic will be harming people. If stopping that is not a role for the two main patient charities, then I don't know what is.

It would also be interesting to alert the NHS and see what their response is. If the NICE Guideline does not stop this
For M.E./CFS rehabilitation, small increases, for example 10% from the baseline are commonly used. This is typically followed by a period of days or weeks before the next increase is considered.
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6. Do you understand that you may experience a mild, acceptable increase in symptoms following your increase in exercise?
This increase in symptoms is common, but should settle after a week or two at your slightly higher level of activity. This increase in symptoms should feel acceptable to you. It is important to realise that rehabilitation is not aimed at relieving symptoms in the short term: it is aimed at making gentle progress with function.
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then the NICE guideline needs to be re-written.

9. Do you understand that not everyone makes progress with rehabilitation?
Research suggests that people who plan to slowly increase their activities are more likely to make moderate improvements. However, we know that a significant proportion of people with M.E./CFS who try to slowly build up their activity don't manage to make significant progress. If you are one of these people, try not to be disheartened: at least you know that you have tried to gradually build up your activities, and you have done the best you can to make progress at this stage. Your therapist should understand that not everyone makes progress with rehabilitation.
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But that is very wishy-washy, especially when coupled with the above advice on the need to push through symptoms. There is no guidance on when enough trying to build up activity in a concerted way is enough. That section on not making progress will leave people feeling that they have failed, that perhaps they have not done their best to improve and that they should try again. Certainly, it will leave family members wondering if the person with ME/CFS really tried hard enough to get better.

The Bristol checklist clearly suggests, despite no evidence to support it, that increasing activity is what leads to improvements in capacity.

I hope that anyone who believes that they have been harmed by the Bristol Clinic gets in touch with AfME.
 
Jonathan Edwards said:
I like the way they point to their peer reviewed publication with a number (1) but give no reference list to say what that number refers to.
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It's hidden under
10. Are you seeing a therapist who has had success with rehabilitation for people with CFS/ME?

References:​
  1. Gladwell, P.W. et al. Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME. Disability and Rehabilitation, 2014. 36(5): p. 387-394.
We have been discussing this same site already in 2020.
Back then, there was a second reference to a White paper:
Sly Saint said:
White, P.D. et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet, 2011. 377: p. 823-36.
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From Bluesky by @Lucibee :


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If folks need an impression of how dismal things are wrt treatment of ME and LC in the NHS, you just need to look at the services stocktake that was done in January 2025.​
​
There was "no data" for ME/CFS clinic referrals.​
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Annex 1 - Data Dashboard - Long Covid ME/CFS Stock take December 2024. Highlighted box shows that there is NO DATA for total referrals to ME/CFS clinics for the period examined in the stocktake.
The ME Association have managed to acquire (via FOIA request) the report of the NHS stocktake of ME/CFS and Long Covid services that was completed at the end of January 2025.​
​
As expected, it is utterly inadequate.​
​

Link preview​

https://meassociation.org.uk/2025/0...-and-long-covid-specialist-referral-services/
​

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Basically, the ME/CFS clinics that do exist are a law unto themselves.​
There is no accountability.​
No checks to make sure they are sticking to the guidelines (which are the bare minimum anyway).​
​
That's how clinics like North Bristol still get away with offering GET under the auspices of "rehab":​
​

M.E./CFS Rehabilitation Checklist | North Bristol NHS Trust​


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​

 
The referrals for LC are just as appalling, given how the government's response about what they're doing about it is always those, when they don't even seem to amount to 0.001% of the estimated number of sufferers. I've rarely seen systems display such callous disregard for anything under their purview. This isn't even one bag of stale hot-dog buns for 1000 people, handed once, in an ongoing famine.
 
Am currently on a break from the forum but came across this today. Have searched the forum and can't find any reference to it, although it may well be common knowledge on social media.

Dr Peter Gladwell passed away on 15 June 2026 as announced on 21 Sept by

ppa.csp.org.uk

Dr Pete Gladwell

It is with a heavy heart that we share the news that our former member and friend, Dr Pete Gladwell has passed away peacefully at his home in Bristol on 15 June 2026 at the age of 62.
ppa.csp.org.uk ppa.csp.org.uk
 
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