One of the biggest UK myalgic encephalomyelitis (ME/CFS) charities Action for ME (AFME) has been promoting a document pushing misinformation based on a notorious harmful psychologising model for treating people living with the devastating disease.
However, it’s unsurprising when you learn where – and more specifically, who – the document came from.
Action for ME
On 13 August, AFME posted a link to download a so-called ‘Care and Support Plan template’ for people living with ME/CFS.
In a news post on its website, it originally stated that:
People living with ME/CFS have worked with Dr Pete Gladwell, Clinical Specialist Physiotherapist and North Bristol NHS Trust’s Bristol M.E. Service Lead to develop a Care and Support Plan template with input from Action for M.E.
However, it quickly came under fire from people in the ME community – and for good reason. This is because it was riddled with false and misleading information on the chronic illness.
So, members of an ME forum took action. They wrote an open letter to AFME. In this, they highlighted a number of issues with the document. You can read the full open letter here.
For one, they noted how the 24-page document wasn’t even what AFME claimed it to be. That is, it wasn’t actually a care plan in any real sense of the term. Crucially, they highlighted how contrary to advice from the official 2021 guidelines from the National Institute of Health and Care Excellence (NICE), the supposed care plan doesn’t involve input from clinicians at all.
In other words, the lengthy document pushes the onus on the patient to detail their care needs. But this wasn’t the only – nor worst place – where the document flouted the NICE guidelines. In some parts, S4ME argued the purported care plan would actively harm people living with ME.
Misunderstanding and misinformation
Most prominently, the document displayed a shocking misunderstanding of the hallmark feature of ME/CFS.
Post-exertional malaise (PEM) entails a disproportionate worsening of other symptoms after even minimal physical, social, or mental activities.
But crucially, this is from cumulative exertion, and is a delayed response. As S4ME pointed out, it’s not simply the immediate onset of symptoms after exertion. Instead, it’s the result of people with ME going over their limit, as S4ME explained in their letter:
The effects of a single activity and/or the cumulative effects of multiple exertions over hours, a day or longer may take the pwME over their limit, and result in PEM.
PEM has specific features including a delay of 12 hours or more, typically a duration of longer than a day, sometimes much longer, a significant increase in the pwME’s regular symptoms with additional symptoms, and a significant reduction in the capacity to function. PEM is not a few hours of fatigue, as this document suggests.
Given its conflation of PEM with fatigue, it’s perhaps not surprising that the document makes another appalling error.
The so-called care plan stated that:
Baselines change over time and for some people – but not everyone – they can be slowly increased by consistently undertaking an activity. Baselines will also need to be adjusted during a setback in the M.E.
This is veritable nonsense on a number of levels – and as S4ME noted here again, contradicts the NICE guidelines. Ostensibly, the forum members argued that this amounted to the Graded Exercise Therapy (GET)-lite approach of “pacing up”.
This was where the role of a certain physiotherapist and board member of an infamous organisation fomenting the psychologisation of ME came into sharp relief.
The BACME board member and physiotherapist behind it
‘Bristol M.E. Service’ lead Peter Gladwell compiled the AFME-supported care and support plan. He’s also a board member of the British Association of Clinicians in ME/CFS (BACME).
The Canary has previously pointed out how the organisation has:
a contentious history in upholding a harmful status quo.
Notably, we highlighted that:
the organisation was the machination of notorious members of a lobby of medical professionals hell-bent on psychologising the chronic systemic disease. Members of the ME community sometimes refer to them as the “biopsychosocial” or “psych” lobby.
Specifically, at its outset, professor Esther Crawley chaired the group. Crawley has a prolific record of endorsing treatments geared towards a psychosomatic basis for the disease. These include graded exercise therapy (GET) and cognitive behaviour therapy (CBT).
In 2021, NICE updated its guidelines to downgrade CBT, and remove GET as a treatment altogether. And while Gladwell himself has publicly distanced himself from GET, his record suggests he practices otherwise.
His new care plan’s ostensible “pacing up” focus is a case and point. Significantly, the document references AFME’s controversial pacing guide for this. Who wrote it? None other than Gladwell himself.
The Canary has also previously unpacked some of the enormous issues around this guide. In particular, it details gradually increasing activity “following the establishment of a sustainable baseline”. Moreover, it gives an example of this, stating:
If you decide to extend an activity, do this by up to 10% and no more. For example, if you can currently manage walking for 10 minutes, try increasing it to 11 minutes
Yet this distinctly flies in the face of the new NICE guidelines. We wrote that:
Firstly, these advise that people living with ME should reduce their physical activity “to be below their baseline level”. Vitally, it briefs that they should only attempt increases that stay within their “energy limits”. By contrast, ‘pacing up’ suggests a GET-lite increase of 10% straight off the bat.
What’s more, if that wasn’t problematic enough, the document doubles down on defending this approach. We explained how:
the document goes to great length to demonstrate how ‘pacing up’ isn’t GET. Ultimately however, it splits hairs over the underpinning theory. As such, it fails to acknowledge that it too involves increasing activity beyond a patient’s energy envelope.
In a condition where post exertional malaise (PEM) – a disproportionate worsening of other symptoms after even minimal physical, social, or mental activities is the hallmark symptom, this is clearly a prospectively highly harmful approach.
Gladwell’s GET-lite ‘pacing up’ approach
When all is said and done, the key issue here is that Gladwell’s GET-lite “pacing up” approach is actively harmful to people with ME/CFS.
In fact, the impact is plain to see. Crucially, we detailed how Gladwell has likely put this strategy into practice at his Bristol service. We wrote that:
Patients of the clinic responded to a 2019 survey that #MEAction conducted on the state of ME services across the UK. The Bristol-based service garnered the largest number of respondents, with 76 of its patients taking part in the survey.
Two results stood out. Just 13 – 17% – of Bristol service users said that attending the clinic had helped them. Meanwhile, 27 – 35% – said they saw no change to their condition. The larger remaining 34 participants – nearly 45% – stated that their experience at the service had in fact made them worse.
Alongside this, a separate question identified the type of treatment the service prescribed patients. On this, the largest proportion of respondents – 28, or nearly 37% – said that the clinic encouraged them to:
first find a sustainable level of daily activities, and then to increase my activities week by week
Naturally, this chimes with Gladwell’s “pacing up” approach.
Of course, this is also salient given how Gladwell used input from patients at the service to develop the care plan. As S4ME noted, these are likely to be newly diagnosed people living with mild ME. Crucially, it expressed how:
People who are neither experienced in managing an illness nor educated about the nature of evidence may be especially vulnerable to misinformation and manipulation. They need charities like AfME to advise and advocate for them, not to collude with Peter Gladwell in misusing their goodwill to perpetuate his own ideas about ME/CFS.
Not the first time, likely not the last
Ultimately, the whole saga shows how out-of-touch AFME STILL is with the chronic illness and people living with it. Action for ME CEO Sonya Chowdhury responded to the open letter. She apologised for the document, and announced the charity would remove it from AFME’s website.
She also detailed that AFME is in the process of reviewing its resources to ensure they comply with the 2021 NICE guideline. In other words, the charity is aware some of its guides perpetuate the abuse of ME/CFS patients. Nearly three years on, it hasn’t removed these – including Gladwell’s pacing guide. Worse still, it’s publishing more by him, knowing full well the harm his approach has had on people living with ME.
And while the forum welcomed Chowdhury’s apology and decision, the ME community shouldn’t have had to fight a charity claiming to represent them in the first place.
Crucially, this is hardly an isolated incident where AFME and the major UK ME charities are concerned in general. One person on X compared AFME’s swift response to the ME Association digging its heels over concerns S4ME raised on a project the charity is funding:
Thank you for such a thoughtful response & for taking the complaint seriously, unlike @MEAssociation & the number of serious concerns raised about their PROMS project.
— JellyBabyKid (@JBKid7) September 3, 2024
Unsurprisingly, Gladwell is co-leading this. As the Canary highlighted at the time, the ME Association broadly dismissed these concerns. What’s more, it doubled down in backing one of the researchers after she unleashed a torrent of gaslighting and abuse at S4ME members raising valid criticisms of the project.
Action for ME: still in bed with BACME
As such, Action for ME’s response hardly signals an end to this debacle either. AFME might have removed the care plan, but this underpinning pacing ‘guide’ from Gladwell is still floating around on its website.
Most notably, Chowdhury and AFME stopped short of cutting ties with Gladwell. In its letter, S4ME argued that AFME’s relationship with the BACME board member and Bristol clinic lead invariably led to this whole issue. They stated that:
ME organisations should be campaigning for a new model of NICE-compliant clinics, which are led by a doctor, are supported by specialist nurses, and cater for all severity levels including the most severe. While clinics continue to be led by therapists steeped in old, ineffective, potentially harmful models of care who have little or no real understanding of ME/CFS, we will continue to be subject to inappropriate resources such as this.
And this perfectly underscores the problem. AFME remains wedded to just such clinicians espousing the same old biopsychosocial ideas wrapped up in shiny new terms to give the surface-level appearance of NICE guidelines compliance. In reality, these ideas – as S4ME demonstrated – are palpably not.
After AFME published its response, one forum member aptly summed this up:
What we now need to hear is that AFME full stop finish ‘their reliance’ on Peter Gladwell, the North Bristol Clinic, and most definitely BACME. Those orgs/individuals must in future be nowhere near ME guidelines, projects etc. The idea of slowly slowly educating BACME is just fantasy – we don’t have any more time for that.
That the UK’s largest ME/CFS charities maintain a relationship with BACME and its clinical members is an absolute scandal. That it takes money from people with ME while doing this, is a disgusting affront to all those living with the devastating disease.
However it’s hardly surprising after over a decade of the charity’s gaslighting and abuse of people living with ME, and its long history of complicity in cosying up with the psychiatric lobby.
The S4ME letter signed off stating:
AFME can and should do better.
Given all that, this is generous to say the least.
Featured image via the Canary
