ME/CFS classed as 'Acquired Neurodivergence' by some DWP Access To Work Coaching Companies

[bobbler]

And unfortunately there's more.
Nancy Doyle (psychologist) Founder/CEO of the DWP coaching company Genius Within and co-author of the British Psychological Society Report 'Psychology at work: Improving wellbeing and productivity in the workplace' .......

Nancy Doyle, appropriates 'Post Exertion Malaise' (Sic) for her theories connecting neurodiversity, Covid, hypermobility, connective tissue and autoimmune conditions, in her Forbes article 2025. This article clearly has a 'we can help them back to work' theme:

https://www.forbes.com/sites/drnancydoyle/2025/07/15/fatigue-brain-fog--and-a-racing-heart---what-doctors-are-learning-about-post-covid-neurodivergence/

Note that this article does not use the name Long Covid, just 'Post Covid' - and does not mention ME/CFS, but Does appropriate 'Post Exertion Malaise' (sic), with a link to the ME Association page on Post Exertional Malaise.


Nancy Doyle conflates PEM with fatigue associated with the conditions listed above, also fatigue associated with neurodiversity. This is damaging to people with ME because it conflates PEM with fatigue in multiple conditions,

She does not appear to have any comprehension that PEM is unique and is Not 'fatigue-with-anything' or 'fatigue-after-exertion'.

Nancy Doyle had to go to the ME Association page on Post Exertional Malaise to find a definition of PEM https://meassociation.org.uk/medical-matters/items/symptoms-post-exertional-malaise-pem/

She also has a touching faith in the Royal Society of Medicine.
.


Forbes article:
.
'Fatigue, Brain Fog And A Racing Heart — What Doctors Are Learning About Post-COVID Neurodivergence'
https://www.forbes.com/.../fatigue-brain-fog--and-a.../

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Quotes -

'A special meeting at the Royal Society of Medicine (RSM) in London has proposed that neurodivergent people, who are more likely to have hypermobility, connective tissue and autoimmune conditions, have been disproportionately impacted by COVID, and that this is having a significant impact on our ability to go to school and work. The rise in neurodivergence since 2020 that is placing so much strain on education and health services, the tax payer and not forgetting the individuals themselves and their families, is indeed partly due to increased awareness and more accessible diagnostic criteria – as has already been argued.

However, this does not explain why these high rates of diagnosis are accompanied by such vastly increased rates of school absence and inability to work. If neurodivergent people have always existed, why are we only now so unwell that we can’t work?'



'There is emerging, but compelling, evidence that the overlap between neurodivergence, hypermobility syndromes, mast cell activation syndrome, postural orthostatic tachycardia and dysautonomia is not a coincidence, and has a lot to do with COVID.'

The impact of these conditions can be severe on their own, though hard to diagnose and lacking in conclusive biomarkers. They lead to chronic fatigue, serious gastro-intestinal distress, brain fog and concentration difficulties, anxiety and depression. People drop out of the labor force, education and careers are curtailed.

'In a country where productivity has dived since the financial crisis, and the health of the nation has not recovered from COVID, The Royal Society of Medicine are trying to understand the root causes, rather than paper over the end results.

Neurodivergent people are at risk of losing their support from welfare payments due to changes to the benefits system, which could underrate the presence of multiple, mid-level symptoms, even though these all add up to a significant drain.

Whilst political circles are arguing over the extent to which the population is malingering versus “genuinely” ill, this group of physicians have come above the squabbling with a potential lever to tip the system from decline to healing. Following their proposed protocols, we can believe people who say that they can’t cope, treat them and support their recovery to living a full life again.

We are at risk of a lost generation of working age people who cannot understand their fatigue, who are trying their hardest but just cannot get moving, the more they try the harder it is (see: post-exertion malaise)'
End Quote.


.
The supposed 'emerging but compelling evidence' research Nancy Doyle links to in the Forbes article is

'Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain'

The study does not include fatigue at all. Fatigue and 'Post Exertion Malaise' is Nancy Doyle's add-on.
One of the study authors is Jessica Eccles, of the Brighton and Sussex Medical School and Medical Advisor to the Sussex ME/CFS Society

https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2021.786916/full?field=

From that it Sounds like someone who due to being from an area of training/expertise that has never had to deal properly with literatures or science thinks that the important part of any academic paper is the easy-read bit on impact that has nothing to do with the research and is just ad-lib suggestings to sell what might be great in the future and suggest it's applicable to the real world, but doesn't test it.

And has no clue it is reading the methodology in detail to see if the results are even worth reading and giving credence to or with x limitations.

And doesn't realise you don't just read a sunnily-worded paper that you like some terms in because they sound-alike to something you'd like to believe so can use them as a marketing strategy claiming that is 'the literature' agreeing with you.

....Except it isn't like she isn't involved in [academic] literature herself, so theoretically should know better? albeit her area seems to be biopsychosocial and coaching and organisational development.

Dr Nancy Doyle - Birkbeck, University of London

www.bbk.ac.uk

But who funding this or allowing people to be sent to it is both capable of doing the above/any different or cares enough to point it out? - and is also in a possible where they would be allowed to, because I bet it isn't that easy if your bosses don't want to hear you

This is where the infrastructure of having a strong charity landscape that isn't half-hearted about what is actually good for patients even if you do get many early days people saying they love these fops and the issue of people claiming recovery from LP and so on being tip-toed around. I'd be intrigued what is happenning regarding the other conditions mentioned like MS too and the responses of big organisations there. ...

I certainly think there is room where I'd say it needs charities to correct this.... Except that in itself seems like a trap insinuating endorsing the premise in itself as if these should exist if a few tweaks are made etc. and even if courses were harmless the topics chosen sound so driven by reversal of understanding of the condition the whole thing is unrectifiable - the issue is that she shouldn't be offering what she is offering. People aren't struggling with 'time management' if they have an energy limiting condition that makes them incredibly ill with PEM - they are struggling with managing an illness where your body becomes unmanageable (not 'poor management of it' which is where these strategies are harmful) and you can't make energy via the magic energy tree etc. So it isn't coaching of the ill people that is needed, but correct information being provided to employers etc.

 

[Jonathan Edwards]

Its sort of biobendybonkersbabble isn't it really?

I wonder what @Joan Crawford thinks about all this. Neurodivergence seems a harmless enough term as long as it doesn't mean much but like all these things it seems to be a way of hiding what you are saying in something that sounds the opposite.

 

[Hoopoe]

When I read this sort of thing, I get the sensation they view patients as group to be exploited. As is usually the case, an ideology is created to make it all seem sensible, compassionate, a wholesome good thing. Probably the people behind this even genuinely made themselves believe they are doing a good thing. Ultimately, the underlying true motives can't be hidden.

The systemic problem is that somehow society thinks it is acceptable for one group to speak on behalf of another. If there was not such a large asymmetry in ability to be heard and to reach people, these things would be much more difficult.

 

[bobbler]

When I read this sort of thing, I get the sensation they view patients as group to be exploited. As is usually the case, an ideology is created to make it all seem sensible, compassionate, a wholesome good thing. Probably the people behind this even genuinely made themselves believe they are doing a good thing. Ultimately, the underlying true motives can't be hidden.

The systemtic problem is that somehow society things it is acceptable for one group to speak on behalf of another. If there was not such a large asymmetry in ability to be heard and to reach people, these things would be much more difficult.

agree completely. And the attitude of 'who cares if it isn't right, they can always 'just say no' and no harm done, and you never know some might like it' prevails all of this harm. I mean literally that is the phrase to not fixing the issue of having anything, or being able to have any sensible conversation where I can talk about me, my life, in as simple terms as being honest about what it took to get there or real about what little I do in a week and be safe.

That is why we need to find a way to talk about this harm and how it suffocates us existing as the human beings that we are and ironically makes us just pawns who are only our label from them. Instead of the often talented and often properly kind and knowing (not lying to ourselves) diligent people who are incredibly ill yet have been unbelievably tenacious surviving despite that and just want space to have people support us in ways we need instead of undermine and silence us.

I do think this type think we aren't that ill so justify the amoral activities by thinking it is just fatigue and all those targeted by the misinformation chain this causes have other support, other options, that it isn't another final nail in the coffin. Not that the type actually ever really thinks about that from coming across too many of them. It is a very weird industry that seems to suck in so many it is hard to believe there are enough who need to be help to excuse that many unhelpful sorts as there are probably more I know offering useless things as their reason for being than people I know who are ill strangely nearly all of whom did and/or still do real straightforward jobs you know like being a teacher, lawyer, marketer, graphic designer.

They rob our voice and existence by BS they spent around 1-2hrs fishing bits off the internet to fill some slides to blag a few hours of a course from. We've all had to deliver a presentation on something where it wasn't high profile and just needed to be ticked off and given no time for and know few will really be interested and so focus on the 'what we know about filling in the form' and 'what does a good session look like' formula of it not being too long and something on each of the slides 'that does'.

And I rather suspect that the yuk issue that those we need to be sorting with eg the real healthcare professionals we actually need has come from them and their reaction to them and what they say about us, and talking as if they are our representatives - just on the basis of my physical reaction to them I really hate the idea those they speak to might think I want them talking about me that way so it really gerrymanders things. Somehow they manage to overexert us whilst making us seem pathetic at the same time rather than the opposite where most of us wonder where the respect is for wading thru screaming symptoms to still be as independent as we can and contribute sense and know exactly how weird certain phrases would sound to a medic (and cringe if someone said it about us) in the wrong way.

I'm really curious who on earth told this person they were OK to speak on behalf of pwme because it is all pretty outrageous given this isn't just a person who went thru some hard time themselves supposedly then making a little course to fulfil themselves, by just a brief look at the link I found to her research she certainly knows better than to misrepresent illnesses and individuals with them. It's quite stunning that you'd decide to do that from such a perspective without thinking abotu contacting one of the existing charities etc for advice to cover your back at least.

Aha... maybe here is the clue

The study does not include fatigue at all. Fatigue and 'Post Exertion Malaise' is Nancy Doyle's add-on.
One of the study authors is Jessica Eccles, of the Brighton and Sussex Medical School and Medical Advisor to the Sussex ME/CFS Society

 

[Trish]

It looks like Dr Nancy Doyle has PhD, I assume in psychology, and is an associate lecturer at Birkbeck College business department. So not someone who should be pontificating on ME/CFS or PEM.

 

[Lou B Lou]

I do think Nancy Doyle is the driving force behind redefining ME/CFS as 'Acquired neurodivergence' in 'back to work' Access To Work DWP coaching, with inappropriate and deeply damaging guidance (damaging for pwME), and what she is doing is Pure Exploitation.
Tagging on ME/CFS onto coaching and educational material designed for neurodivergent people is not in the interests of people with ME. It's just exploiting our disease to expand her reach.

I don't buy her claim to be 'Chief Science Officer' of her company 'Genius Within' either. The study she links to in her Forbes article to support her all-encompassing theories of covid and neurodiversity is really weak.


Nancy Doyle is a Chartered Occupational and Coaching Psychologist, according to this Keynote Speaker company.

This Bio is well worth reading to get the measure of her -

'Dr Nancy Doyle C.Psychol. is the founder and Chief Science Officer [??!] of Genius Within CIC ...... a Forbes columnist and BBC documentary maker ...... '

Nancy Doyle | Keynote Speaker | AAE Speakers Bureau

Book Nancy Doyle Profile - Professor of Organizational Psychology Specializing in Neurodiversity at Work

www.aaespeakers.com

 

[Jonathan Edwards]

If there is involverment of the British Psychological Society could a formal complaint be made?

 

[Lou B Lou]

agree completely. And the attitude of 'who cares if it isn't right, they can always 'just say no' and no harm done, and you never know some might like it' prevails all of this harm. I mean literally that is the phrase to not fixing the issue of having anything, or being able to have any sensible conversation where I can talk about me, my life, in as simple terms as being honest about what it took to get there or real about what little I do in a week and be safe.

That is why we need to find a way to talk about this harm and how it suffocates us existing as the human beings that we are and ironically makes us just pawns who are only our label from them. Instead of the often talented and often properly kind and knowing (not lying to ourselves) diligent people who are incredibly ill yet have been unbelievably tenacious surviving despite that and just want space to have people support us in ways we need instead of undermine and silence us.

I do think this type think we aren't that ill so justify the amoral activities by thinking it is just fatigue and all those targeted by the misinformation chain this causes have other support, other options, that it isn't another final nail in the coffin. Not that the type actually ever really thinks about that from coming across too many of them. It is a very weird industry that seems to suck in so many it is hard to believe there are enough who need to be help to excuse that many unhelpful sorts as there are probably more I know offering useless things as their reason for being than people I know who are ill strangely nearly all of whom did and/or still do real straightforward jobs you know like being a teacher, lawyer, marketer, graphic designer.

They rob our voice and existence by BS they spent around 1-2hrs fishing bits off the internet to fill some slides to blag a few hours of a course from. We've all had to deliver a presentation on something where it wasn't high profile and just needed to be ticked off and given no time for and know few will really be interested and so focus on the 'what we know about filling in the form' and 'what does a good session look like' formula of it not being too long and something on each of the slides 'that does'.

And I rather suspect that the yuk issue that those we need to be sorting with eg the real healthcare professionals we actually need has come from them and their reaction to them and what they say about us, and talking as if they are our representatives - just on the basis of my physical reaction to them I really hate the idea those they speak to might think I want them talking about me that way so it really gerrymanders things. Somehow they manage to overexert us whilst making us seem pathetic at the same time rather than the opposite where most of us wonder where the respect is for wading thru screaming symptoms to still be as independent as we can and contribute sense and know exactly how weird certain phrases would sound to a medic (and cringe if someone said it about us) in the wrong way.

I'm really curious who on earth told this person they were OK to speak on behalf of pwme because it is all pretty outrageous given this isn't just a person who went thru some hard time themselves supposedly then making a little course to fulfil themselves, by just a brief look at the link I found to her research she certainly knows better than to misrepresent illnesses and individuals with them. It's quite stunning that you'd decide to do that from such a perspective without thinking abotu contacting one of the existing charities etc for advice to cover your back at least.

Aha... maybe here is the clue

This. Thanks @bobbler - you nailed it.

 

[Hoopoe]

Attaching these labels and descriptions, who can subtly do harm in a myriad of ways, to a whole group of people without the consent of that group is a form of violence.

Labels and descriptions affect the relationship between patients and the rest of society. I don't want someone else intrude into my life like that.

 

[Kitty]

Neurodivergence seems a harmless enough term as long as it doesn't mean much but like all these things it seems to be a way of hiding what you are saying in something that sounds the opposite.

It has meanings in specific contexts, but I think they're using it here because they want to establish a "truth": that it can be improved with coaching.

Some neurodivergent people find being coached in how to approach situations, or offered strategies that help them manage their time or focus better, is helpful. This provides coaching companies with a nice opportunity to profit from it. (Other neurodivergent people find it stressful, intrusive, and frankly infantilising, but let's park that for now.)

It's inappropriate when cognitive impairment arises from exhaustion, not the neurodivergence of autism and ADD. You can't help people who're exhausted by getting them to do more work. If they already have a job, additional coaching could mean they're being asked to do more work than everyone else. That's how stupid it is.

 

[Joan Crawford]

@Joan Crawford is a member of the British Psychological Society. I wonder whether you can do something about this misinformation, Joan.

I had this section highlighted to me on a forum

"British Psychological Society's 'Psychology at work: Improving wellbeing and productivity in the workplace' Report
Page 52:

'Acquired neurodiversity (neurological conditions)

This type of neurodiversity comprises neurological injuries and chronic neurological conditions. This includes those such as those resulting from trauma or stroke, which affect up to 5 per cent of Multiple sclerosis, which affects up to 0.2 per cent of people, Parkinson’s disease, which affects up to 0.05 per cent of working population and Chronic Fatigue Syndrome, affecting up to 4 per cent of the general population. This list is not exhaustive. Any change to our brain can result in change to our cognitive ability."

Initially it looked to me like a typo in this 2017 BPS document. Confusing neurodiversity with neuropsychological (cognitive dysfunction) that pwME, MS, Parkinsons etc are often affected by.

There is some overlap in symptoms between neurodiverse condition like autism and ADHD, but acquired neurodiversity makes no sense. By their definitions neurodiverse conditions are neurodevelopmental, not acquired later in life like ME or MS.

The advertising and selling of 'coaching' interventions with the goal of return to work is likely problematic for neurodiverse people (some will welcome this as helpful, others will likely feel patronised.....).

It's problematic for multiple reasons for pwME that don't need repeating.

I and others have forwarded on to BPS the article and other feedback.

 

[Hoopoe]

These frameworks are also problematic because they replace listening and making an effort to understand the other person with reducing the person to a stereotype.

They're teaching society to make shallow, dumb judgements.

 

[Lou B Lou]

I had this section highlighted to me on a forum

"British Psychological Society's 'Psychology at work: Improving wellbeing and productivity in the workplace' Report
Page 52:

'Acquired neurodiversity (neurological conditions)

This type of neurodiversity comprises neurological injuries and chronic neurological conditions. This includes those such as those resulting from trauma or stroke, which affect up to 5 per cent of Multiple sclerosis, which affects up to 0.2 per cent of people, Parkinson’s disease, which affects up to 0.05 per cent of working population and Chronic Fatigue Syndrome, affecting up to 4 per cent of the general population. This list is not exhaustive. Any change to our brain can result in change to our cognitive ability."

Initially it looked to me like a typo in this 2017 BPS document. Confusing neurodiversity with neuropsychological (cognitive dysfunction) that pwME, MS, Parkinsons etc are often affected by.

There is some overlap in symptoms between neurodiverse condition like autism and ADHD, but acquired neurodiversity makes no sense. By their definitions neurodiverse conditions are neurodevelopmental, not acquired later in life like ME or MS.

The advertising and selling of 'coaching' interventions with the goal of return to work is likely problematic for neurodiverse people (some will welcome this as helpful, others will likely feel patronised.....).

It's problematic for multiple reasons for pwME that don't need repeating.

I and others have forwarded on to BPS the article and other feedback.

Thank you @Joan Crawford

 

[Sean]

Attaching these labels and descriptions, who can subtly do harm in a myriad of ways, to a whole group of people without the consent of that group is a form of violence.

They think they own us and our story, and that we have no right to object.

Indeed, they think us even trying to tell our own story and criticise their hijacking of it is some kind of major psychological and moral pathology that justifies even more intrusion and hijacking by them.