Supporting people with myalgic encephalomyelitis in primary care, 2025, Chowdhury

[Dolphin]

https://www.magonlinelibrary.com/doi/abs/10.12968/pnur.2025.0098

Comment
29 December 2025

Supporting people with myalgic encephalomyelitis in primary care​

Author: Sonya Chowdhury sonya.chowdhury@actionforme.org.ukAuthors Info & Affiliations
Publication: Practice Nursing
Volume 37, Number 1
https://doi.org/10.12968/pnur.2025.0098

Abstract​

Sonya Chowdhury of the UK charity Action for ME highlights the crucial role that practice nurses can play in supporting individuals with this complex and often overlooked condition.

References​

Action for ME. What is ME? 2025a. https://www.actionforme.org.uk/supporting-you/what-is-me/ (accessed 10 December 2025)
Google Scholar
Action for ME. Patchy, misunderstood and overlooked. Implementation of the NICE guideline [NG206] on myalgic encephalomyelitis/chronic fatigue syndrome in England. 2025b. https://www.actionforme.org.uk/wp-content/uploads/2025/04/Action-for-ME-FOI-report.pdf (accessed 10 December 2025)
Google Scholar
Davis HE, McCorkell L, Vogel JM, Topol EJ. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol. Nat Rev Microbiol. 2023;21(3):133–146.
Crossref
Google Scholar
Department of Health and Social Care, Department for Work and Pensions, Department for Education. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): the final delivery plan. 2025. https://www.gov.uk/government/publi...atigue-syndrome-mecfs-the-final-delivery-plan (accessed 10 December 2025)
Google Scholar
ME Research UK. Severe ME – what do we know? 2014. https://www.meresearch.org.uk/severe-me-the-facts/ (accessed 10 December 2025)
Google Scholar
National Institute of Health and Care Excellence. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. NG206. 2021. https://www.nice.org.uk/guidance/ng206 (accessed 10 December 2025)
Google Scholar
NHS. Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). 2024. https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/ (accessed 10 December 2025)
Google Scholar
University of Edinburgh. DecodeME: the world's largest ME/CFS study. 2025. https://institute-genetics-cancer.ed.ac.uk/decodeme (accessed 10 December 2025)
Google Scholar

 

[Jonathan Edwards]

The piece doesn't seem to say much specific but is reasonably sensible.

 

[hotblack]

Would be nice if more of us could read it but if it’s reasonably sensible and is in the right place to get to the people who need to hear it then I guess that’s a good thing.

 

[Nightsong]

It's a short article, only 2 pages long. While it's not at all heavy on specifics it's actually pretty good.

PEM is described accurately as the hallmark symptom & the delayed effect is mentioned. Symptoms are described accurately; as are the DecodeME results. I see nothing misrepresented or over-egged as is often the case with charity materials. A few quotes:

Spoiler: Quotes

The hallmark symptom of ME is post-exertional malaise, where simple physical or mental activities, or combinations of activities, can leave the person feeling debilitated. The impact of post-exertional malaise is not always felt straight away, and symptoms do not significantly improve with rest. For the most severely affected, even the touch of a loved one can severely exacerbate symptoms.

While seemingly simple acts, listening and validating are powerful in themselves; Action for ME speaks to many patients who have been dismissed and discredited by healthcare professionals, which only adds to their distress.

By combining everyday clinical support with a stronger collective voice for research and systemic change, primary care professionals can help to find answers on ME, after decades of this condition being neglected. For the 1.35 million people in the UK living with ME symptoms, and those with long Covid facing similar challenges, this is not just about care, but about hope.

My only minor disagreements would be with the prevalence estimate, and with this:

However, a freedom of information request by Action for ME (2025b) found that implementation of the NICE guideline remains uneven across the UK, resulting in a 'postcode lottery' where access to appropriate care depends largely on where a patient lives.

As we have been discussing recently I do not think there really is any appropriate care in the UK save for the occasional sympathetic GP (or, very rarely, in secondary care). I also wouldn't tie appropriate care to NICE congruence in this way.

I also hadn't heard that DHSC plans a public awareness campaign:

There are some encouraging commitments, such as two new NHS England e-learning modules focusing on primary care and severe ME, and plans for a public awareness campaign led by the Department of Health and Social Care.

Practice nurses can certainly help pwME in some circumstances. I think this is a useful contribution.

 

[Hutan]

It's very good to hear that this is sensible. Based on the quotes provided by Nightsong though, this document could have been refined with the input of patients.


For example, here's some thoughts about that paragraph about PEM:

The hallmark symptom of ME is post-exertional malaise, where simple physical or mental activities, or combinations of activities, can leave the person feeling debilitated. The impact of post-exertional malaise is not always felt straight away, and symptoms do not significantly improve with rest. For the most severely affected, even the touch of a loved one can severely exacerbate symptoms.

It would be better to refer to cognitive activities than mental activities (but it's good that emotional activity was not listed separately)

The impact of post-exertional malaise is always felt straight away - if you have it, you know, right now. I think the suggestion that the impact of post-exertional malaise is not always felt straight away was an attempt to talk about the delayed impact of activity. Therefore, it is the impact of the physical and cognitive activity that is not always felt straight away, not the impact of PEM.

And actually, the symptoms of PEM do significantly improve with rest. Rest is the only thing we really know that helps PEM to end and reduces symptom load. If we say 'symptoms do not significantly improve with rest' then there is no point getting the person with ME/CFS some help with housework or making it possible for them to reduce work hours, for example, because they could carry on with the same level of exertion that they managed before becoming ill.

I think it's a shame to use the illness name 'ME'. I thought we were moving to a consensus of using ME/CFS? ME as an abbreviation makes the community a sitting duck for accusations that this illness is a result of rumination about oneself and one's symptoms - 'it's all about me'. ME does not sound like an illness, it sounds like a pronoun.

While seemingly simple acts, listening and validating are powerful in themselves; Action for ME speaks to many patients who have been dismissed and discredited by healthcare professionals, which only adds to their distress.

I also hate seeing 'distress' used in this context. I've seen clinicians with BPS views say things like 'I'm sorry that you were distressed'. The word puts the responsibility for us feeling concerned on us, the inference is that I could have chosen not to be distressed. Distress is just a short stop from hysteria, it's the domain of damsels sitting in towers waiting ineffectually for someone to rescue them.

By saying that the healthcare professionals are only adding to our distress, it implies that we are currently distressed. And sure, sometimes I guess we are. But, we are not always emotionally beleaguered, we also have self-efficacy.

It would be much more powerful to focus on the action of the healthcare professional in that paragraph, to say that the dismissal and discrediting of the healthcare professionals is harmful. These are things that the healthcare professionals can stop doing, must stop doing. It is not about our emotional reaction to what they are doing, which might be portrayed as out of proportion, it is that what they are doing is fundamentally wrong and unprofessional.



I think it is okay to offer suggestions for improvement to our advocates. These are mine, adding to the points that Nightsong made, based on the quotes I have seen. I think we can acknowledge the effort and commitment, and the successes of our advocates, while still working towards making advocacy better.

 

[forestglip]

ME as an abbreviation makes the community a sitting duck for accusations that this illness is a result of rumination about oneself and one's symptoms - 'it's all about me'. ME does not sound like an illness, it sounds like a pronoun.

Does this actually happen? The name ME has been around for decades, and I don't see people doing this play on words. People don't pronounce it "me", do they?

 

[Utsikt]

And actually, the symptoms of PEM do significantly improve with rest. Rest is the only thing we really know that helps PEM to end and reduces symptom load. If we say 'symptoms do not significantly improve with rest' then there is no point getting the person with ME/CFS some help with housework or making it possible for them to reduce work hours, for example, because they could carry on with the same level of exertion that they managed before becoming ill.

I think what is meant is that the trajectory of the symptoms is a lot slower than what you’d expect if the issue was just that you’d done too much and got tired/other symptoms.

If they also say that you need to rest during PEM, a reader should be able to understand that you essentially just have to suffer and wait it out.

 

[Hutan]

Does this actually happen? The name ME has been around for decades, and I don't see people doing this play on words. People don't pronounce it "me", do they?

Fair point, I couldn't find any examples in a quick search. The illness is certainly characterised by some as the result of self-obsession, of paying too much attention to oneself, so having an illness name of ME seems like a very bad idea when it comes to branding. I would feel embarrassed to say and especially to write that I have ME. Also 'my daughter is suffering from ME' ... It's a phrasing ripe for parody on reddit.

But, regardless, I thought there was a consensus to use ME/CFS? Has AfME committed to keep using ME?

I think what is meant is that the trajectory of the symptoms is a lot slower than what you’d expect if the issue was just that you’d done too much and got tired/other symptoms.

I understand what was meant, but it isn't what was said. i.e 'the impact of post-exertional malaise is not always felt straight away'. If you have malaise, there is an impact now. You don't have PEM and not feel an impact. Sonya meant that the impact of activity is not always felt straight away and/or post-exertional malaise is not always felt straight away. The current phrasing further muddles a concept that is already a bit difficult.

If they also say that you need to rest during PEM, a reader should be able to understand that you essentially just have to suffer and wait it out.

I don't know if they say that. I'm just seeing that phrase 'symptoms do not significantly improve with rest', and thinking that a doctor who doesn't know much about ME/CFS might assume from that that they should advise people to push through their symptoms, because a leading patient charity said that rest doesn't help.

It would be great if AfME could make the article publicly available.

 

[Utsikt]

I don't know if they say that. I'm just seeing that phrase 'symptoms do not significantly improve with rest', and thinking that a doctor who doesn't know much about ME/CFS might assume from that that they should advise people to push through their symptoms, because a leading patient charity said that rest doesn't help.

I see what you mean now.

Our factsheet contrasts PEM to things that do improve with rest, but it also very clearly says that you still have to rest during PEM.