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Response to The Guardian article on ME/CFS guidance — A call to refocus on meaningful patient-doctor dialogue

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PRESS RELEASE
Publication Date: 11/07/2023

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In light of the recent article published by The Guardian on 11 July 2023 titled “ME/CFS guidance that discourages exercise is flawed, say researchers”, which critiques current clinical guidance around exercise and cognitive-behavioural therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients, we wish to emphasise how crucial it is for patients to be seen and heard in consultations - not just in guideline discussions but in every doctor-patient interaction.

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While the article raises valid concerns about evidence-base and methodology in guideline development, our focus here is on how those kinds of debates reflect a broader and persistent problem in healthcare: that the patient voice and lived experience are too often marginalised or overlooked. This is not purely about one guideline—it’s about the culture and practice of listening.

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When Doctors Don’t Listen: Patients’ Voices Must Be Heard

Research and real-life experiences show that when patients feel ignored or their narrative minimised, the consequences can be serious - for health outcomes and for trust in the system.


“Listening isn’t just courteous – it can be lifesaving,” says Claire Every, at Long Covid Advocacy. “When a patient’s narrative is shut down, the chance to spot early signs of serious conditions is lost. On the other side, patients lose faith and may even stop seeking help when they need it most.”

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Key observations:

  • Many patients describe consultations where their concerns were sidelined or overshadowed by protocols or test-results rather than the story behind the symptoms.

  • Some patients report that they go through repeated appointments without a clear diagnosis — partly because each consultation starts afresh rather than building on the conversation that preceded it.

  • A lack of time in appointments, understaffing, and an over-reliance on standardised check-lists are among the systemic issues contributing to this problem.

  • The recent discussion around ME/CFS guidelines shows that when decision-making is removed from the patient experience (or when patient experience is treated as anecdotal) the resulting guidance may feel disconnected, and consultations may feel even less patient-centred.
     

What can change?

  • Prioritise the patient narrative: Give time for patients to explain what they’re experiencing, how it affects their daily lives, and what worries them.

  • Better follow-up systems: Ensure doctors or the wider healthcare team revisit unresolved concerns rather than closing the conversation prematurely.

  • Cultural shift: Listening must be seen as a core clinical skill — not simply a ‘soft’ extra. Training and practice should reflect that.

  • Guideline development with lived experience at the heart: As seen in the ME/CFS context, when patient experience and clinical evidence are bridged effectively, the outcome is more meaningful for those living with the condition.
     

“Healthcare is more than test-results and prescriptions,” adds Dr Rupert Higham of UCL. “It’s about people. When a doctor truly hears a patient, the path to healing becomes clearer and more collaborative.”

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About Long Covid Advocacy

LCA is dedicated to improving patient-centred care by championing listening, communication and shared decision-making. Through research, advocacy and patient-led conversation, it aims to foster a healthcare system where every patient is heard.

 

ENDS

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Media contact:
hello[at]longcovidadvoc.com
www.longcovidadvoc.com

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