Healthcare experiences of young people with CFS/ME in their own words, 2025, Watson & Segal

[Dolphin]

https://adc.bmj.com/content/110/Suppl_1/A152

Young People’s Health Special Interest Group

7799 Healthcare experiences of young people with CFS/ME in their own words

Hector Watson1,
Terry Segal2

1. University Hospitals of Derby and Burton NHS Foundation Trust
2. University College London Hospitals NHS Foundation Trust

Abstract
Why did you do this work?

1. To understand the positive and negative aspects of a patient’s journey using experience maps
   
   
2. To improve Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) healthcare professionals’ understanding of the effect of each of their patient interactions on that patient‘s journey

Figure 1
Cumulative experience map generated by combining ten 30-minute interviews

What did you do?Subjects were adolescent inpatients receiving management for ME/CFS under a specialist multidisciplinary team. Discussions were conducted in the form of Experience Maps,1 a collaborative feedback device where the interviewee is guided to create a timeline of their entire healthcare journey using coloured paper and pens to represent positives and negatives.

What did you find?Many patients felt unheard before reaching the specialist service. This common complaint is exacerbated in this cohort by the complexity of the condition and the absence of investigations findings.

Between symptom onset and diagnosis, many felt confused and afraid of worsening symptoms. Unconcerned and disbelieving doctors increased feelings of hopelessness.

Diagnosis felt optimistic, although, for some the diagnosis of an often-misunderstood condition (ME/CFS) heightened their apprehension.

Under the ME/CFS service participants felt understood and appreciated fewer assumptions and shared treatment plans. Attending healthcare appointments is tiring, especially for ME/CFS patients. Developmentally- and age-appropriate surroundings improved motivation to attend.

While negative feedback persists, it shifts from emotional (e.g. anxious) to practical (e.g. medical environment).

Patients nearing discharge were uneasy, as they felt dependent on the service.

Home can be lonely for some due to ongoing disability, and for others due to past disability through formative years.

What does it mean?

Reference

1. Experience Mapping: A Tool for Sharing Patient Experience, Dr Mando Watson, Phoebe Rutherford, Rianne Steele, Dr Arpana Soni, Connecting Care for Children, Imperial NHS Trust 2024

https://doi.org/10.1136/archdischild-2025-rcpch.205
Understanding the patient perspective is essential to improving service. Obtaining feedback can be challenging, especially in populations who feel misunderstood. By changing feedback into a creative activity instead of form-filling, new areas of improvement are identified, and engagement was high. Making a positive diagnosis is an important step, as is providing information about the diagnosis. Feedback results can be acted on, such as focus on discharge planning to alleviate anxiety about this next step.

 

[rvallee]

The cycle of ME/CFS.

It's bad.
It's reported as being bad.
Nothing changes.
It's still bad.
It's still reported as being bad.
Still nothing changes.
x100

 

[Hutan]

Hector Watson1,
Terry Segal2

1. University Hospitals of Derby and Burton NHS Foundation Trust
2. University College London Hospitals NHS Foundation Trust

There's a paywall - how is that allowed when the paper serves as an evaluation* of a publicly funded service?
*albeit presumably undertaken by people with a vested interest in finding the specialist multidisciplinary team is doing good things.

Obtaining feedback can be challenging, especially in populations who feel misunderstood.

By changing feedback into a creative activity instead of form-filling, new areas of improvement are identified, and engagement was high.

That sounds as though the specialist multidisciplinary team had rather an anxious and unpleasant time with forms that could produce quantitative data. And so they turned to something that produced data that gave them a lot more scope for interpreting it as they wished.

I note that there is likely to be a huge selection bias in those young people even willing to play their game of

Experience Maps,1 a collaborative feedback device where the interviewee is guided to create a timeline of their entire healthcare journey using coloured paper and pens to represent positives and negatives.

And, 'collaborative' and 'guided' doesn't sound like an approach that is likely to provide unbiased reports.

 

[dave30th]

Terry Segal

Terry Segal was the lead author on a review of pediatric treatments. The only recommendation in the abstract was the Lightning Process, based on the Crawley study. She failed to respond to my letters expressing concern about this. And this journal, BMJ's Archives of Disease in Childhood, is the one that published the Crawley study. So it all comes around.

 

[Hutan]

Making a positive diagnosis is an important step, as is providing information about the diagnosis.

That's a rather questionable sentence. What exactly is 'positive' doing there as an adjective for diagnosis? I would much prefer an 'accurate' diagnosis to a 'positive' diagnosis, or even an 'interim' diagnosis if the physician was not sure. Providing information about the diagnosis may possibly be an important step, but most of the time is not. I think the clinic staff over-rate their impact on a disease with no effective treatments. There are many sources and qualities of information about ME/CFS - it ranges from mildly helpful to downright dangerous.

Understanding the patient perspective is essential to improving service. Obtaining feedback can be challenging, especially in populations who feel misunderstood. By changing feedback into a creative activity instead of form-filling, new areas of improvement are identified, and engagement was high. Making a positive diagnosis is an important step, as is providing information about the diagnosis. Feedback results can be acted on, such as focus on discharge planning to alleviate anxiety about this next step.

It's also odd that the sentence is sandwiched in a paragraph about feedback on the ME/CFS clinical services. I could choose to read that sentence as 'Making a positive diagnosis of these multidisciplinary clinics as being of very limited use and often causes of harm is an important step, as is providing information about exactly what is wrong and what needs to change'. Perhaps most of the anxiety referred to in that last sentence actually lies with the multidisciplinary service staff who are slowly realising that their work is not appreciated by the people they aim to help and feel anxious about what the next step for them is.

 

[Snow Leopard]

And, 'collaborative' and 'guided' doesn't sound like an approach that is likely to provide unbiased reports.

All research is biased in some way, the key is to be transparent about it. The experience map/diagram is not far off what my experience was when young, so...

I agree there is still a problem in overstating the value of a diagnosis/specialist clinic given the lack of effective treatments.

 

[Sean]

Terry Segal was the lead author on a review of pediatric treatments. The only recommendation in the abstract was the Lightning Process, based on the Crawley study. She failed to respond to my letters expressing concern about this. And this journal, BMJ's Archives of Disease in Childhood, is the one that published the Crawley study. So it all comes around.

A very tightly circled bunch of wagons indeed.

 

[Nightsong]

There's a paywall - how is that allowed when the paper serves as an evaluation* of a publicly funded service?

It's a conference abstract; if you're logged in all you get extra is the ability to download the abstract as a PDF. From the RCPCH conference in March.

 

[Amw66]

Power asymmetry is something paediatric clinicians simply do not understand.

Where educational accommodations and in some areas the functioning of the family unit can be directly affected by clinical interaction and the clinicians world view of your illness, responses may be tailored to minimise potential negative outcomes.

ETA. Or simply a normal tactic of teenagers , tell people what you think they wish to hear to make them go away