UK ME Association 2025: Prognosis, Permanency and Quality of Life in ME/CFS

I have only skimmed it through. I found this part odd:

"Factors which may indicate a better prognosis:​
​
- Early diagnosis with appropriate identification and management of any other factors – physical, psychological and/or social – which may be relevant.​
​
- An acute-onset illness, often post-viral, particularly when this occurs in the presence of an uncomplicated psychological background.​
​
- Onset in older age (Ghali et al, 2022).The MEA website section called Medical Matters covers ageing and ME/CFS in more detail:https://meassociation.org.uk/7k4c​
​
Factors which may indicate a less favourable prognosis:​
​
- Diagnostic delay, especially when this is accompanied by no management or bad management during the very early stages of ME/CFS.​
​
- Onset of symptoms following a severe infective illness or without any clear precipitating event.​
​
- Background of adverse psychological and social factors.​
​
- Co-existence of other chronic medical conditions.​
​
- Management which has involved inappropriate guidance on activity and energy management or failed to recognise symptoms which may be treatable to some extent.​
​
- Presence of severe, unremitting, and often multiple symptoms. "​
​
 
I agree. I noticed that too. I haven't seen any evidence of psychological factors affecting prognosis. Adverse social factors I can see having an effect, for example poor housing, financial deprivation, family and work pressures, all affecting the ability to manage activity and get sufficient rest.
 
Wyva said:
I have only skimmed it through. I found this part odd:

"Factors which may indicate a better prognosis:​
​
- Early diagnosis with appropriate identification and management of any other factors – physical, psychological and/or social – which may be relevant.​
​
- An acute-onset illness, often post-viral, particularly when this occurs in the presence of an uncomplicated psychological background.​
​
- Onset in older age (Ghali et al, 2022).The MEA website section called Medical Matters covers ageing and ME/CFS in more detail:https://meassociation.org.uk/7k4c​
​
Factors which may indicate a less favourable prognosis:​
​
- Diagnostic delay, especially when this is accompanied by no management or bad management during the very early stages of ME/CFS.​
​
- Onset of symptoms following a severe infective illness or without any clear precipitating event.​
​
- Background of adverse psychological and social factors.​
​
- Co-existence of other chronic medical conditions.​
​
- Management which has involved inappropriate guidance on activity and energy management or failed to recognise symptoms which may be treatable to some extent.​
​
- Presence of severe, unremitting, and often multiple symptoms. "​
​
Click to expand...

When reading this, my first thought was is all of this evidenced and with assertions that are not evidenced would we see a consensus amongst the ME/CFS community that they seem reasonable.
  • Is it true that psychological status at onset relates to prognosis?
  • Do we know that acute onset with an associated infection sees a better prognosis than gradual onset?
  • Does diagnostic delay of itself cause a poorer prognosis or is it associated bad management?
  • Is this content influenced by BACME ideas that very much stress early referral to a multidisciplinary team is essential for a better prognosis, but I fear referral to a UK specialist service will not necessarily result in appropriate or good management?
  • About age at onset presumably they just mean older age onset means a better prognosis only in relation to adults as it is generally accepted that children have a much better prognosis, which if I remember correctly from reading the full document yesterday is mentioned elsewhere in the document. However at best this is clumsily worded.
  • Etc
Though the document contains some useful information, when I first read it my reaction was that I needed to read it more carefully to be clear if I felt it overall useful or if it could be misleading? So I must return to the whole document.
 
An acute-onset illness, often post-viral, particularly when this occurs in the presence of an uncomplicated psychological background.
Click to expand...

Standard PR test: If you advance an opinion for which there is no scientifically robust way of obtaining and replicating evidence, people may assume you're motivated by prejudice. Is this what you're trying to achieve?

Peter T said:
Does diagnostic delay of itself cause a poorer prognosis or is it associated bad management?
Click to expand...

It depends on what's meant by prognosis.

It's clear inappropriate management results in worsened symptoms, and a substantial proportion of people with ME/CFS report long term or permanent worsening.

But we don't know whether inappropriate management affects the likelihood of recovery—it may not.
 
The other element I'd disagree with is the decision to alter the commonly used prevalence estimate:
Based on the most recent research evidence from the University of Edinburgh (Samms and Ponting, 2025), around 400,000 adults and children in the UK have ME/CFS.
Click to expand...
I'd strongly disagree with the idea that this one study alone, based on a review of coded G93.3 diagnoses in secondary care in NHS HES statistics, constitutes sufficient evidence to increase the very long-standing prevalence estimates, usually considered to be in the ~0.1-0.4% range, to 0.6%. (Off-topic for this thread, but my view is that 0.6% is likely to be an overestimate.)
 
Apparently, MEA and AfME have jointly agreed to use the 0.6% prevalence statistic (I don't remember seeing this discussed on S4ME). In my opinion this is a serious mistake.
The ME Association has reached agreement with Action for ME that we will each adopt the latest research evidence from Professor Chris Ponting and Gemma Samms at the University of Edinburgh.

This suggests that 403,922 or 0.6% of adults and children in the UK would have a lifetime prevalence of ME/CFS (a 62% increase from historic estimates of 250,000), if there were minimal social and healthcare barriers to a diagnosis.
Click to expand...
https://meassociation.org.uk/2025/0...e-on-historic-estimates-for-me-cfs-in-the-uk/
 
"This suggests that 403,922 or 0.6% of adults and children in the UK would have a lifetime prevalence of ME/CFS"

"Based on the most recent research evidence from the University of Edinburgh (Samms and Ponting, 2025), around 400,000 adults and children in the UK have ME/CFS."

As I understand it these are two quite different statements. One is lifetime prevalence. The other is current prevalence. If the lifetime prevalence, as claimed by Ponting, is 403,922 then my guess is that the old estimates for current prevalence stay unchanged at around 0.4%, or likely closer to 0.2%. As far as I can see the Ponting data may actually suggest the prevalence is at the lower end of what we thought.
 
Peter T said:
When reading this, my first thought was is all of this evidenced and with assertions that are not evidenced would we see a consensus amongst the ME/CFS community that they seem reasonable.
  • Is it true that psychological status at onset relates to prognosis?
  • Do we know that acute onset with an associated infection sees a better prognosis than gradual onset?
  • Does diagnostic delay of itself cause a poorer prognosis or is it associated bad management?
  • Is this content influenced by BACME ideas that very much stress early referral to a multidisciplinary team is essential for a better prognosis, but I fear referral to a UK specialist service will not necessarily result in appropriate or good management?
  • About age at onset presumably they just mean older age onset means a better prognosis only in relation to adults as it is generally accepted that children have a much better prognosis, which if I remember correctly from reading the full document yesterday is mentioned elsewhere in the document. However at best this is clumsily worded.
  • Etc
Though the document contains some useful information, when I first read it my reaction was that I needed to read it more carefully to be clear if I felt it overall useful or if it could be misleading? So I must return to the whole document.
Click to expand...

"Is it true that psychological status at onset relates to prognosis?"

I think we have no data here whatsoever.

It's possible that psychological status as in poor psychological status is likely to make managing ME symptoms more challenging. But that's an assumption, not based on evidence.

The vast majority of pwME have emotional functioning (by subjective questionnaires - so overlap with some mental health conditions) to be mildly raised. As expected in the general population some people have additional issues.

How any of this relates to prognosis is anyones guess.
 
Utsikt said:
And because it’s an acquired disease, the current prevalence will be lower because some of the people that are alive today have not got ME/CFS yet?
Click to expand...

Or got better, but maybe mostly didn't get it yet. With younger people having a reasonable reported rate of recovery my best guess is that the two numbers relate by a factor of about 2.5. So Ponting's figure goes to 160,000 people with ME/CFS at the moment.
 
Interesting that I've seen the following on social media today, which is about a research project looking into long term prognosis of children and adults with long covid and ME/CFS:



My name is Nikki Clague-Baker and I am a researcher at the University of Liverpool and a founding member of Physios for ME. I am working (with Long Covid Support and many others including Dr Mark Faghy, Prof Doug Kell, Prof Resia Pretorious and Dr Binita Kane) on a research proposal which is due to be submitted on 15th August. It is worth £500,000 and it is a funding pot with the Chartered Society of Physiotherapy. The title of the project is: Long-term prognosis of children and adults with Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome after discharge from clinics in N Wales and NW England.

We have eight people on our patient advisory group with ME/CFS and LC or both, with a range of severities. We recognise that ME/CFS and LC can affect anyone of any age, ethnicity and background. Our group has good representation of gender and age in people from white backgrounds, but we would specifically like to include more Black and Asian people. It is important that our study has input from a wide range of demographics so that we can design a study that works for everyone. Anyone who is named on the proposal as part of the patient advisory group will be reimbursed for their time at the recommended rate. The study will take place in N Wales and NW England so we would prefer people on the group who are familiar with these areas, however, it is not essential.

If you are interested and might want to get involved please email me at: nicola.baker@liverpool.ac.uk
Thank you
Nikki
 
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