PATIENT OUTCOMES
Case reference FOI2026/01174
Received 21 April 2026
Published 8 October 2026
Request
I am writing to request information under the Freedom of Information Act 2000 regarding outcomes for patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) attending your service.
For the purposes of this request, "gainful employment" is defined as the ability to sustain paid work of at least 30 hours per week for a continuous period of 12 months without significant relapse or deterioration in symptoms.
I am particularly interested in patients with long-term or more severe presentations, specifically those who:
Have had symptoms for 5 years or more, have a low baseline level of functional capacity, have experienced progressive or sustained deterioration over time.
Please provide the following information if held:
1. Does your service consider restoration to the level of gainful employment defined above (30 hours per week sustained for 12 months without significant relapse) to be:
- An expected or typical outcome, or
- Not an anticipated outcome
for patients with illness duration of 5 years or more and/or low baseline function?
2. Does your service hold any outcome data, audit findings, or evidence demonstrating that patients meeting the above criteria achieve and sustain this level of work capacity following treatment?
3. If yes, please provide a summary of the data (including numbers of patients, timeframes, and success rates). If no, please confirm this explicitly.
4. If restoration to sustained 30-hour work capacity is not considered an expected outcome for this group, please confirm:
a) What level of functional improvement is typically expected (e.g., modest gains, stabilisation, or symptom management only)?
b) Whether your service tracks or records return-to-work outcomes specifically for patients with illness duration ≥5 years or low baseline function. If so, please provide any available summary data.
5. Copies of any current service specifications, clinical guidelines, or commissioning documents that describe expected outcomes for patients with long-term or severe ME/CFS.
Response
I am writing to request information under the Freedom of Information Act 2000 regarding outcomes for patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) attending your service.
For the purposes of this request, "gainful employment" is defined as the ability to sustain paid work of at least 30 hours per week for a continuous period of 12 months without significant relapse or deterioration in symptoms.
I am particularly interested in patients with long-term or more severe presentations, specifically those who:
Have had symptoms for 5 years or more, have a low baseline level of functional capacity, have experienced progressive or sustained deterioration over time.
Please provide the following information if held:
1. Does your service consider restoration to the level of gainful employment defined above (30 hours per week sustained for 12 months without significant relapse) to be:
- An expected or typical outcome, or
- Not an anticipated outcome
for patients with illness duration of 5 years or more and/or low baseline function?
The service does not hold expectations regarding level of employment for patients with any duration of illness or level of function. Each patient is different, has different goals and circumstances.
2. Does your service hold any outcome data, audit findings, or evidence demonstrating that patients meeting the above criteria achieve and sustain this level of work capacity following treatment?
The service does not hold outcome or audit data categorised as per the above criteria.
3. If yes, please provide a summary of the data (including numbers of patients, timeframes, and success rates). If no, please confirm this explicitly.
The service does not hold data categorised by illness duration or low baseline function.
4. If restoration to sustained 30-hour work capacity is not considered an expected outcome for this group, please confirm:
The service does not have specific expectation for outcomes as goals vary.
a) What level of functional improvement is typically expected (e.g., modest gains, stabilisation, or symptom management only)?
There are no functional improvement expectation specific to patients with an illness duration of 5 years or with low baseline function because each patient is different and has their own goals.
b) Whether your service tracks or records return-to-work outcomes specifically for patients with illness duration ≥5 years or low baseline function. If so, please provide any available summary data.
The service does not specifically track return to work outcomes for patients with an illness duration of 5 or more years or low baseline function.
5. Copies of any current service specifications, clinical guidelines, or commissioning documents that describe expected outcomes for patients with long-term or severe ME/CFS.
Service documentation and guidelines do not specify expected outcomes for patients with long-term or severe ME/CFS.
Documents
This is Oxford University Hospitals NHS Foundation Trust's response to a freedom of information (FOI) or environmental information regulations (EIR) request.
You can browse our other responses or make a new FOI request.