Decade-old guidelines to assess chronic fatigue might not be good enough, a tribunal has warned, after an islander who felt his “whole body shutting down” was assessed as less incapacitated than if he had lost a thumb.
The Social Security Medical Appeal Tribunal said that doctors should follow the guidelines they are given to ensure consistency, but asked to find out more about those for chronic fatigue and the related condition myalgic encephalomyelitis – which haven’t been updated since 2016.
Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a chronic illness which causes profound fatigue that does not go away with rest, as well as sleep issues and problems with memory or concentration.
The recent tribunal case revolved around an islander who suffered from chronic fatigue syndrome and received long-term incapacity benefits since April 2024, having suffered from long covid fatigue since 2020.
An LTIA assessment – in which a doctor ranks to what extent someone’s illness or condition affects them – initially gave the islander a score of 11%, and a second doctor said he was 20% affected.
This placed them at the top end of the “mild” category and entitled them to 20% of LTIA, or £59.15 per week.
In comparison, someone who had lost a thumb was assessed at 30% loss of faculty, which would amount to £88.73 per week.
The myalgic encephalomyelitis patient took the case to the Tribunal, arguing that the guidelines for chronic fatigue were “less generous than other guidelines for conditions which have a lesser effect on everyday functioning”.
Guidelines published by the government place someone in the 21-30% range if they are:
- unlikely to work due to fatigue and some cognitive impairment
- able to walk around 100 metres but fatigued after
- usually able to manage personal care, although slowly and followed by a period of rest
- and if they may have received specialist input.
By comparison, someone in the “mild” range between 11-20% would:
- have difficulty with work attendance due to fatigue
- be able to manage personal care
- be able to walk 100 to 200 metres
- take longer than normal on tasks and may need to take periods of rest afterwards.
The Tribunal heard that the islander had felt his “whole body shutting down”, spent some time in hospital, and had never fully recovered.
He was working part-time, “managing an hour or two at a time”, the Tribunal heard, and trying to do some activities like walking the dog and engaging in “low-level” physical activity.
A holiday abroad was “tiring”, the islander said, and he now “only socialised rarely”.
He didn’t criticise the doctor’s assessment, the Tribunal heard, but criticised “the way in which the Department’s guideline was drafted and its inappropriateness for a multifaceted condition such as theirs”.
Panel chair Advocate Simon Thomas, wrote: “The real issue in this appeal, it seems to us, concerns the CFS/ME guideline and whether it is fit for purpose when dealing with cases of post-viral syndrome such as long covid, which is relatively unknown and presents with a multiplicity of symptoms.”
Though the appeal was dismissed, the Tribunal asked the Health Department to provide the guidance, asking “to what extent consideration has been given to reviewing it” to take into account post-viral illnesses with “a multiplicity of symptoms”.