BJGP opinion piece: CFS/ME: an ‘invisible’ illness that benefits from a relationship-based care approach

April 22, 2022

“I find it strange that the British Journal of General Practice should publish this opinion piece almost 6 months after the publication of the new NICE guideline on ME/CFS and make no reference to the recommendations it contains.

Dr Charles Shepherd,
Trustee and
Hon. Medical Adviser
to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.

Dr Charles Shepherd


Our research suggests that a key task for doctors then is to focus on facilitating more positive professional encounters, as that in itself is useful to patients. It means GPs attempting to understand their patient’s position. If little can be done to address physical symptoms, at least the distressing emotional side of the condition can be acknowledged. This can be a tonic in itself, as one research participant said, ‘her [health professional’s] empathic nature, was her greatest skill, anything else for me came secondarily’.

In the end, patients are wanting personalised, relationship-based care.6 They want to be believed about their lived experience of the condition.7 They want to be able to discuss their beliefs about the illness in conversations where there is mutual respect, even if there are differences of opinion. They want doctors to remember that a consultation is not the full picture of their lives.

One participant explained that they could only really get to their GP on relatively good days, meaning the GP was unable to witness ‘how I am when I’m really ill’.8 Thus, patients want to gain support that acknowledges that their entire circumstances are not readily on display. They want support that minimises the impact of symptoms on everyday life.

The article is based on the research paper here (although behind a paywall)

Shopping Basket