Might the NHS finally remove the harmful and outdated information on ME/CFS from its website?

The NHS website information page on ME/CFS has so many problems, it’s hard to know where to start. The overall picture it gives of the illness is trivialising – for instance it lists the main symptom as “extreme tiredness”, which is not an accurate reflection of this serious multisystem illness characterised by a profound lack of energy and intolerance to any and all forms of exertion. The phrase “you may find it very hard to do daily activities” does not do justice to a condition where 100% of sufferers are unable to keep up with the activities they did before they were ill, 75% are unable to work or attend school, and 25% are dependent on care. Even worse, cognitive behavioural therapy (CBT) is wrongly listed as a treatment, in direct contradiction to the NICE guidelines, giving the false impression that ME/CFS is a psychological illness.

The NHS website is trusted by both healthcare professionals and the wider public, so unfortunately these egregious mistakes have a big impact. I wrote to the NHS website team about this, and got this brief reply:

“Thank you for the feedback on the topic. We are hoping to review the content you are referring to within the next six weeks as the date of the next review has been bought forward. Kind Regards, The NHS Website Team”

I was asked to accept or reject this resolution. I rejected it, with the following message:

Thank you for your response. I’m very pleased to hear that there are plans to resolve this, however as you say you are merely ‘hoping’ to address the problem I have to assume there’s a chance it will not be addressed in a timely way. If the NHS doesn’t currently have the resources to review and update this webpage I urge you to simply take it down, as it is harmful.

Unfortunately healthcare professionals tend to be unaware of how out-dated and incorrect attitudes toward ME/CFS can impact patients and their families, so I’d like to share a few brief examples:

• A 24-year-old woman with severe ME/CFS lives in a room in her parents’ home, which she never leaves except for trips to the toilet. Her parents hand her a plate of food once a day and otherwise ignore her. They wrongly believe that she isn’t really that sick and could get back to normal life if she wanted to. They are angry with her for forcing them to care for her.

• An 8-year-old girl develops ME/CFS and begins to miss a lot of school. The paediatrician, who has out-dated views about ME/CFS, refuses to write a sick note excusing her absence. A school Attendance Officer gets involved, leading to a referral to Social Services, who threaten to take the girl into care.

• A 40-year-old man with ME/CFS lives alone. His condition deteriorates to the point that he is no longer able to care for himself, and he contacts his GP to ask for a referral to Social Care, hoping to get a carer to help him with preparing food and getting to the toilet. But the GP, who has out-dated views of ME/CFS, wrongly interprets the man’s inability to care for himself as evidence of severe mental health difficulties. The man is sectioned and forced into a psychiatric hospital against his will.

• A 13-year-old boy has mild ME/CFS. The family’s GP, who has out-dated views on ME/CFS, advises that the boy should get plenty of exercise. This causes a rift within the family as the father agrees with the GP but the mother, who has been in touch with the ME Association, believes the boy should rest and carefully pace his activities. One day when the mother is out the father spends an afternoon playing football with the boy. The boy is delighted and has a wonderful time, but later that evening he collapses and is unable even to stand. This ‘crash’ lasts for four months, during which the boy is bed-bound and unable to attend school. The father is devastated and wracked with guilt at having harmed his son.

• A 27-year-old woman with very severe ME/CFS becomes too weak to chew food. She switches to liquidised food which her mother prepares for her, but only manages to get down about 600 calories per day. She becomes malnourished and is taken to hospital. The hospital doctors have out-dated views of ME/CFS and do not believe she is really sick. She cannot be weighed as she’s unable to get out of bed, and alternative methods of assessing body mass, such as measuring arm circumference, are not used. The hospital doctors refused to provide nutrition through a nasogastric tube or by any other method. The woman is discharged from hospital and, a few months later, she dies.

These stories may sound extreme but I assure you they are all real experiences that have happened to real people. The NHS web page on ME/CFS is a trusted source both for healthcare professionals and members of the public, and therefore it exerts a strong influence, which can contribute to experiences like these. Please either update it or take it down.

I’d also like to bring to your attention the Australian version of this page, which is up-to-date and an example of good practice: https://www.healthdirect.gov.au/chronic-fatigue-syndrome-cfs-me.

Sincerely,
Katie Johnstone