NICE Guidelines on ME Treatment Delayed

This picture of the author doesn’t show her years of suffering with ME – Source: Author

I want to begin by casting your memory back to four years. Four years ago, I sat in a neurologist’s clinic being told that the tests I’d endured were clearly not showing any reasons for my chronic fatigue, numbness and cognitive issues. The neurologist came to the conclusion that it had to be ‘Chronic Fatigue Syndrome’. It was a diagnosis that came crushing down because there would be no cure or support. The neurologist said “I’d suggest you see your local mental health clinic and begin a course of gradually building your exercise tolerance”.

For those who do not have experience in chronic illness or are unaware recommended treatments, you might not be familiar with ‘Graded Exercise Therapy’ (GET). GET is the incremental increase in physical activity to gradually build up tolerance. GET has been recommended for years by the National Institute for Health and Care Excellence (NICE) for the treatment of ‘Myalgic Encephalomyelitis or Chronic Fatigue Syndrome’ (ME/CFS) and still appears in NHS guidance. A three year study concluded that GET was not only ineffective but in many cases damaging. In August, NICE were due to publish a change to remove GET from their treatment guidelines but hours before the deadline the publication was “paused”. NICE claimed this delay was due to needing more conversations with patient groups and professionals. This is surprising because it has already been reported that only 1 in 10 patients find the gradual exercise route to be effective. If this statistic had been for a different condition, I am positive that the delay wouldn’t been allowed.

My Experience with GET

For me, as an ME sufferer, I’ve always found the GET treatment plan to be insulting to someone with not only  chronic fatigue but a whole load of symptoms including chronic pain . I’ve had experience of “exposure therapy”, part of Cognitive Behavioural Therapy (CBT), for treating my Obsessive Compulsive Disorder (OCD). It works like GET. It implies that if you expose yourself to exercise gradually, you’ll eventually be able to do what you used to be able to do. In the same way, we treat someone with a phobia. A person scared of birds like me would be gradually exposed to birds starting at a distance and ending up being put into the centre of the bird enclosure! The treatment suggests that you have something that you need to “overcome”, almost like your mind is holding you back. I do believe, that this treatment was created to support the thinking in medical land that the condition is a mental health one rather than a long term physical invisible illness. This resulted in the early media description of the condition as “Yuppy Flu”.

In my early months of coming to terms with the condition, I tried CBT and GET, both of which were not suitable for treating me. In fact, everyone said that exercise would help to ease my fatigue. Once you’ve read these words, type in another tab of your browser, ‘fatigue’ and I bet you’ll be told that exercise will help. Take Joe Wicks who claims exercise fixes everything. He might be great to look at but he’s not correct. Most ME patients were in fact athletic, busy and active people but this illness ruined their mojo, so to speak. In my original treatment plan, the neurologist gave me a pack that outlined how I should build up my exercise regime. It said things like “if you can manage going up the stairs, then go for a walk outside. Then, try walking on a treadmill“. Yet this has never been an effective way of treating ME, and it actually made my symptoms worse.

My outcome reflects most of the ME community who thought this might be able to help or ‘cure’ them. I’m sure, if it had worked, I’d be running up my road shouting to the world “I’m cured“. Prior to my diagnosis, I would be in the gym several times a week and I regularly went to an aerobics class. When I followed my neurologist’s advice and tried to go back to the class, I nearly passed out in the changing room. On another occasion, I tried power walking 15-minutes from the office to the train station, as I had been told it might make me feel better. I had always been told that exercise can reduce fatigue; and most of the world and Google think this is true. It’s not. I ended up fainting on the train because the activity level was too much for my body.

Clinicians ignore ME Sufferers’ Experience

The delay in the changes to the NICE guidelines is a symptom of the continued ignorance towards ME. I believe that if the medical profession had been supportive and understanding towards the ME/CFS community, we could be in a position where we wouldn’t be questioning the validity of GET in a scenario where most ME sufferers are badly affected by this treatment. Andrew Goddard, president of the Royal College of Physicians, said:

We were extremely concerned that the final guidelines proposed by NICE may not have taken into consideration the extensive comments we made to the draft version, particularly in relation to treatments we know to have significantly benefited many patients. There is reasonable evidence, for example, that graded exercise therapy helps a group of patients with ME/CFS and, while not without risk, our experts strongly support its ongoing use as an option in this condition.”

Andrew’s words are frustrating and offensive towards people like myself who went from being in the gym twice a day five times a week to being unable to speak or walk. I think, this is where the understanding is poor and medical professionals do not see the extent of the condition. By delaying the changes, NICE is saying ME/CFS is not worth proper treatment.

I urge NICE to review the findings against experiences of ME patients because this would make the decision to remove GET much easier. I’d love to imagine a time where professionals do not see ME as a descriptive label or a scapegoat diagnosis to shut the patient up who is in the waiting room weekly. I fear that keeping GET or CBT just feeds an old fashioned belief that the condition is a fancy mental condition that needs to be exercised away. It is sad, because unless we acknowledge the failures in diagnosing, treating and supporting ME patients we will make the same failures for the hundreds living with long COVID.

Ed: Update 15 September … Apparently the NICE recommendations have been leaked. See this report in The Canary.


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