Do not offer people with ME/CFS:

• any therapy based on physical activity or exercise as a cure for ME/CFS
• generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses
• any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (see box 4)
• physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.

https://www.nice.org.uk/guidance/ng206

The NICE guidelines for the treatment and care of people with M.E were published last week after months of delay. It feels like a big win for M.E sufferers and supporters, Graded exercise therapy has finally been removed from the recommended treatment for M.E/CFS. I was prescribed graded exercise therapy 2 years after I developed M.E, I knew nothing about this treatment or what it would entail. The whole experience is something that has been engraved in my memories and just thinking about it still brings feelings of anxiety and depression. In my first appointment I met my physiotherapist who wanted to know why I’d been referred; when I told her it was because of M.E she just stared at me blankly. She had never heard of M.E, had no idea what the symptoms were or what kind of illness it was. I had to explain myself and my illness, when I barely understood it myself. That initial meeting left me with a lot of doubts because I couldn’t understand how anyone could help me manage a condition they’d never heard of. I was given exercises that I performed for the physio and then had to continue and gradually increase every week. I remember thinking it sounded easy, that it sounded gentle and the word ‘gradual’ made me feel like I had time to improve, there was no pressure. I was completely wrong about all of that. It wasn’t easy, initially it was just a few exercises to fit into the day but every week I had to increase the amount of times I did the exercises and new exercises were added. Every week I increased the exercises was met with pain and overwhelming muscle fatigue. My fatigue worsened and I was told to push through the pain, that it was in my head and I just had to get past that block. Every time I went back I had to perform the increased amount of exercise and when I couldn’t complete the amount of reps or do all the exercises, then I was made to feel like I was being lazy, like I wasn’t trying. I dreaded those appointments. I dreaded going in and not being able to perform all the exercises and I dreaded when I’d be sent home with a list of more exercises to add on to the ones I already couldn’t manage. There was no patience, there was no understanding. When I expressed the amount of pain and fatigue I was feeling, I was ignored and told it would fade and eventually my body would get used to the new levels of exercise. The whole experience was so disheartening, it was mentally and physically damaging. For a year after, I spent the majority of my time bedbound because my body had just crashed, I’d pushed and pushed my body when I should have listened to it’s warnings. But when a health professional is telling you it’s in your head and it will get better then you’re inclined to listen because they are the professional. It was at that point that I realised, not all health professionals knew best.

The update to the NICE guidelines for treatment of people with M.E/CFS was delayed due to the response from health professionals who were adamant that they knew better; Doctors who supported graded exercise therapy and claimed it was a useful treatment despite the scientific evidence stating otherwise. That’s the most frustrating part for me. Doctors and health professionals are in a scientific field, medicine is science. Yet when science proved that graded exercise therapy was not beneficial in the treatment of M.E; that it was actually harmful in the majority of cases; a whole lot of doctors and health professionals refused to listen. They made their feelings known, that despite the scientific proof, they wanted to continue prescribing a harmful treatment. It defies all logic, but there are a number of doctors etc who believe they know better, who believe their opinion overrules the science. In this day and age it’s ridiculous that there are doctors out there who would ignore, not only the science, but patients actual experiences. This update to the NICE guidelines is a win but the fact it was delayed so long and fought against by so many health professionals proves that support for this disease still has a long way to go. There are still too may doctors who are ignorant, who have never been educated on this condition. There is still the misconception that it is a psychological illness instead of a physical and neurological disease. For me, a sufferer of M.E; it feels as if we’ve won a battle but we’ve still not won the war. There is still a lot more fighting to do.