Katie J.
LightNews LightNews
banner
kjohnstone.bsky.social
Katie J.
@kjohnstone.bsky.social
1.2K followers 560 following 160 posts
ME/CFS, and other things. (she/her)
Posts Replies Media Videos
kjohnstone.bsky.social
September 8, 2025 at 12:41 AM
kjohnstone.bsky.social
Meme: A Romulan from Star Trek holding a small device with text: "ITS A FAAAAAKE!!!!!"
October 10, 2024 at 5:10 PM
kjohnstone.bsky.social
This is my feedback on the final draft of the second NHS educational module on ME/CFS. I'm very concerned about the module because I feel it doesn't give clinicians sufficient warning (or any warning) that exercise and exertion can be harmful. I hope very much the feedback is taken on board!
Dear David Strain, I'm sorry to say that I am extremely concerned about the second module. In its current form it is dangerous and harmful. It would be better to cancel the module altogether than to publish it as it is now. The module fails to warn clinicians that exercise and other forms of exertion can cause long-term harm to people with ME/CFS. As you are no doubt aware, many GPs and other healthcare professionals believe people with ME/CFS should be advised to exercise. The module does not provide them with a clear warning that this approach may cause harm. It does explain that exertion can cause PEM and symptom exacerbation, but it does not warn that this is dangerous and can cause long-term deterioration. A doctor who worked through this module might (wrongly) think: "Exercise causes PEM, but it also has many benefits, so on the whole exercise will benefit my patient." In fact the module, as it is currently written, would convince clinicians that exercise is NOT dangerous or harmful. After all, if exercise could cause harm, surely the NHS educational module would have mentioned it! This would lead to increased dismissal of patients' concerns, increased gaslighting, poorer outcomes for patients, and increased conflict between patients and clinicians. Countless people with ME/CFS have had their lives ruined because a clinician recommended exercise without warning of the dangers, leading to deterioration and increased disability. The module in its current form would encourage a repeat of this tragedy, with a new generation of patients. The understanding that exercise can be harmful to people with ME/CFS is very well-established, however if for some reason you need a review, I outlined some of the evidence here: https://mecfs.substack.com/p/exercise-and-other-forms-of-exertion. I remind you that the NICE guidance states: "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". It is very hard to understand why this crucial guidance is not included in the module. To exclude this would be a gigantic step backwards for medical understanding and patient safety. I know we're late in the process, but I urge you to contact the group Physios for ME at [email address]. They are experts in precisely this topic and can provide the expertise that is urgently needed here. Ask them to write a short piece of text outlining the dangers associated with exercise and over-exertion and the factors that patients and healthcare professionals who support them must consider in order to do exercise and other activities safely. Please make sure to include this text in a prominent place in the module, not buried at the bottom. I've discussed this online and I can assure you that these concerns are shared by many others in the ME community. Sincerely, Katie Johnstone
October 4, 2024 at 6:39 AM