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Katie J.

@kjohnstone.bsky.social

1.2K followers 550 following 246 posts

ME/CFS and related things. (she/her) I'm also trying out a more lighthearted personal account: @lighterkatiej.bsky.social

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Katie J. @kjohnstone.bsky.social · 24/01/2026

I've sent an email, I used the one from the Canary article and changed it a bit. This is so heartbreaking. 💔💔💔

A screenshot, just black text on a white background.

TO ben.travis@nhs.net
SUBJECT Urgent: Savannah Victora-May

Dear Mr Travis,

I'm writing to ask you to take urgent action to save a patient in your care at Queen Elizabeth Hospital, Savannah Victora-May. Savannah has very severe myalgic encephalomyelitis (ME), a chronic neuro-immune disease. Sadly, although ME is both very common and very serious, patients face stigma and are often dismissed and disbelieved, sometimes with tragic consequences.

Please act immediately to ensure Savannah receives intravenous fluids. Without these she may die.

Please engage with experts in ME to find the best care plan for Savannah. I understand that NHS hospitals generally do not work with private doctors. However as there are currently no ME specialists working within the NHS, you should make an exception in this case.

Most importantly, please acknowledge that Savannah's lived experience makes her an expert in her own condition. Your staff must respect her agency to refuse treatments which she knows will cause her to deteriorate further. They must listen to her and respect her wishes when she communicates the care she needs.

Unfortunately, in the past the lack of medical knowledge and training on ME has led to dangerous relapse and even death. The death of Maeve Boothby O'Neil a few years ago led to a great deal of media attention and an inquiry which recognized that hospitals do not provide adequate care to these patients. Please do not allow a repeat of such tragedies.

Yours sincerely,
Katie Johnstone

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Katie J. @kjohnstone.bsky.social · 08/09/2025

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Katie J. @kjohnstone.bsky.social · 10/10/2024

Meme: A Romulan from Star Trek holding a small device with text: "ITS A FAAAAAKE!!!!!"

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Katie J. @kjohnstone.bsky.social · 04/10/2024

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

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