Hi All,
As many of you already know, M.E. Foggy Dog had been campaigning since November 2021 with Shake It UP demanding the creation of a reporting system to report adverse events from non-pharmaceutical ‘treatments. The associated petition, which had 9011 signatures and was accompanied by many hundreds of personal anecdotes of harm, was closed in September 2024 due to us having reached a dead end. I stated at the time that I would be pursuing a ‘Plan B’ as and when an opportunity arose.
Yesterday, it was announced that Amanda Pritchard has resigned from her position as CEO of NHS England.
I believe the change in NHS senior management and the rumoured change of direction now being sought by Secretary of State for Health and Social Care, Wes Streeting MP, could be the ‘opportunity’ we’ve been waiting for.
You can see the work that has already been done on this campaign via this link.
The next phase has now started.
The following was sent in the post yesterday 25th February 2025 –
Formal Complaint: Negligence in Patient Safety Regarding Non-Pharmaceutical Treatments for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Dear Secretary of State,
This constitutes a formal complaint regarding the ongoing failure to implement a robust reporting system for adverse events related to non-pharmaceutical treatments (NPTs) offered to patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) within the National Health Service (NHS). This lack of a reporting mechanism represents a serious and unacceptable negligence in patient safety.
For over three years, we have been campaigning for the establishment of such a system. Our efforts, including a petition signed by over 9,000 individuals, have been consistently disregarded. We believe this inaction demonstrates a deliberate attempt to avoid collecting data on potential harms arising from these treatments, thereby preventing proper scrutiny and accountability.
Specifically, we are deeply concerned about the lack of reporting mechanisms for adverse events associated with commonly prescribed NPTs for ME/CFS, such as graded exercise therapy (GET) and cognitive behavioural therapy (CBT). The continued failure to establish a reporting mechanism is a violation of fundamental patient safety principles. The NHS has reporting systems for pharmaceutical interventions and medical procedures, yet no comparable system exists for therapies that have been widely documented as causing harm to ME/CFS patients. This discrepancy is unacceptable and discriminatory.
Furthermore, the 2021 NICE guideline update explicitly recommended against the use of GET due to evidence of harm. However, despite this, many NHS services continue to offer GET (in many forms) and CBT in ways that contradict the updated guidance. Without a formal reporting structure, patients are left without recourse when they suffer worsening health due to inappropriate treatment recommendations.
The absence of a reporting system contravenes fundamental principles of patient safety and clinical governance. It prevents healthcare professionals from learning from adverse events, impedes research into the long-term effects of these treatments, and denies patients the right to informed consent based on a comprehensive understanding of potential risks. Furthermore, it undermines the ability of patients and clinicians to make shared decisions about care based on the best available evidence.
We believe this failure to act is a clear breach of the NHS’s duty of care to patients with ME/CFS. We request an immediate and thorough investigation into this matter, including:
- The reasons for the continued failure to implement a reporting system for adverse events related to NPTs for ME/CFS.
- The number of patients who have potentially experienced harm from these treatments.
- The steps that will be taken to establish a robust and independent reporting system without further delay.
- How accountability will be ensured for those responsible for this negligence.
We expect a formal response to this complaint within 6 weeks outlining the actions that will be taken to address our concerns. We are prepared to escalate this matter to the Parliamentary and Health Service Ombudsman and other relevant authorities if a satisfactory response is not received.
We urge you to treat this matter with the seriousness it deserves and take immediate action to protect the safety of patients with ME/CFS.
Sincerely,
Sally Callow, Manager – ME Foggy Dog
Week ending 11th April 2025
As you have just read, the Department for Health and Social Care/West Streeting MP/Ashley Dalton MP have been given 6 weeks to respond/take action. This means they have until Friday 11th April 2025. Then we go to the next step, as detailed in the letter.
In the coming days, I will be creating a wider campaign for the community to get involved in to apply pressure over the next 6 weeks.
Stay tuned!
ps. I could do with a hand with creating content and admin for this campaign so please let me know if you are able to give me an hour or two of your energy per week. Get in touch!