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We highlight serious concerns with NHS Trust advice

April 20, 2020

Action for M.E. Chief Executive, Sonya Chowdhury, has signed an open letter calling for the withdrawal of an inaccurate and potentially harmful NHS Trust resource.

Oxford Health NHS Foundation Trust has produced a leaflet, which says it is “one of a series about Coronavirus and mental health. The leaflets contain information about how the Coronavirus outbreak might affect your mental health, how to look after yourself, what to do if a problem persists, and where to find further information.”

However, we are extremely concerned that this leaflet:

  • conflates post viral fatigue with M.E.
  • purports to provide information for post-COVID-19 rehabilitation but is predominantly comprised of rehabilitation advice for M.E.
  • provides is incorrect or misleading information, which is potentially detrimental to patients and may result in deterioration and exacerbation of disability, by recommending graded exercise.

Action for M.E.’s 2019 Big Survey revealed that only one in ten people who did GET with an M.E./CFS Specialist said it helped them manage symptoms. Almost half said it had a worsening effect with others saying it had no different.

The letter has been drafted by Physios 4 ME, a group of physiotherapists with a special interest in M.E./CFS who have recently joined Forward-ME. As well as highlighting the issues with this particular leaflet, the letter sets out clear evidence for pacing, the symptom management people with M.E. tell us they find most helpful.

We are also working with the other signatories to produce information which will be provided to the Foundation Trust to ensure they are aware of the latest evidence and patient feedback.