ME Association Complaint Re: Newsnight 08 April 2021 Long Covid & ME/CFS

Dr Charles Shepherd, 14 April 2021 

Dear Sir, 

There was a serious lack of balance and information in this Newsnight report regarding the efficacy and safety of using intensifying exercise programmes in the management of ME/CFS and Long Covid.  

  1. NICE has reviewed clinical trial and patient evidence on the safety and efficacy of graded exercise therapy (GET) in ME/CFS and concluded (in the current November 2020 working draft of the new ME/CFS guideline) that GET should no longer be recommended as a treatment.  
    Extensive patient evidence has repeatedly confirmed that over half of people with ME/CFS who have been treated with GET have been made worse as a result. 
  1. The NICE guideline on Long Covid is not recommending GET for Long Covid.   
  1. Given the fact that a significant number of people with Long Covid have undetected respiratory or cardiac/myocardial damage, and that suddenly returning to an intensifying exercise programme could precipitate cardiac arrhythmias in those with cardiac damage, a warning about this potential and serious adverse event should have been included. 
  1. The statement regarding a research survey carried out by Professor Singh: 

“Medics running Long Covid clinics…… A survey of over 1000 clinicians showed over 87% supporting the use of intensifying exercise programmes” 

 …was misleading and requires a correction. 

This research was carried out in early April 2020 – well before Long Covid was recognised as a serious post COVID condition and one where undetected cardiac damage could be present.  

The respondents were mainly physiotherapists – only 6% were physicians.   

There is no reference to the safety and efficacy of using an intensifying exercise programme for people with Long Covid in this survey.  

Reference:  https://bmjopen.bmj.com/content/10/12/e040213 

I would be grateful if you could investigate these concerns and look forward to hearing from you in due course. 

Yours sincerely, 

Dr Charles Shepherd 

Hon. Medical Adviser, ME Association 

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