Recommendations for Patients with Post COVID-19 Condition

Russell Fleming, Content Manager, ME Association 

This is a new review providing recommendation for the clinical management of people with Long Covid within the NHS. It was produced by Martine Nurek from Imperial College and colleagues from NHS hospitals including Brian Delaney:

This is a pre-print publication that may or may not eventually appear in the Lancet. Such publications are defined as, “early-stage research papers that have not been peer-reviewed.” 

Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, has left a detailed comment about this review, which we have reproduced below. We hope the authors will consider all the comments and make amendments to their recommendations where appropriate. 

Abstract 

Recommendations for the Recognition, Diagnosis, and Management of Patients with Post COVID-19 Condition (‘Long COVID’): A Delphi Study 

Background: The present work aims to provide a rapid expert guide for Post Covid-19 Condition (“long covid”) clinical services. In the absence of research into mechanisms, therapies, and care pathways, yet faced with an urgent need, guidance based on “emerging experience” is required. 
 
Interpretation: Long covid clinics need to operate not in isolation but in the context of rapidly evolving practice amongst both GPs and specialists. Care pathways in holistic care, investigation of specific complications, management of potential symptom clusters in cardiac disease, dysautonomia and mast cell disorder, and individualised rehabilitation are needed. 

Dr Charles Shepherd

There is a lot of helpful information and guidance relating to the clinical assessment, diagnosis, and management of people with Long covid in this paper and I hope you succeed in getting it published. 

However, I was very disappointed to find that there was no meaningful reference to the important clinical and pathological overlaps between Long covid and ME/CFS and the way in which knowledge and skills about ME/CFS could be helpful to both clinicians and people with Long covid. 

The comment “merely post-viral fatigue” indicates that there is still a serious failure to understand that people with a disabling and persisting post-viral syndrome such as ME/CFS also have a complex disease process involving a cluster of symptoms: 

  • activity induced fatigue,  
  • post-exertional symptom exacerbation, 
  • cognitive dysfunction,  
  • dysautonomia – orthostatic intolerance, PoTS etc.,  
  • neuropathic and musculoskeletal pain  
  • sensory disturbances,  
  • hypersomnia and unrefreshing sleep, and,  
  • disturbed thermoregulation, 

…that are commonly found in Long Covid. 

There is also a misunderstanding that on-going cardio-respiratory and other symptoms/organ damage relating to the triggering infection in Long covid is a unique feature to this particular type of post-viral illness. 

Whilst most people with ME/CFS do not have specific and clinically significant symptoms relating to the triggering infection some do. On a personal basis, as a doctor who developed ME/CFS following chickenpox with an encephalitic component, which was caught from a patient with shingles, I still have cerebellar dysfunction which has significant consequences on my balance. 

I hope you will therefore consider acknowledging the clinical overlaps between ME/CFS and Long Covid – mainly because the knowledge and experience that charities such as the ME Association have built up over many years to help people with activity, energy, and symptomatic management along all the other issues relating to DWP benefits, education and employment, mental well-being, nutrition, social care etc. that are going to affect people with Long Covid could be of great help to them. 

At the moment this input is largely being ignored in the wider debate that is taking place on how best to help people with Long Covid – one exception being the possible role of graded exercise therapy in Long Covid and contrasting this with the very harmful effect that this approach to activity management can often have in ME/CFS. 

This policy of ignoring the links to ME/CFS is not helpful to many people with Long Covid, especially those who no longer have any evidence of Covid-19 related pathology and now have a clinical presentation that would meet with the diagnostic criteria for ME/CFS. 

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