Long Covid – What can we learn about the cause and management from ME/CFS?

Dr Charles Shepherd

Hon Medical Adviser, ME Association @meassociation

Three years ago nobody had heard of Long Covid – the patient derived name for a variety of symptoms and continuing ill health that may affect around 10% of people who catch COVID-19 and which persists for three months or more.

The numbers are huge. Data from the Office of National Statistics indicates that over 500,000 people with Long Covid here in the UK are still unwell two years after catching COVID-19. And while some are improving or recovering, over 300,000 have significant limitations to their day-to-day activities.  Long Covid is becoming a major cause of disability and absence from work, especially in the health and social care sectors.

Not surprisingly, Long Covid now receives more media attention than the infection that triggered it and vast amounts of money are being spent on trying to find the cause and an effective form of treatment.

But do some of the answers lie with what we already know about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – a condition that often follows a viral infection and has very similar demographics, symptoms and research findings relating to the possible causation to Long Covid?   I believe they do.

Let’s start off by going back to the beginning of the pandemic in 2020 when it soon became apparent that increasing numbers of people were not recovering from COVID-19.

Some had been seriously ill in hospital with many in this group continuing to experience cardiovascular and respiratory symptoms.

But there were lots of people developing Long Covid who had not been in hospital, not had a severe infection, and did not have any other health problems.

Long Covid has an almost endless list of symptoms – partly reflecting the fact that COVID-19 can involve almost any organ or tissue in the body. Common symptoms that may relate to organ or tissue damage from the time of the acute infection include breathlessness, chest pains, palpitations, loss of taste or smell.

But just as common are a cluster very disabling symptoms – cognitive dysfunction/brain fog, dysautonomia (including orthostatic intolerance and postural orthostatic tachycardia syndrome), debilitating fatigue and post-extertional malaise/symptom exacerbation, and muscle pain – that are highly characteristic of other post-viral syndromes, ME/CFS in particular.

So a significant proportion of people with Long Covid are also meeting diagnostic criteria for ME/CFS.

When it comes to the possible cause of Long Covid, several abnormalities have been identified that are already documented in ME/CFS:

  • Low level immune system activation and neuroinflammation
  • An autoimmune component
  • Reactivation of latent herpes virus infection – including Epstein-Barr virus
  • Defective muscle energy metabolism involving mitochondrial dysfunction
  • Downregulation of the hypothalamic-pituitary-adrenal axis and mild hypocortisolaemia
  • Overlap with mast cell activation syndrome

However, there are also findings that are not consistent with what we currently know about ME/CFS.  In particular:

When it comes to treating the underlying disease process in Long Covid, whatever that is, a wide range of interventions are now being assessed – largely based on these clues to possible causation.

Those that could also have a role in the treatment of ME/CFS include the use of low dose naltrexone, AXA1125 – an amino acid supplement aimed at improving mitochondrial function, antihistamines and a low histamine diet, hyperbaric oxygen therapy, prebiotics and probiotics, and co-enzyme Q10.

Trials into the use of apheresis – a controversial treatment that is claimed to remove micro-clots and the antiviral drug Paxlovid have less relevance to ME/CFS in our current state of knowledge.

In the absence of any effective treatments for Long Covid the NHS has set up a network of over 90 Long Covid clinics where people should receive a detailed clinical assessment to check for organ damage, make sure a diagnosis of Long Covid is correct, and provide good symptomatic management.

Many of these clinics are being led by health professionals working in respiratory, cardiac and rehabilitation medicine.  They therefore have the expertise to assess and manage the cardio-respiratory components of Long Covid – where they exist.

However, there are concerns over what these clinics can do in the way of other aspects of management, especially when some health professionals have no previous experience in dealing with post-viral syndrome symptomatology and disability.

The ME Association has heard from people who have not received appropriate advice on activity and energy management in particular – even though NICE warned against the use of graded exercise therapy back in July 2020.  Others are now being transferred to psychology to manage their perplexing symptoms or being discharged because ‘there is nothing more that can be done’. The management and support of those who have become severely affected is not receiving anywhere near the attention it requires.

As a charity we have been critical of the way in which many clinicians and researchers have failed to acknowledge the important clinical and causative overlaps between Long Covid and ME/CFS and the failure to realise that what we know about the cause and management of ME/CFS – especially the recommendations on convalescence, activity and energy management in the new NICE guideline on ME/CFS –  can also help people with Long Covid.

The transfer of experience and knowledge between clinicians and researchers involved in both conditions should be a two way process.  This is not happening and it can no longer be ignored.

Further information

The MEA guide to Long Covid and ME/CFS explains how we can help with Long Covid symptoms – debilitating fatigue and post-exertional malaise, cognitive dysfunction, unrefreshing sleep, orthostatic intolerance, PoTS etc – that also occur in ME/CFS

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