Video: Long Covid, PVFS, & ME/CFS with leading experts including Dr Charles Shepherd

May 21, 2021

This is an excellent new video, and we commend Broken Battery on his timely production.

It features expert commentary from Dr Charles Shepherd (Hon. Medical Adviser to the ME Association), Dr Nigel Speight (Hon. Paediatric Adviser to the ME Association), Dr Nina Muirhead (Dermatology Surgeon and ME/CFS advocate), Dr Nicola Clague-Baker (Physios 4 ME) who is embarking on a research project for the ME Association, and others from the UK.

It also features comments from American experts on ME/CFS, Covid-19 and Long Covid, together with related extracts from news bulletins.

Synopsis and references

Nearly 1 in 7 people with COVID-19 have symptoms lasting 3 months or longer. Over a million people are thought to have Long COVID in the UK [1]. These people are often young, previously healthy, and had relatively mild symptoms at onset [2]. Long COVID covers a large and diverse group of patients in terms of clinical presentation, severity, fluctuation, and causal factors [3]. Research suggests Long COVID may be up to four different syndromes which some patients might be experiencing simultaneously [4].

“If you look anecdotally there is no question that there are a considerable number of individuals who have a post-viral syndrome” [5]. Research that monitored people over time found that many people with Post Viral Fatigue Syndrome recover within a year of the initial infection [6].

In a small minority of cases patients can go on to develop ME/CFS, a complex multi system disease often triggered by a virus or infection [7]. Preliminary research into Long COVID suggests there are many overlaps with ME/CFS [8]. A significant number of people with Long COVID could meet the diagnostic criteria for ME/CFS [9].

MEA Booklet on Long Covid & ME/CFS

The hallmark symptom of ME/CFS is that even minimal exertion can cause a flare in symptoms and a reduction in physical capability (a crash) that can last for days, weeks or even months.

In a large survey of Long COVID patients a high proportion reported that they experience Post Exertional Malaise and suffered relapses after activity [10].

It is vital that researchers and clinicians who treat and study Long COVID patients understand ME/CFS diagnostic criteria and management advice [11].

For over 20 years ME/CFS patients have been recommended Graded Exercise Therapy a controversial treatment where physical activity is gradually increased over time.

Patient surveys consistently report that Graded Exercise Therapy makes over 50% of patients with ME/CFS worse. Some never recover [12]. After an extensive 3 year review, NICE dropped Graded Exercise Therapy from their draft guidelines for ME/CFS because of improved standards for evidence and concerns about harm [13].

A growing number of patients with Long COVID are experiencing adverse effects from exercise therapy [14]. Physiotherapy that might work for one group of Long COVID patients may end up worsening another. The challenge is to identify those who experience Post Exertional Malaise and avoid worsening the condition [15].

To help manage their energy and avoid Post Exertional Maliase patients should practice Symptom Contingent Pacing because activities are driven by symptoms and are not fixed or gradually increased [16]. Both physical and mental activities should be carried out in small manageable chunks with a period of rest or relaxation in between. Approaches that utilize wearable heart rate monitors may also be effective [16].

[7] Physios for ME – PVF, PVFS and ME YouTube Video (8 mins 50)

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