By Simone Eyssens, Research Director

In the midst of the COVID-19 pandemic which has wreaked havoc around the world, ME/CFS has come into the spotlight. In a remarkable moment in July, Dr Anthony Fauci, head of the US National Institute of Allergy and Infectious Diseases and one of the leading figures in the US fight against the virus, drew a clear link between so-called long COVID-19 and ME/CFS.  

“It’s extraordinary how many people have a post-viral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome,” Dr Fauci said in an interview with Medscape. “They just don’t get back to normal energy or a normal feeling of good health.”

Strikingly similar

More than six months into the global coronavirus pandemic a disturbing picture is emerging of the long-term impact of the virus, with a growing group of patients continuing to have debilitating symptoms months after their initial infection. These patients have dubbed themselves COVID-19 long-haulers.

Like people with ME/CFS, COVID-19 long-haulers often experience a wide range of symptoms. The two conditions share some common symptoms such as fatigue, pain, gastrointestinal disturbance and neurological symptoms. And at least some COVID-19 patients also appear to experience exercise intolerance, which is a key feature of ME/CFS.

"Many COVID-19 long-haulers describe being told by doctors that their symptoms are all in their head."

A disturbing parallel with ME/CFS is that, despite having been infected with the SARS-CoV-2 virus (the virus which causes the COVID-19 illness), many COVID-19 long-haulers describe being told by doctors that their symptoms are all in their head, or due to psychological conditions like anxiety or depression.  

Given that many cases of ME/CFS develop after an infection, there has always been a possibility that some COVID-19 patients would go onto develop ME/CFS. New Zealand ME/CFS expert, Dr Ros Vallings, told Emerge, “The immune system responds in the normal way to the initial viral infection but abnormalities persist in some patients. It seems highly likely that there will be a cohort of patients following a serious viral illness such as COVID-19 who will be diagnosed with ongoing ME/CFS.”

Despite the similarities, not all COVID-19 long-haulers will have ME/CFS. They may have persistent fatigue which will later resolve or other post-viral complications, like heart or lung damage, which are very different to ME/CFS. Australian research found that six months after infection with a virus like Epstein Barr virus or Ross River fever, as many as 11 per cent of patients met the diagnostic criteria for ME/CFS.

It’s too early to tell how many COVID-19 patients will later develop ME/CFS. Dr Alain Moreau (University of Montreal) says, “The question is not ‘will this happen’ but how many will suffer”.

With more than 50 million people worldwide having contracted COVID-19 so far, if only a small percentage of those develop ME/CFS, it would mean many chronically unwell people coming out of the pandemic. And the prospect of this has brought the world’s attention to our door.

Media spotlight

The global media has been quick to pick up the emerging story of some patients surviving but failing to recover from COVID-19. In contrast to much of the media coverage of ME/CFS in the past, the coverage of COVID-19 long-haulers has been sympathetic, casting their condition as a devastating consequence of the SARS-CoV-2 virus. Having been triggered by a widely publicised viral pandemic has helped COVID-19 long-haulers’ symptoms be perceived as biological and “real”. 

These articles often also mention ME/CFS as a possible consequence of COVID-19. With articles appearing in outlets like The Washington Post, The Atlantic, and The Scientist, one of the unexpected upsides of this media coverage is that it has further legitimised ME/CFS as articles have assumed that, like long COVID-19, ME/CFS is a biological illness. In drawing parallels between the two conditions, some articles have also highlighted the mistreatment and disbelief which ME/CFS patients, like COVID-19 long-haulers, have faced, shining a light on the decades-long plight of the ME/CFS community.

Research studies

COVID-19 has drawn the interest of several ME/CFS research groups because it offers an opportunity to study post-viral illness in a large group of people, to better understand the cellular mechanisms which facilitate recovery from a viral infection, and those which impede or prevent it. Understanding these mechanisms may help shed light on why some people develop ME/CFS and others don’t. And understanding how some COVID-19 patients with a delayed recovery do eventually recover could provide some insight into how recovery could be stimulated in people with ME/CFS.

“Scientifically I think the most important thing to look at is why they convert to ME/CFS.

What’s different about them? That could give us a valuable clue."

Stanford University’s Professor Ron Davis says, Scientifically I think the most important thing to look at is . . . why they convert to ME/CFS. What’s different about them? That could be extremely valuable, that could give us a valuable clue to . . . how to treat it.

Associate Professor Mady Hornig, from Columbia University, agrees that studying COVID-19 patients could potentially lead to new treatment ideas for ME/CFS. “One of the interesting things we’ve seen so far is that some COVID-19 patients who initially seem to be on the path to developing ME/CFS actually start to feel better after four or five months,” she says. “We think that looking closely at these people and comparing them to others who eventually do get diagnosed with ME/CFS could yield valuable insights… That could be the kind of discovery that opens up new possibilities for treatment.”

Some of the ME/CFS researchers studying COVID-19 include:  

  • The Open Medicine Foundation’s Collaborative Research Centers are studying COVID-19 patients to see who goes on to develop ME/CFS, to try to understand what triggers ME/CFS in those patients
  • Dr Karl Morten (Oxford University) is undertaking metabolomics of COVID-19 patients’ blood
  • The UK’s Cure ME Biobank is participating in a large UK COVID-19 study (with an estimated 10,000 participants) and will also survey the ME/CFS biobank participants’ health, to study the impact of COVID-19 on people with ME/CFS compared with healthy people
  • Associate Professor Mady Hornig (Columbia University) is following a group of African American, Hispanic and Native American COVID-19 patients with neurological symptoms, like a loss of smell, to see which develop ME/CFS

Solve ME/CFS Initiative (SMCI) has been lobbying US Congress to include ME/CFS research in COVID-19 spending. The Understanding COVID-19 Subsets and ME/CFS Act has been drafted, asking for US $60 million for post-viral ME/CFS research over the next four years, and advocates are lobbying members of Congress to support the bill.

SMCI CEO Oved Amitay says, “With so many unknowns still surrounding the long-term effects of COVID-19, researching any potential patterns that may be surfacing is crucial. Given the emerging relationship between COVID-19 and post-viral fatiguing diseases, especially ME/CFS, the time to invest in researching potential links is now.”

Opportunities for influence

The pandemic has also presented the ME/CFS community with advocacy opportunities, as governments and medical bodies start to recognise the public health implications of long COVID-19.

The World Health Organization’s Director General, Dr Tedros Adhanom Ghebreyesus, has met with COVID-19 patient groups to discuss their needs and concerns and has now also offered to speak with the ME/CFS community, something which has never happened before. While it’s not yet clear how this will develop, it represents an exciting opportunity to increase our visibility within this powerful organisation.

In the UK, which has had many COVID-19 cases, GPs were drawing on the UK’s ME/CFS clinical guidelines to recommend graded exercise therapy (GET) for COVID-19 patients. Following advocacy from the UK’s ME Association’s Dr Charles Shepherd and other ME/CFS experts raising concern about the risks of GET to COVID-19 patients, the UK’s National Institute for Health and Care Excellence released a statement indicating that the recommendation for GET was for mild-moderate ME/CFS patients only, and that “it should not be assumed that the recommendations apply to people with fatigue following COVID19”.

While this doesn’t help ME/CFS patients who are still subject to these recommendations, it may help prevent post-COVID-19 patients from experiencing harm. NICE also acknowledged that the ME/CFS guidelines are currently being updated and that recommendations for GET for ME/CFS may change.

The Physios for ME group have also ensured that the risk to ME/CFS patients from increased activity and “progressive physiotherapy” have been included in World Physiotherapy’s (the global physiotherapy body) guide to COVID-19 for physiotherapists.

With more than 50 million people having contracted the virus and more than one million dead, there is no doubt that the COVID-19 pandemic has been devastating. At the same time, we are witnessing one of the brightest spotlights ever shone on the long-neglected plight of people with ME/CFS. Sadly, it has taken a pandemic to make it happen.

This article was first published in the Emerge journal, Spring 2020 edition