Large numbers of people, around one in 10, don’t make a normal recovery from coronavirus but continue to be ill with “long covid”. The illness is likely to have several different causes, probably including ME/CFS. Post-exertional malaise appears to be a common symptom. Long covid patients have quickly put the illness on the map, helping to launch a wave of research. ME/CFS researchers are joining in, seeing an opportunity to make a breakthrough with ME/CFS. The World Health Organisation has promised action on long covid and on the back of this its director-general said to the ME/CFS community, “we hear you”.
Over 30 million people have now tested positive for the coronavirus and sadly roughly 1 in a hundred of them died from it. Yet, as Professor Tim Spector pointed out in the Guardian, it is wrong to assume that ‘if you are not dead, you are fine’.
Spector leads the app-based Covid Symptom study https://covid.joinzoe.com/, which found that while most people recover from the virus within two weeks, one in 10 still has symptoms after three.
This is a massive infection of millions and millions of people. I think one has to be really concerned about the long-term consequences.Dr Avindra Nath, a neurovirologist at the US National Institutes of Health, in The Scientist.
Online groups have formed of people who call themselves “long-haulers”, those who haven’t made a good recovery from coronavirus. Many of them have been ill for months. Doctors now call their condition “long covid”, but what is it?
People with long covid experience a range of symptoms including fatigue, shortness of breath, fever, brain fog and trouble sleeping. Some of those symptoms will look familiar to people with ME/CFS.
Patients leading the way with the research
The best research to date on symptoms has come from the symptom experts — patients themselves. The Body Politic COVID-19 support group set up and published a groundbreaking and influential patient led symptom study.
The study found that long-haulers experienced a wide range of symptoms that frequently come and go. It also found that recovery rates were quite low, though the sample may not be representative and most people had only been ill for about six weeks.
A more recent study from another patient group, Survivor Corps, working with the Indiana University School of Medicine, also found many symptoms. As the red bars in the graph below shows, many of the most frequent long covid symptoms are also common in ME/CFS, an illness that often seems to start following a viral infection.
Long covid and ME/CFS
But what causes long covid, and do some long-haulers really have ME/CFS? We don’t know — yet.
According to medical experts, including Drs Avindra Nath, Anthony Komaroff and Charles Shepherd, long covid is likely to have several different causes. Some people will have damage to their heart, lungs and kidneys either caused directly by the virus or the immune response to it. Those who needed intensive care may be experiencing the long-term effects of their treatment. And some others may well be suffering from a post-viral syndrome.
ME/CFS after a serious infection would be no surprise. Researchers have shown that around one in ten people meets the criteria for ME/CFS six months after contracting glandular fever (caused by the Epstein-Barr virus). Studies have found a similar pattern with certain other viruses and with some bacteria, though only a limited number of pathogens have been properly studied.
Shepherd has said that many people with long covid after approaching the ME Association for advice on how to manage it, and some of them have already been diagnosed with post-covid ME/CFS.
Those with long covid and ME/CFS were perhaps the first to spot the similarities between the two illnesses and the two communities are connecting. Many people with ME/CFS are horrified that their illness might affect so many other people, while many people with long covid are expressing horror at what people with ME/CFS have had to go through.
Post-exertional malaise in long covid
The hallmark symptom of ME/CFS is post-exertional malaise (PEM), where even mild physical or mental exertion can cause a severe symptom flare lasting days.
Professor Paul Garner, an epidemiologist and a doctor, has blogged in the BMJ about his experience of long covid. He wrote, “it was as if I was being followed by phantom speed cameras. You don’t know the speed limit and you don’t know when the speed penalties will arrive. When they do they are harsh, stopping you in your tracks for days”. All of which sounds a lot like post-exertional malaise and the ME/CFS experience.
Dr David Putrino at the Mount Sinai Hospital in New York has seen many long covid patients. He told The Atlantic that more than 90% of them also have PEM, “we’re talking about walking up a flight of stairs and being out of commission for two days“.
A great opportunity to understand long covid, and possibly ME/CFS
Several ME/CFS researchers, including Nath and Dr Mady Hornig, have said that the epidemic of long covid provides the perfect opportunity to study that illness and potentially also ME/CFS.
First, large numbers of people are going through this at the same time making it possible to recruit and study large groups. Second, it’s possible to track an illness as it develops, a “prospective” approach that is particularly powerful.
Researchers can compare the biology of those who make a good recovery from long covid with the biology of those who do not. The approach could help pinpoint what causes long covid to develop and that could lead to treatments.
And if some people with long covid do indeed get ME/CFS, it could help to unlock the secrets of ME/CFS too.
Long Covid studies by ME/CFS researchers
1. Ron Davis
Open Medicine Foundation is funding a study led by Davis. It will be based at their four collaborative centres and will follow coronavirus patients who had been admitted to intensive care units. The aim is to find out if people do develop ME/CFS after coronavirus, and if so, why.
For two years, the teams will regularly collect biological samples and symptom data, as well as continuously monitoring health with wearable Fitbit-like devices. The scientists will then create a deep molecular profile from each of the biological samples.
Experts in analysis will mine all the resulting data to try to pinpoint what factors lead to ME/CFS.
2. Avindra Nath
The US National Institutes of Health (NIH) is funding many studies on coronavirus, including at least one that will explicitly look for post-Covid ME/CFS symptoms. (All NIH Covid-19 studies will be encouraged to collect data on ME/CFS symptoms.)
An NIH study will recruit around 1,000 people who are recovering or recovered from coronavirus. After an initial assessment of their symptoms and condition, certain participants will be referred on to relevant experts at the NIH’s own clinical research centre at Bethesda.
Dr Nath will run a separate study where post-coronavirus patients who developed neurological issues will be studied in great depth over two days. Any who are found to have ME/CFS symptoms will be evaluated d for his post-infectious ME/CFS study.
3. Leonard Jason
Dr Leonard Jason has adapted his existing study looking at the development of ME/CFS after glandular fever (mono) in college students. His group had already recruited and collected information and blood samples from 4,500 healthy students at the start of that study.
Their new study will use the information and sample to see if there are any baseline factors that affect the chances of people developing long covid after coronavirus, as well as collecting new samples and data.
Other researchers are repurposing their non-ME/CFS long-term studies to study coronavirus and long covid.
4. Following up ME/CFS patients with coronavirus
Both CureME, who run the UK ME/CFS biobank, and Solve ME/CFS will be tracking those who develop coronavirus. And both are looking to set up studies focused on long covid and the ME/CFS connection.
Dr Steven Deeks, an eminent HIV researcher, is leading the LIINC study of around 800 people who have had the coronavirus; some will have been hospitalised, some not. It aims to find out how frequently people develop long covid, why they get ill and why they do or do not recover. It will follow people over two years and focus on changes in the immune systems and different organs, including the lungs and heart.
Patient Led Research (formed from Body Politic members) has launched a new version of its survey. It aims to make the study as big and as representative as possible, and data will be collected on up to five occasions. As this is a survey and has already launched it could well be the first of the follow-up long covid studies to report results.
This is just a taste of what’s to come and I am pretty excited about the potential of this research, both for cracking long covid and perhaps ME/CFS as well. #MEAction runs an online tracker of long covid research.
The World Health Organisation takes an interest
People with long covid advocates have used media, lobbying and even produced research to rapidly put the illness on the map. Body Politic has been to the fore.
The UK group LongCovidSOS‘s brilliant “Message in a Bottle” video caught the eye of the World Health Organisation (WHO). The WHO then asked LongCovidSOS to set up a Zoom meeting between patient groups and the WHO.
That meeting was attended by WHO Director-General Dr Tedros Adhanom Ghebreyesus who promised action. He also reached out to the ME/CFS community:
Dr Ghebreyesus has asked for contact details from me (and Janet Defoe, for Ron Davis) and I am still hoping I will hear back from the WHO.
These are difficult times, especially for those with long covid. Yet patient advocacy has put their illness firmly on the map, helping to launch a wave of studies. These studies may well lead in future to answers and treatments for long covid, and perhaps for ME/CFS too.
My thanks to Beth Mazur for all her help and advice over identifying the most relevant studies.