Long COVID and MECFS – Victoria Bartle
What impact will Long Covid have on ME/CFS research, treatments and possible cures?
At the start of this pandemic some friends and I who have ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) were talking about how we thought that a large number of people who got Covid-19 could end up with ME/CFS and other long-term illnesses due to the potential lasting effects of the virus. This is an awful thing to be predicting, but an increase in numbers of patients with ongoing symptoms has already been seen following previous viral outbreaks.
After the SARS outbreak in 2003 in Hong Kong and Canada, Canadian researchers saw that almost half of everyone who had been infected with SARS suffered from ongoing, long term issues including pain and an overall deterioration of mental and physical health. There is also evidence of chronic symptoms developing in a large number of people after experiencing other viruses such as Ebola, Epstein Barr and even the 1918 Spanish Flu epidemic (which was thought to have left a fifth of patients with ongoing and even permanent fatigue.)
Once the term ‘long covid’ began to be used in the media I started to pay attention, but reading articles saying that this was an unseen consequence of the pandemic made me feel that ME/CFS still isn’t given legitimacy and is most certainly not commonly understood as a serious, debilitating condition which most often occurs after a viral infection. The patient doesn’t fully recover and is left with debilitating fatigue among a number of other symptoms including sensitivity to stimulus, widespread pain and cognitive fog making everyday tasks difficult, and, in some cases, rendering the sufferer bed-bound. This pretty much describes what long covid sufferers are experiencing.
I was diagnosed with ME/CFS at 14 years old. I was extremely fatigued and couldn’t get through what used to be a normal day. I missed lots of school, had to stop all of my hobbies, activities and sports and lost friends as I wasn’t able to engage with life. At the time ME/CFS wasn’t seen as a “real” condition and even today people struggle to get a diagnosis and legitimacy from friends, family and even medical professionals. Adding to already challenging circumstances we can end up in a seemingly never-ending search for a diagnosis, support, treatment and respect - which is unfortunately what long covid patients are now experiencing.
The fact that long covid is being portrayed in the media as a “real” condition that needs a treatment plan and that doctors and researchers are looking into how to support people struggling with it is a fantastic opportunity to raise the profile of chronic fatigue conditions. I’m thrilled that long covid is being treated with respect and acknowledgment, and that plans are being made to support and treat people with it. However, there already is a diagnosis for post viral fatigue syndrome - ME/CFS. This is not currently being highlighted in the media and it makes me concerned for the long term treatment and support for those with long covid once the pandemic is over and attention has moved on, as, currently, the support for ME/CFS patients is extremely limited and remains controversial to this day.
What are long covid and ME/CFS?
Firstly let's look at the terminology as people have very strong reactions to different diagnostic terms for what seems to me to be the same, or very similar conditions. I tend to use the term ME/CFS - as that is what my personal diagnosis has been since I first experienced the condition. However, lots of people prefer the term ME (Myalgic Encephalomyelitis) on its own, as the technical wording and the explanation of inflammation in the brain which has been found in ME/CFS patients lends some weight to describing how we feel on a daily basis. It can add a level of perceived legitimacy to an often-dismissed condition. Chronic Fatigue Syndrome is often dismissed by the general public, and also still by some medical professionals, as simply being tired, but in reality it's an extreme version of fatigue. It’s a feeling of weight, heaviness, crushing fatigue where the thought of having to move is just too much to manage. The brain fog means that we think slower than most people, struggle to find words, follow conversations and make decisions. Energy feels as if it has been sapped from the body and lifting things even as light as cutlery can become impossible. Extreme cases cause people to be completely bed bound, reliant on family and carers for everything, even unable to tolerate light, sound and touch. The terms Post Viral Fatigue (PVF) and Post Viral Fatigue Syndrome (PVFS) have also been used by medical professionals and the media when describing ME/CFS. Add long covid to the mix and you can see how it all becomes very confusing. So, for simplicity and ease of understanding I’m going to use the terms of ME/CFS and long covid for this article.
According to the Kings College London covid symptom research project, long covid is usually seen in patients who had covid but weren’t hospitalised due to the severity of their symptoms. After the usual two weeks of illness has passed, they are still feeling fatigued, with an estimated 1 in 20 covid patients still experiencing symptoms after eight weeks. Researchers are already trying to discover who is more at risk from developing long covid and what the symptoms are, and they have found that symptoms seem to fall into two groups. One group experiences breathing difficulties, a cough and continuing fatigue, with the second group experiencing more systemic problems including brain, heart and gut problems. Both groups have also been seen to experience heart palpitations, brain fog and numbness, with symptoms sometimes disappearing then reappearing in a seeming relapse of the condition. This all sounds very familiar to those of us who have ME/CFS and have also been diagnosed with Postural Tachycardia Syndrome (POTS). POTS is a common co-morbidity which causes an increased heart rate due to the autonomic nervous system not working as it should do, with patients often unable to regulate their heart rate and other automatic functions in a ‘normal’ way.
Stigma surrounding ME/CFS
The negative media portrayal of ME/CFS started with the prevalence of the term “yuppy flu” in the 1980’s. It continues to this day with the casual dismissal of many invisible illness sufferers, looking derogatorily at benefit claimants and the ableist stereotype of us as ‘fakers’. This makes it very difficult to get a diagnosis as well as find support, treatment and consultants who will help us to manage our symptoms. When you have a condition with no definitive diagnostic test, no cure, few treatments to help with daily challenges from symptoms and a limited number of medical professionals who specialise in chronic fatigue, we are at a disadvantage from the outset. Then you add in limited funding, awareness and minimum research and the future isn’t looking too bright. Hopefully, with long covid being taken seriously as a post viral fatigue condition, there will be a rise in awareness, legitimacy, funding, interest from doctors and other medical professionals to specialise in and develop research projects. There is still so much to learn about the condition such as how it develops, why the impact varies so much between patients, how we can better manage our symptoms to improve quality of life, what drug therapies could help, and, ultimately, can we find a cure?
The negative media portrayal of ME/CFS was bolstered in 2011 with the publication of the PACE research trial. This was a highly publicised and ultimately disproven trial, which had been funded by the DWP, into treating ME/CFS with GET (Graded Exercise Therapy) and CBT (Cognitive Behavioural Therapy). Due to the recommendations of this study being adopted by the National Institute for Clinical Excellence (NICE), who provide guidelines for UK health professionals to follow, it has been the way in which all medical professionals have approached patients with ME/CFS, and determined to be the best way to treat us. The direction from the study, and subsequently the NICE guidelines is that ME/CFS is a mental health condition and people with it need to be treated by mental health specialists and pushed to increase their activities in order to regain muscle, strength and stamina leading to, theoretically, an improvement in the condition. This led to lots of ME/CFS patients being forced into activity which actually made their conditions worse due to post exertion malaise, which is a diagnosing symptom of ME/CFS. This spawned a backlash where the trial was ultimately exposed to be badly executed and incorrect in its findings. The historical issues surrounding the terminology, diagnosis and treatments for ME/CFS have all managed to delay the legitimacy of the condition within the medical profession, as well as with the general public. The NICE guidelines have still not been updated to acknowledge the danger of using GET as a therapy for patients with ME/CFS - although a draft update was published in November 2020, the completed guidelines not due for completion until April 2021. This means that the government and the NHS are, to this day, supporting the idea that ME/CFS is a mental heath condition. Does this mean that long covid sufferers will also continue to come up against this prejudice towards diagnosing a physical chronic fatigue condition, especially if they haven’t had a positive Covid-19 test result as proof of it starting with a viral infection?
How long covid can help reduce the stigma?
Paul Garner, a professor at the Liverpool School of Tropical Medicine, wrote of his experiences of long covid (one of the first people to coin the term) in the British Medical Journal in May 2020. He stated that it “is not some ‘post viral fatigue syndrome’ but the disease (Covid-19) itself”. Here he was deliberately separating long covid and his personal experiences from ME/CFS. This makes me wonder if this statement is coming from a perception of prejudice around ME/CFS? Did he want to distance himself and other sufferers of long covid from being linked to those of us with ME/CFS? Knowing that people with ME/CFS are often disbelieved and classified as hysterical or anxious by medical professionals seems to have pushed him further away from the thought that what he has could in fact be ME/CFS and he is therefore keen to define his condition as something very different and ultimately real.
His initial dismissive attitude towards an ME/CFS link or diagnosis worried me as it raises concerns that it could lead to further disbelief, stigma and problems for those of us diagnosed with it, especially as he is a doctor. In the past, some people have taken to calling their ME/CFS ‘long mono’, ‘long glandular fever’ or ‘long Lyme disease’ in order to establish it as a separate condition that has the potential to be taken as seriously as long covid seems to be being taken today. The driver behind this is the need to access treatment, support and benefits. The comments below his blog support my opinion that he could be diagnosed with ME/CFS, as other patients acknowledge that long covid seems very similar to what we experience, and that we are often dismissed by the medical profession due to years of negative attitudes surrounding the condition.
However, in further articles which he published in June and then six months later in Sept 2020 he describes how he is now much more open to the diagnosis of ME/CFS. He now talks of speaking to ME/CFS specialist doctors, practicing pacing to manage his experiences of post exertion malaise and becoming more aware of how patients with ME/CFS have been treated by the medical profession. He also says that this needs to change for the millions of us currently suffering, which is greatly heartening to me. His attitude of accepting the condition, his limitations and the potential payback from activity is exactly what I have been taught to do through Acceptance and Commitment Therapy and this has really helped me to manage my life and continue to have a sense of wellbeing around this debilitating condition.
Having a large number of doctors and other medical professionals developing long covid (according to some numbers gained from online support groups) could be the factor which drives legitimacy and potential awareness, funding and research into the condition. The British Medical Association is keen to classify it as an occupational health condition, as most of the healthcare professionals who have had covid-19 will have contracted it in the workplace, thus adding further legitimacy to the condition. The article goes on to say that the doctors they have spoken to have gained insight from the management methods of ME/CFS patients, focusing on pacing and not trying to push through the fatigue and other symptoms, although they continue to imply that long covid is a separate condition to ME/CFS. However, the articles that I have read from the US seem to lean towards the assumption that covid long haulers will eventually be diagnosed with ME/CFS if their symptoms continue for the 6 months required to diagnose ME/CFS in the US.
This is what I am eager and excited to read as it at least makes me feel as if ME/CFS is at least seen as a specific condition in the US, with links being made directly by health professionals and researchers. This will then drive awareness through the media that long covid can and will be classified as ME/CFS if symptoms are still being experienced after six months. In the UK the NICE (National Institute for Clinical Excellence) guidelines on long Covid have already been published for medical professionals. These state that patients must still have symptoms at 12 weeks after the initial virus in order to be diagnosed. However their guidelines for ME/CFS has a minimum duration of four months before a diagnosis can be made, and there is no formal mention in the UK, as yet, of a link between, progression to or similarities of long covid and ME/CFS.
The good news for those of us in the UK is that the government has already provided £10 million of funding to create almost 70 long covid specialist treatment centres across the country which started to open in Dec 2020. While this is great news, my concern is who is going to staff these centres and what are they going to do with the patients? There is very little known about the condition as yet, and in terms of ME/CFS there is no treatment, no cure and the specialists in the few Chronic Fatigue clinics and treatment centres across the country, who potentially have the skills and knowledge to create treatment plans for people with long covid chronic fatigue issues, are few in numbers. They barely have enough time and resources to support the huge numbers of people who currently have ME/CFS never mind long covid. The clinic that I go to only has allocation for patients one morning a week and they have just one consultant, a physiotherapist, an occupational therapist and a psychologist and they all have had and continue to have very long waiting lists since its inception in 2013. Plus, the current NICE guidelines still support Graded Exercise Therapy as a treatment, which as mentioned, has the potential to cause harm. By talking about the links to ME/CFS and the damage caused by the PACE trial hopefully this won’t happen, and long covid patients will be treated with respect, care and support to help manage their condition.
What will the future look like?
There is a lot of research currently being done into the origins, potential bio markers, genetics and immune responses of people with ME/CFS but unfortunately our legitimacy had been damaged by historical media bias, ineffective and dangerous research studies as well as it being an invisible illness with no definitive diagnostic method. Plus, there simply hasn’t been enough funding to do the extensive research that is needed. My hope is that the silver lining in the horrific reality of the large numbers of people developing long covid is that it will raise awareness of the condition and push governments, funding bodies and researchers towards finding diagnostics, treatments, community support and ultimately a cure.
The repercussions of this research could be utilised to improve the lives of huge numbers of people across the world as chronic fatigue is a major symptom of many other conditions such as Fibromyalgia, a number of autoimmune diseases as well as Parkinson’s and Dementia. All patients experiencing these illnesses could benefit greatly from more knowledge and understanding of fatigue and how best to manage, treat and potentially cure it.
In February this year the National Institute of Health Research (NIHR) reported that £18.5 million has been allocated for long covid research studies focusing on the causes, effects and how to improve the quality of life of those experiencing the condition, with several projects already underway to try and provide some answers. However, in an interview with the BBC’s Science Focus magazine, Professor Altman of Imperial College London said that he is extremely concerned about the future impact of long covid on the NHS with it potentially having the same permanent impact as that of arthritis on NHS resources, which in 2018 was estimated to be £10.2 billion (and is expected to rise to £118.6 billion by 2028). This is an enormous amount of money and provokes the question of can we afford not to invest in long covid research, treatment and, importantly, training the medical professionals to deliver them?
One point that the media in the UK and the US have both been making is that the published Covid-19 statistics need to include the numbers of people who are continuing to experience symptoms after three, six and nine months - not just the infection and death rates. This is to make the public more aware of the long term impacts of the virus, as well as the potential for permanent disability following even a mild case of covid-19. This also has the potential to increase compliance with restrictions and vaccine uptake if people are aware that they could be affected in more ways than simply having a two week virus which is how it has mainly been portrayed since the start of the pandemic.
The ME Association has created some content on its website about the long term effects of Covid-19, how and when it can be classified as ME/CFS and the methods that are recommended to help with the management and possible improvement of the condition which is really helpful. The advice around convalescence, pacing, managing your mental health and overall wellbeing is exactly what I’ve been advised to do from the professionals at the Fatigue Clinic that I attend. There is currently no cure, drug treatment or magic wand to improve or manage the symptoms of this debilitating condition, so patients simply have to learn to rest, relax as best as they can and, if it persists, practice acceptance, patience and self care. Taking on the mentality that recovering from this disease is a battle that you need to push through and ultimately win just makes the symptoms of fatigue worse. Don’t try to fight it. Accept that your body needs rest and go with it. Look after yourself, eat well, do things that you enjoy, get some exercise if you can manage it, but do not over do things. Learn about pacing and manage your energy carefully to ensure that you are able to have a good quality of life which is extremely important in order to maintain positive mental health. Get support from friends and family, and if they’re struggling to support you, reach out to other people in similar situations. There are so many online support groups that you should be able to find one that suits you as talking to people who understand really does help - they’ll also be able to advise on things that have helped them and how to adapt and manage the day to day aspects of living with a disability.
Estimates by US researchers have said that there could be 10 million people worldwide affected by ME/CFS due to Covid-19 after this pandemic is over.However, if you add it to the current estimate of 17 million people having ME/CFS already, this takes the figure to 27 million people which is a staggering number.
We must not simply move on, forget and leave these people to add to the numbers of sufferers of chronic fatigue conditions who are often unable to work, require ongoing care and medical interventions. The cost to society will be much more obvious than it has been previously with the potential numbers of people who will be affected by the pandemic becoming part of the disabled community over a short period of time. There won’t just be #MillionsMissing as the ME Action group has long been advocating, there could be missing from society as they are kept from their lives through continuing fatigue and the many other debilitating symptoms that are part of having ME/CFS.
I’m hopeful that the continuing media attention on long covid sufferers, investments in treatment centres and research will provide some support, reassurance, legitimacy and ultimately treatments and cures that can be utilised by patients living with any condition which causes chronic fatigue.