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Some advice for ‘long Covid’ sufferers, from the chronic fatigue community

Understanding the connection between chronic fatigue syndrome and ‘long Covid’ might be helpful in treating symptoms that doctors will find all too easy to dismiss.

When people began to report signs of “long Covid”, characterised by a lack of full recovery from the virus and debilitating fatigue, I recognised their stories. Not the Covid itself, but the aftermath.

Some people who have experienced Covid-19 report symptoms and fatigue that last for weeks or months after they no longer test positive for the virus. While some persistent symptoms are linked to Covid, including the cough and chest pain, others overlap with the 2015 diagnostic categories for ME/CFS, or myalgic ecephalamyelitis/chronic fatigue syndrome, a condition I live with. These include a substantial reduction in the ability to participate in pre-virus activities, profound fatigue that lasts for more than six months and is not relieved by rest, post-exertional malaise, unrefreshing sleep, orthostatic intolerance and/or cognitive impairment. Other symptoms and co-morbidities usually exist.

Friends who also have ME/CFS and I pondered whether those experiencing long-Covid-19 would be taken seriously by the medical community, or if they too will eventually be forgotten.

Long-Covid has ignited more scientific inquiry into the mechanisms that underpin post-viral illness and ME/CFS. In early December 2020, news broke that dedicated scientists, emeritus professor Warren Tate and Dr Aniruddha Chatterjee at Otago University, have evidence that ME/CFS is not psychosomatic. In other words, they have proven that it exists, and that we exist. The two four-year molecular studies on a small group of patients using the principles of personalised medicine have made headlines across the world. They discovered changes in physiological and biochemical pathways and systems.

This is huge.

This may mean targeted treatments for people with ME/CFS, and Covid-19 patients who unfortunately experience post-viral illnesses or eventually ME/CFS. As someone who has lived with ME/CFS for 24 years and researched the experiences of those with stigmatised conditions, I have hope that doctors will not dismiss those patients with post-viral illnesses who seek their help. I have hope that those with “long Covid” will not be told they are psychosomatic if symptoms do not clear up.

The now-debunked but sadly pervasive treatment protocol for those with ME/CFS has been graded exercise therapy (GET). Twenty years ago, when I was 14 years old (and many times since), a doctor prescribed GET for me. Movement and exercise to be done in small increments and built upon slowly was à la mode within the medicine community. If you stay for long enough in a doctor’s office, the term “psychosomatic” is likely to be thrown at you too. Graded exercise only worsened my condition, causing physical crash after crash as I pushed myself again and again.

One outcome of the failed graded exercise therapeutic approach to treatment has been the question: what helps, especially in the first months, to relieve post-viral fatigue symptoms? The truth is that sometimes, nothing helps. Some people do experience a worsening of their health, while others an improvement.

What may help are these two things: Firstly, not pushing your body beyond its current capacity, and resting as much as possible at the onset of post-viral symptoms, will lead to a much better prognosis for recovery. Research shows that those who do not fight against what is happening to their body have more chance of improving quicker than those who ignore it.

Secondly, pacing is central to not crashing (identified as an exacerbation of symptoms) and can help to lessen the effects of post-exertional malaise. I am not a natural pacer, not many of us in the community are. A common response to a “good day” or a bit of energy is to seize the moment – doing the most that you can, accepting that the fallout may mean worsening pain levels, indescribable fatigue, and cognitive impairment. However, the principles of pacing, of not overdoing things or pushing your limits, of resting in between activities, is invaluable, if sometimes hard to achieve.

At the same time, any diagnosis is a privilege. It often takes years to be diagnosed (correctly) with ME/CFS, and many people do not have appropriate access to medical care, a supportive workplace or family, safe and healthy housing, and enough income to pay for treatments that may alleviate suffering. This will not change with new research that challenges the myth of ME/CFS as psychosomatic. The systemic inequalities and discrimination of those with contested or invisible illnesses and disabilities (including those with mental health conditions) require a more radical shift of how we treat our most vulnerable groups. This includes understanding that everyone, regardless of their abilities, is inherently valuable and worthy of better care, less stigma, greater accessibility of work-place cultures, healthier homes, and community support. It means governments taking better responsibility for providing better care.

As Covid-19 vaccinations begin in other countries, and with Jacinda Ardern announcing that New Zealanders will receive 15 million courses of the vaccine this year, I am conscious that for many people the virus, and the events of 2020, will soon be a thing of the past. But for those who are experiencing long Covid, this is potentially the beginning of an arduous road ahead.

Please know that some of us – those who have had viruses that led to devastating and life-changing impacts – we see you.




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