The Conversation blog post: Coronavirus: why are some people experiencing long-term fatigue?, by Prof Frances Williams, 16 July 2020
People who have been seriously unwell and treated on intensive care units can expect to take some months to recover fully, regardless of their ailment. However, with COVID-19, evidence is mounting that some people who have had relatively mild symptoms at home may also have a prolonged illness. Overwhelming fatigue, palpitations, muscle aches, pins and needles and many more symptoms are being reported as after-effects of the virus. Around 10% of the 3.9 million people contributing to the COVID Symptom Study app have effects lasting more than four weeks.
Chronic fatigue – classified as fatigue lasting more than six weeks – is recognised in many different clinical settings, from cancer treatment to inflammatory arthritis. It can be disabling. If 1% of the 290,000 or so people who have had COVID-19 in the UK remain under the weather at three months, this will mean thousands of people are unable to return to work. They will probably have complex needs that the NHS is ill-prepared to address at present.
COVID-19 is not the only cause of chronic fatigue. Prolonged fatigue is well recognised after other viral infections such as the Epstein-Barr virus, which causes infectious mononucleosis (also known as glandular fever). Post-viral fatigue was also seen in a quarter of those infected with the original Sars virus in Hong Kong in 2003.
When it comes to treating chronic fatigue, the emphasis previously has been on effective treatment of the underlying disease, in the belief that this would diminish the fatigue. However, for most viral infections there is no specific treatment, and because COVID-19 is so new, we don’t yet know how to manage post-COVID fatigue.
What might be causing post-COVID fatigue?
Although we know that lasting fatigue can sometimes follow other viral infections, detailed mechanistic insight is, for the most part, lacking. An ongoing viral infection in lung, brain, fat or other tissue may be one mechanism. A prolonged and inappropriate immune response after the infection has been cleared might be another.
However, a previous study has given us some insight. When a chemical called interferon-alpha was given to people as a treatment for hepatitis C, it generated a flu-like illness in many patients and post-viral fatigue in a few. Researchers have studied this “artificial infection response” as a model of chronic fatigue. They found that baseline levels of two molecules in the body that promote inflammation – interleukin-6 and interleukin-10 – predicted people’s subsequent development of chronic fatigue.
Of particular interest, these same pro-inflammatory molecules are seen in the “cytokine storm” of severely ill COVID-19 patients. This suggests there might be a pattern of immune system activation during the viral infection that is relevant to ongoing symptoms. Further support for interleukin-6 playing some sort of role comes from the successful use of tocilizumab – a treatment that lessens the impact of interleukin-6 and reduces inflammation – to treat severe COVID-19.
Read the full article for info about Covid-19 research at Kings College, London and the need to pace when managing chronic fatigue. Prof Williams recommends Dr Muirhead’s ME/CFS course for clinicians at StudyPRN.
Cognitive dysfunction has been demonstrated during head-up tilt testing (HUT) in those with ME/CFS: worse scores on cognitive tests occur with increasing tilt angles and increasing complexity of the cognitive challenge. The aim of our study was to determine whether cognitive impairment persists after completion of HUT.
The current problem regarding Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is the large proportion of doctors that are either not trained or refuse to recognize ME/CFS as a genuine clinical entity, and as a result do not diagnose it. An additional problem is that most of the clinical and research studies currently available on ME are focused on patients who are ambulant and able to attend clinics and there is very limited data on patients who are very severe (housebound or bedbound), despite the fact that they constitute an estimated 25% of all ME/CFS cases.
Illness severity often precludes attendance at healthcare facilities, and if an individual is well enough to be able to attend an appointment, the presentation will not be typical; by definition, patients who are severely affected are home-bound and often confined to bed.
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Background: Today, 24% of college and university students are affected by a chronic health condition or disability. Existing support programs, including disability services, within colleges and universities are often unaccustomed to addressing the fluctuating and unpredictable changes in health and functioning faced by students with severe chronic illnesses.
We studied 82 female patients who had undergone a 2-day CPET protocol. Measures of oxygen consumption (VO2), heart rate (HR) and workload both at peak exercise and at the 
Since the end of the 20th century, the Myalgic Encephalomyelitis / Chronic Fatigue Syndrome community tried to create medical credibility and patient visibility for a chronic, controversial disease with many symptoms, no cure, and no diagnostic test. Not taught in medical schools, it relied on television to make itself visible fighting stigma and prejudice, challenging the political system and the philosophical approach we use to think about illness itself, having patients re-appropriate the discourse. Keeping a cultural approach to health communication as a phenomenon that maintains, produces, and transforms health and illnesses, I analyze news, fictional and talk-show programs.
In doing so I will mainly focus on programs that aired at the turn of the century. This is not just for historical reasons, but for two other strong motives: if it’s true that new spaces, like the Internet and social media, opened up and gained strength in the meantime regular TV still maintains a broader and less topic-focused approach that can reach outside the intended foreseeable target audience; also, with regards to ME/CFS, some of the main communication issues are now still the same as in the beginning, and it is worth looking at the roots of how we talked about it to draw inspiration on what worked and what should be done differently.
Terri asked Dr. Anthony Fauci (Director of the National Institute of Allergy and Infectious Diseases and member of the White House Coronavirus Task Force), what NIH is doing to address Covid-19 “long-haulers” risk of developing ME and CFS and pointed out that there has been very little funding invested in research into ME and few medical providers know how to take care of people with ME. There are still no FDA approved drugs to treat ME.
NICE is aware of concerns about graded exercise therapy (GET) for people who are recovering from COVID-19. NICE’s guideline on ME/CFS (CG53) was published in 2007, many years before the current pandemic and it should not be assumed that the recommendations apply to people with fatigue following COVID19.
