Fibromyalgia, chronic fatigue syndrome, and Long COVID: How patients push medical communities to recognise and treat their diseases
Though the long-term effects of the Sars-CoV-2 virus on human health has not yet been studied, some tendencies begin to manifest in the form of the so-called “Long COVID”. More and more patients have reported persistent symptoms for weeks and months after their recovery. COVID “long-haulers” have been finding one another on social networks, creating support and activist groups, and calling both medical and government officials to pay special attention to the issue. Though “Long COVID” has not been recognised as a medical condition yet, previous experience of HIV activists and chronic fatigue syndrome patients boosts long-haulers’ hopes.
Patient experience has always been essential to disease research and treatment development. We witness a long history of patients challenging or refining knowledge acquired by formal clinical research communities. Mental health patients have pushed medical professionals to improve diagnostic principles and suggested new ways of conceptualising distress and recovery. AIDS activists have changed approaches to biomedical research and helped make treatment more accessible. People with chronic diseases like cancer or diabetes have raised patient awareness and created channels to share their ways of living.
Who are the COVID-19 long-haulers?
Tens of thousands of people all around the world consider themselves COVID-19 long-haulers. These are patients who experienced symptoms of the disease weeks and months after they received negative COVID-19 tests. Among the most commonly reported post-COVID symptoms are fatigue, breathlessness, memory troubles, heart and lung issues, and gastrointestinal problems.
Davis, an artist and researcher from New York City, USA, has experienced hand tremors and memory issues. Alison Cairess, a 57-year old from Bradford, UK, has been struggling with the post-COVID feeling of sickness and fatigue, she does not feel strong enough and has to rest most of the time.
The movement’s name was coined by an American woman, who started a “Long-haul COVID fighters” support group. It was inspired by a trucker hat she wore when she tested positive for coronavirus. The “Long COVID” term originated with a hashtag (#LongCovid), created by an Italian from Lombardy, a region hard-hit by the pandemic. Similar names appeared in German (#MitCoronaLeben), Spanish (#CovidPersistente), and other languages.
Long-haulers’ refuge
Chimére Smith, a 38-year-old middle school teacher from Baltimore, USA, fell to COVID-19 in March 2020. Weeks after recovering, Chimére was still dealing with some of the symptoms. It was then she came across a Slack COVID-19 support group called Body Politic. Reading the group’s posts made her body shake — not because patient stories were so shocking, but because she knew exactly how those patients felt.
This means their medical insurance does not cover the additional medical tests or treatment long-haulers need. Furthermore, as regular medical tests do not show any deviations in long-haulers’ health, many healthcare professionals believe Long COVID is purely psychological, rather than a physiological disorder. As a result, physicians refer long-hauler patients to psychiatrists, who try to treat their condition with sedatives and antidepressants. Though those medications may positively impact long-haulers’ mental health, they fail to cope with physical malaise.
Failing to get help and support from specialised organisations, long-haulers like Chimére seek encouragement online. They create online support groups, share their stories, and even develop a specific vocabulary to describe their experiences. Though most of those people have never seen each other in real life brain fogs, midday naps, and breathlessness have created a strong sense of unity.
Fiona Lowenstein, the Body Politic group founder, says she communicates much more with her long-hauler friends than her “before COVID-19” friends. In her article for Teen Vogue, 26-year-old Fiona raises the issue of COVID-19 patients losing friends because they are temporarily unable to participate in social activities like outdoor sports. Lowenstein started Body Politic after falling ill with coronavirus.
The Long COVID movement has existed for less than a year, but their efforts already seem to be bearing fruit. Support groups gather together large numbers of people who are ready to work hard to draw public attention. Body Politic, for example, has over 18,000 active members from more than 30 countries. Members of the group have organised some basic research projects and launched awareness campaigns to advocate recognising the post-COVID syndrome and the provision of COVID-19 related medical care without a positive test.
Many long-haulers, who went down with COVID-19 at the beginning of the pandemic, suffered the consequences of inaccurate testing. They were not admitted to hospitals and did not receive proper treatment because of negative COVID-19 tests or overcrowded hospitals, despite having characteristic symptoms and being very sick.
Heather-Elizabeth Brown, a 36-year-old corporate trainer from Detroit, USA, went down with fever in early April. Brown wasn’t hospitalised until her third visit to the emergency room and third COVID-19 test. At the time, Heather-Elizabeth already had advanced COVID-19 induced pneumonia. As a result, it wasn’t appropriately treated in its initial phases, and nine months after her COVID-19 experience, Heather-Elizabeth Brown is still on her way to complete recovery.
While there is no consensus on treating persisting COVID-19 symptoms among medical professionals, Lowenstein’s team is trying to develop protocols and guidelines of their own. Active members of the group spend a lot of time studying articles and research papers on the role of patient experience in medical practice. “Obviously we are not doctors, but we are sitting here saying that we will be our own doctor until we can get the medical community to give us answers,” says Rachel Robles, a Body Politic member, who has had symptoms of COVID-19 for more than six months.
From patient advocacy to improved treatment
Though drawing the officials’ attention might turn out to be a tough call for the COVID long-haulers, previous experiences of HIV activists and chronic fatigue patients creates optimism.
The HIV/AIDS movement of the 1980s pushed public health officials to expand funding and to change the principles of clinical trials for disease research and drug development. As little was understood about HIV/AIDS, activists actively engaged in scientific discussion and shared their personal experiences to boost research into the disease.
In most studies, 50% of participants were given a placebo rather than the real drug. AIDS activists suggested that placebo trials should be abandoned in favour of other, more effective approaches. Many of the proposed measures were adopted in clinical research, which allowed shortening the trial period and provided many AIDS patients with access to treatment.
Fiona Lowenstein, who has long been interested in activist movements, says Body Politic COVID-19 support group has been inspired by the actions of AIDS activists of the 1980s. “AIDS activism was the first thing that came to mind for me in the early stages of our movement,” says Lowenstein. “It offered a template for me in terms of how to communicate with health agencies.” Body Politic founder also believes that today public health officials are ready to listen to patients only thanks to the efforts made by the AIDS activists.
From a world of pain to a world of hope
But HIV/AIDS activists are not the only historical example of patient influence on medical practice. Speaking about COVID-19 patient support and activist groups, Dr Ancha Baranova of George Mason University refers to similar groups that pushed the medical community to recognise fibromyalgia as a disease.
It is believed to affect approximately 4% of the world’s population, but, as the disease has not yet been recognised in many Asian countries, it is difficult to assess its worldwide prevalence. Though fibromyalgia was first described in the 1800s, it wasn’t recognised by the American Medical Association as a disease until 1987. The recognition was the result of massive awareness and advocacy campaigns launched by fibromyalgia activists and support groups.
Fibromyalgia patients, including stars and influencers, continue to actively use social media to raise awareness about the disease and share their coping stories. American music icon Lady Gaga, who was diagnosed with fibromyalgia a few years ago, shared her story of fighting pain in several documentaries and her social media accounts.
The story was pretty much the same with chronic fatigue syndrome, which wasn’t recognised and caught public attention thanks to support groups’ actions.
Making steps towards the recognition
Though long-haulers’ way to recognition might seem long, the history of patient activism is boosting their hopes. Besides, it looks like public health officials are listening to the long-hauler rhetoric. COVID-19 long-haulers have recently had meetings with National Institute of Health (NIH) heads Dr Anthony Fauci and Dr Francis Collins. Furthermore, post-COVID activists have met Dr Tedros Adhanom Ghebreyesus, the head of the World Health Organization (WHO).
In May 2020, Patient-Led Research for COVID-19, the research branch of Body Politic, published survey results evaluating the experiences of people who suffered COVID-19 symptoms for more than 30 days. Though the paper was not a serious scientific piece but rather an insight into personal experiences and expectations, the findings caught journalists and medical professionals’ attention. The publicity might have helped the group to arrange meetings with public health officials. After the results were presented to the WHO, it promised to create a study group to examine the long-term effects of COVID-19.
Around the time Body Politic’s first survey was published, Mount Sinai Hospital opened its Centre for Post-COVID care — the first facility of its kind in the US. Hundreds of patients showed up right after the opening ceremony. () Soon, similar centres appeared in other American states and other countries like Canada, UK, and India.