Last updated: June 2026 | Part of the series: How the World Searches for Long Covid
Severe Long Covid housebound bedbound patients are often missing from online communities, research studies and public discussions.
This entire series has been about people who found community online. People who posted on Reddit at midnight. Who tweeted about their symptoms before medicine had a name for them. Who joined Facebook groups and WhatsApp patient chats and built, collectively, one of the most remarkable patient-led knowledge movements in medical history.
But there is a group this series has not described. Has not been able to describe. Because they are not there.
They are not on Reddit because the cognitive load of reading and composing posts is beyond what they have available. They are not on Twitter because sustained screen time triggers crashes that last days. They are not watching YouTube because light sensitivity makes screens painful and the effort of following a video depletes resources they cannot spare. They are not in WhatsApp patient groups because even phone conversations are too much.
They are the most severely ill Long Covid patients. The housebound. The bedbound. The people for whom the digital community the very community this series has been mapping is as inaccessible as the clinical services that were supposed to serve them.
And they may be more numerous than most discussions of Long Covid acknowledge.
When people search for severe Long Covid, housebound or bedbound symptoms, they are often looking for something very different from standard Long Covid advice. They need recognition of extreme limitation, sensory intolerance, very low PEM thresholds, and the role of carers who speak and search on behalf of someone too ill to do it themselves.
What Does Severe Long COVID Actually Mean?
The word “severe” is often used to describe anyone with significant Long COVID symptoms, but in clinical practice it usually refers to something much more profound.
People with severe Long COVID are not simply more tired than others. Their functional capacity is dramatically reduced.
For some, leaving the house is no longer possible.
For others, even sitting upright for long periods, holding a conversation or tolerating light and sound may trigger significant worsening of symptoms.
Those with very severe Long COVID may spend almost all of their time in bed. Activities most people never think about—having a shower, eating a meal, listening to music or reading a few paragraphs—can become major physical or cognitive exertions.
The illness is measured not only by symptoms, but by what the body is no longer able to tolerate.
Understanding this distinction is important because advice that may be appropriate for someone with mild or moderate Long COVID can be completely unsuitable for someone who is housebound or bedbound.How Does Severe Long COVID Differ From Moderate Long COVID?
Long COVID exists on a spectrum, and not everyone experiences the same level of disability.
| Moderate Long COVID | Severe Long COVID |
|---|---|
| May leave the house occasionally | Usually housebound or bedbound |
| Can tolerate some screen time | Screens may trigger severe symptoms |
| Can often prepare simple meals | May rely on others for meals and personal care |
| Activity causes worsening, but recovery is possible | Even minimal activity can trigger prolonged post-exertional malaise |
| May attend appointments with support | Often unable to travel to clinics or hospitals |
| Can usually communicate independently | May rely on a carer to communicate and advocate |
The differences are not simply about symptom intensity. They reflect a fundamentally different level of functional capacity and a much narrower energy envelope.
Recognising this spectrum is essential when discussing treatment, research and support needs.
A Day in the Life With Severe Long COVID
For someone living with severe Long COVID, the day is often organised around conserving the smallest amount of energy.
The room may remain dark because light triggers headaches or neurological symptoms. Conversations are kept brief because speaking for a few minutes can worsen fatigue or brain fog. Meals may need to be prepared by someone else because standing in the kitchen is no longer possible.
Simple activities become careful calculations.
“Can I sit up long enough to eat?”
“If I have a shower today, will I still have enough energy to speak to my family later?”
“If I answer this phone call, will I spend the next two days recovering?”
These are not questions most people ever imagine asking themselves.
Yet for many people with severe Long COVID, every day involves balancing essential tasks against the risk of triggering post-exertional malaise.
The illness shrinks the world until life is measured not in plans or achievements, but in minutes of tolerable activity.
Who They Are: The Scale of Severe Long Covid
The word severe is used loosely in Long Covid discussions. Here it means something specific: people whose illness has so profoundly limited their functional capacity that leaving the house, using screens, having conversations, or sustaining any activity for more than a few minutes is beyond what their bodies allow.
One in four people with ME/CFS a condition sharing significant biological overlap with Long Covid are bedbound all the time. Sixty-one percent are bedbound on some days. Three quarters are too sick to work. These figures, documented at Yale, describe a severity spectrum that Long Covid increasingly mirrors as its cohort ages and those who will not recover spontaneously become clearer.
A recruiting clinical trial at Hannover Medical School — the ACCESS trial — was designed specifically around the recognition that housebound and bedbound patients are generally excluded from any studies because they are unable to visit outpatient clinics or hospitals for diagnostic work-up or participation in clinical trials. They are unable to leave their home and to seek medical support on their own physical and mental capabilities. They are usually seen only by their family doctor and have no access to medical specialists.
Read that again. No access to medical specialists. The people most severely affected by Long Covid are, by the nature of their severity, the people most systematically excluded from the clinical systems that exist to help them and from the research that might eventually produce treatments for them.
And they are equally excluded from the digital patient community that has, for everyone else, partially compensated for the failures of the formal system.
What Severe Long Covid Actually Looks Like
The most severely ill Long Covid patients exist in a world whose boundaries are measured in metres rather than miles — and in minutes rather than hours.
Their most troublesome symptoms, documented in the comprehensive examination of severely ill ME/CFS patients at NIH, include fatigue reported by 85%, pain by 65%, cognitive impairment by 50%, orthostatic intolerance by 45%, sleep disturbance by 35%, post-exertional malaise by 30%, and neurosensory disturbance by 30%. These are not individual symptoms. They are simultaneous. And in severe cases, the post-exertional threshold the level of activity that triggers a crash is so low that a brief conversation, a visit to the bathroom, or a few minutes of light can push a patient over it.
The world of severe Long Covid is often dark, quiet, and horizontal. Light sensitivity means blackout curtains and sunglasses indoors. Sound sensitivity means whispered conversations and no music. The screen of a phone the device through which almost all modern community and information access flows is itself a trigger. Not a barrier. A trigger. Something that actively makes things worse.
This is the condition that the digital Long Covid community, for all its extraordinary achievements in advocacy and mutual support, structurally cannot serve. Not because it has not tried. Because the tools it uses are the tools the most severely ill cannot use.
The Proxy Layer: Someone Has to Reach for Them
When a person cannot access the information, support, and community that exist online, someone else often steps into that gap. This is the proxy layer the carers, partners, parents, siblings, and friends who navigate the digital world on behalf of someone too ill to do it themselves.
The proxy experience is one of the least discussed and most demanding aspects of severe Long Covid caregiving. It involves:
Researching on behalf of someone who cannot. A partner who spends hours on Reddit and medical databases looking for information about a symptom their severely ill person described in a brief, exhausted communication. A parent who reads every new Long Covid paper, translates it into plain language, and delivers the key points in a two-minute summary because that is all the cognitive capacity their child has available. A sibling who attends online patient seminars and records them for later, then selects the two minutes of most relevant content to share.
The proxy researcher is doing intellectual work that should, in a functioning healthcare system, be done by knowledgeable clinicians. They are doing it without training, without support, without any formal acknowledgement that this is part of their caring role, and often while themselves exhausted from the physical caring that surrounds it.
Communicating on behalf of someone who cannot. A parent who posts in Long Covid Reddit groups describing their adult child’s symptoms, asking whether anyone has experience with the specific phenotype, seeking information about interventions that might help. A partner who manages a Twitter presence for their severely ill person sharing updates about their condition, amplifying research, maintaining the advocacy presence that their partner cared about before they became too ill to sustain it.
This proxy communication involves ethical complexity that is rarely acknowledged. When a parent posts about their adult child’s symptoms, they are making decisions about disclosure, privacy, and representation that are usually the patient’s own to make. When a partner maintains a social media presence on someone’s behalf, they are constructing a public identity for a person who cannot currently speak for themselves. These are acts of love and care — and they are also acts of significant power, even when that power is exercised with the purest intentions.
Advocating on behalf of someone who cannot. Attending GP appointments and Long Covid clinic visits as the patient’s voice, because the patient cannot tolerate the journey, the waiting room, the fluorescent lighting, or the cognitive demand of a clinical conversation. Writing detailed symptom histories for medical assessments. Completing benefits forms that run to dozens of pages. Preparing letters to employers, to landlords, to social services. Pursuing the formal advocacy that the patient needs but cannot pursue for themselves.
This advocacy role is often what stands between a severely ill Long Covid patient and complete institutional abandonment. The system requires active navigation. Active navigation requires capacity. The severely ill patient does not have capacity. The proxy provides it — or the patient goes without.
The Hidden Cost for Families and Carers
Severe Long COVID rarely affects only one person.
Behind many housebound or bedbound patients is a family member whose own life has changed dramatically.
Partners become full-time carers.
Parents continue caring for adult children long after they expected them to become independent.
Children sometimes take on caring responsibilities far earlier than they should.
Many carers reduce their working hours or leave employment altogether. Financial pressure grows while navigating disability benefits, healthcare appointments and an illness that remains poorly understood.
The emotional burden is equally significant.
Watching someone you love disappear from the life they once had—while being unable to predict whether recovery will come creates a form of ongoing grief that rarely receives recognition.
Supporting carers is therefore not separate from supporting patients.
It is an essential part of caring for people with severe Long COVID.
What the Proxy Needs That the System Does Not Provide
The proxy layer carries extraordinary responsibilities with almost no formal support, no training, and no acknowledgement in clinical systems that this role exists.
What proxy carers consistently report needing:
Accurate, current information they can access and then translate. The proxy researcher is not seeking information for themselves. They are seeking it for someone who will receive it in a highly filtered, cognitively accessible form. They need sources they can trust sources that are accurate, current, and honest about uncertainty that they can then distil into the two minutes their person can receive. This is a different information need from the patient who can read for themselves. It is the need for a reliable source they can stand behind when they say “I read that this might help.”
Carer-specific communities that acknowledge the proxy experience. The Long Covid digital communities this series has described are largely patient communities. Carers appear in them — in Facebook groups particularly but rarely as the primary identified role. A parent describing their severely ill adult child’s symptoms in r/covidlonghaulers is present in the community but is not the community’s primary focus. What proxy carers need is space specifically for the proxy experience the specific grief of watching someone you love be sicker than the system acknowledges, the specific exhaustion of navigating everything on their behalf, the specific loneliness of a caregiving role that has no template and no support structure.
Clinical acknowledgement that they exist. In most clinical encounters for severely ill Long Covid patients, the carer who attends as proxy is present but not formally recognised. Their role in managing the patient’s care, their knowledge of the patient’s symptoms and responses, their exhaustion and their needs none of these are typically part of the clinical record or the care plan. They are the person who makes the appointment possible and then disappears from the documentation.
The ANZMES guide on severe ME/CFS and Long Covid in secondary care — one of the few formal clinical resources addressing this population specifically noted the importance of including family members or caregivers in discussions and allowing them to stay with the patient if requested. This recommendation exists because the default clinical system does not include them. They have to be specifically permitted. That is the degree to which the proxy layer has been excluded from formal clinical processes.
The Digital Exclusion Within the Long Covid Community
The Long Covid patient community online has achieved something remarkable. It has also, structurally and without intention, replicated one of the central dynamics of the formal system it was responding to: the exclusion of the most severely ill.
The digital community was built by and for people who could use it. This is not a criticism. It is a structural reality. You cannot build a Reddit community for people who cannot use screens. You cannot create a Twitter advocacy movement for people who cannot type. The tools available shaped the community that was possible.
But the consequence is that the community’s knowledge base, advocacy priorities, and collective understanding of the condition are systematically shaped by the experiences of people well enough to participate. The most severe presentations, the most extreme functional limitations, the experiences of people for whom pacing means choosing between a bathroom visit and a brief conversation these are underrepresented in the community knowledge that has shaped Long Covid’s public narrative.
When researchers analyse Reddit posts to understand Long Covid symptom patterns, they are analysing the experiences of people who can compose Reddit posts. The NIH studies that recruited through online platforms reached the people who could navigate those platforms. The advocacy that reached policymakers was produced by people capable of the energy and cognitive output that advocacy requires.
The most severely ill are present in statistics as numbers. They are absent from the narratives that those statistics generate. Their experience is known, if at all, through the proxy accounts of the people who care for them — accounts that are inevitably partial, filtered through a different person’s perception and communication, and often produced in the margins of an exhausting caregiving day.
What Reaches the Most Severely Ill
Not nothing. But very little, and through very narrow channels.
The proxy researcher, translated. Information reaches severely ill patients through the people who research on their behalf and then deliver it in accessible fragments. The quality of this channel depends entirely on the proxy’s research skills, their access to reliable sources, their ability to filter and translate, and their understanding of how much the patient can receive and when. It is an extraordinarily imperfect channel. It is often the primary one.
Audio in small doses. For patients who cannot tolerate screens, audio content podcasts, voice notes, audio versions of articles offers a possible alternative when symptoms allow. Not all patients can tolerate audio either sound sensitivity and auditory processing difficulties are common in severe Long Covid but for those who can, brief audio content listened to in the dark represents one of the few possible windows into the information environment.
Brief text by proxy. A carer who reads a relevant paragraph aloud. A partner who reads out the key finding from a new paper. A friend who summarises a Reddit thread in two sentences. Information delivered not through a device but through a voice, in a darkened room, in quantities calibrated to what the patient can receive at that specific moment.
Medical letters and formal documentation. For some severely ill patients, formal medical documents clinic letters, referral outcomes, assessment reports are among the few external information sources that reach them directly. This is the information environment at its most impoverished: the patient’s primary access to knowledge about their own condition is through the formal clinical letters that summarise other people’s assessments of them.
The patient community, filtered by proxy. A proxy who participates in Long Covid WhatsApp groups, Reddit communities, or Facebook groups, and brings back what they find, represents a further filtered access point. The patient receives a doubly translated version of community knowledge — translated first by the community in producing it, and then again by the proxy in selecting and delivering what is relevant and manageable.
Research That Excludes the People Who Need It Most
One of the most painful ironies of Long Covid research is that the studies most urgently needed — studies of severe and very severe presentations — are the hardest to conduct, because the patients who need to be studied cannot participate in the ways research currently requires.
Clinical trials typically require participants to attend appointments, complete questionnaires, undergo testing, and maintain engagement over months. All of these requirements are barriers that scale with severity — the sicker the patient, the less able they are to participate in the research designed to help them.
The ACCESS trial at Hannover Medical School, specifically designed for housebound and bedbound patients, represents a recognition of this problem and an attempt to address it through home visits and digital monthly consultations. It is one of very few trial designs that explicitly centres this population rather than inadvertently excluding it through participation requirements the patients cannot meet.
The exclusion of severe patients from research has direct consequences for what treatments are developed and for whom. Interventions tested in populations of moderate severity may be entirely inappropriate for very severe patients. Management approaches developed through the experience of people well enough to participate in trials and online communities may not translate to people for whom any activity triggers prolonged worsening.
The knowledge gaps created by this systematic exclusion are not small. They represent a near-total absence of evidence specific to the most severely affected population the very population for whom the consequences of inadequate treatment are most severe and the costs of inappropriate treatment are highest.
What the Proxy Layer Tells Us About Long Covid
The existence of the proxy layer the carers who navigate the digital world on behalf of people too ill to do it themselves tells us something important about the true severity distribution of Long Covid that the digital community’s self-representation does not.
The digital community looks like people who can participate in it. The proxy layer reveals the people who cannot. And the proxy layer is not small. The numbers of severely ill Long Covid patients housebound, bedbound, living in darkened rooms, managing symptoms measured in minutes are not known with precision because the research has not been designed to find and count them. But every proxy researcher in a Reddit thread, every parent posting about their adult child’s condition, every partner managing a social media presence for someone too ill to sustain one themselves, is evidence of a person behind them for whom the digital community is inaccessible.
The digital Long Covid community has done something extraordinary. It has validated a condition, shaped research agendas, built mutual support systems, and demonstrated the power of collective patient knowledge in the face of institutional failure. But it has done these things for the people who could be in it. The people who could not who needed it most and could access it least have been present in the conversation primarily as the people others speak about.
This is the final and most important incompleteness of the digital Long Covid story. The most visible community is not the most representative one. The loudest voices are not the most severely affected ones. The achievements of the community — real and significant — belong to a part of the patient population, not to all of it.
Acknowledging this is not to diminish what has been built. It is to name what has not been built yet — the infrastructure, the adapted formats, the proxy support systems, and the research approaches that would bring the most severely ill into the conversation they have been excluded from. Not as subjects. As people.
What Would Actually Help
Naming the problem is not the same as solving it. But naming it precisely is the beginning.
Proxy-specific community spaces. Not patient communities that carers can join, but communities designed specifically for the proxy experience — the specific grief, the specific exhaustion, the specific knowledge needs, and the specific ethical navigation of advocating for someone who cannot advocate for themselves. Long Covid SOS and similar organisations have begun developing carer support, but proxy-specific community remains significantly underdeveloped relative to need.
Information designed for delivery rather than consumption. Content designed to be read to someone, summarised for someone, delivered in two-minute audio fragments — rather than content designed for a reader who can give it sustained attention. This is a different design problem from accessible health information generally. It is information designed for the gap between what is knowable and what the most severely ill person can receive.
Research that goes to where the patients are. Home-visit research protocols, postal questionnaires calibrated for very limited energy, proxy-reported data collection, and adaptive trial designs that allow participation without attendance. The ACCESS trial model points in the right direction. It needs to be widely replicated.
Clinical recognition of the proxy role. Formal inclusion of carers in clinical records, care plans, and clinical communication. Carer assessments that acknowledge the proxy function as a clinical support role deserving of its own recognition and support. The person who makes every medical appointment possible — who prepares the symptom history, attends in the patient’s place, implements the management plan, and monitors the response — is performing clinical-adjacent work that the system currently treats as invisible.
And the most basic thing of all: naming these patients in discussions of Long Covid. Not as a footnote. Not as a statistic in the severe category. As the people the condition is most urgently about — the ones for whom the stakes are highest, the supports are lowest, and the distance between where they are and where the community conversation happens is greatest.
If You Are Reading This for Someone Else
If you are reading this article on behalf of a partner, parent, child or friend who is too ill to read it themselves, your role matters more than you may realise.
You are not only searching for information.
You are translating complex medical research into something understandable.
You are remembering details they cannot always remember.
You are attending appointments they cannot tolerate.
You are advocating when they no longer have the energy to advocate for themselves.
Much of this work happens quietly and without recognition.
Yet for many people with severe Long COVID, it is this invisible support that makes healthcare, research and daily life possible.
Although this article focuses on the patient experience, it is also written with carers in mind.
Your efforts are an essential part of the story of Long COVID.
How AI Could Help People With Severe Long COVID
Artificial intelligence will not cure Long COVID.
However, it may become an important accessibility tool for people who are too unwell to search, read or process large amounts of information themselves.
For many people with severe Long COVID, the greatest challenge is not that information does not exist. It is that accessing it requires more cognitive, visual or physical energy than they have available.
This is where AI may help.
A partner or family member can ask an AI assistant to summarise new research into plain language, explain complex medical terminology, compare studies, or prepare questions for an upcoming medical appointment. Instead of reading dozens of research papers, carers may be able to obtain a balanced summary that they can then discuss with the person they care for in short, manageable conversations.
AI may also make information more accessible by creating concise summaries, simplifying medical language or converting written information into formats that are easier to listen to or understand.
These tools are not a replacement for healthcare professionals, and they should never replace personalised medical advice. AI systems can make mistakes, misunderstand research or present outdated information with confidence.
For that reason, AI works best when it is used alongside trusted medical sources rather than instead of them.
For people living with severe Long COVID, and for the carers who often become their researchers, translators and advocates, AI has the potential to reduce some of the burden of finding reliable information. It cannot replace human care, but it may help bridge the gap between rapidly evolving medical research and people who have the least capacity to access it themselves.
Frequently Asked Questions
What is severe Long Covid?
Severe Long Covid refers to presentations where functional capacity is so profoundly limited that leaving the house, using screens for more than minutes, having conversations, or sustaining any activity is beyond what the person’s body allows. People at this severity level may be housebound — unable to leave their home — or bedbound, unable to get out of bed. Symptoms include extreme fatigue, significant cognitive impairment, light and sound sensitivity, and a post-exertional threshold so low that minimal activity triggers prolonged worsening. This population overlaps significantly with very severe ME/CFS, with whom Long Covid shares major biological mechanisms.
How many Long Covid patients are severely affected?
Precise figures are not known because severely ill patients are systematically underrepresented in research — they cannot attend clinics or complete standard participation requirements. What is known from ME/CFS data, which shares significant overlap with Long Covid, is that around one in four ME/CFS patients are bedbound all the time and 61% are bedbound on some days. The ACCESS trial at Hannover Medical School was specifically designed to find and study this underrepresented population, recognising that existing research has almost entirely excluded them.
What is the proxy layer in Long Covid communities?
The proxy layer refers to the carers, partners, parents, and friends who navigate the digital world — researching, communicating, and advocating — on behalf of Long Covid patients too severely ill to do it themselves. They research symptoms and treatments, post in patient communities describing their person’s condition, attend clinical appointments as the patient’s voice, and complete the formal documentation that the patient needs but cannot produce. This role is performed without formal recognition, training, or support, and it is what stands between many severely ill patients and complete institutional abandonment.
Why are severely ill Long Covid patients excluded from research?
Because clinical trial participation typically requires attending appointments, completing questionnaires, and sustaining engagement over time — all of which are impossible for people whose illness means that any activity triggers significant and prolonged worsening. The ACCESS trial at Hannover Medical School is one of the few trial designs specifically developed for this population, using home visits and digital consultations. Most research has inadvertently excluded the most severely affected by designing participation requirements the sickest patients cannot meet.
How does information reach severely ill Long Covid patients?
Primarily through the proxy layer — carers who research and then deliver filtered, translated fragments of information in formats the patient can receive. Sometimes through brief audio content listened to in darkness when symptoms allow. Sometimes through a carer reading a relevant paragraph aloud. Sometimes through medical letters from clinical encounters the proxy attended. The severely ill patient’s access to information about their own condition is almost entirely mediated through other people, in quantities and formats calibrated to what they can receive at each moment.
What does the digital Long Covid community miss about the condition by excluding severely ill patients?
Almost everything about the most extreme presentations. The knowledge base the community has built — about symptoms, management, advocacy priorities, and research needs — reflects the experiences of people well enough to participate in it. The most severe functional limitations, the most extreme sensory sensitivities, the experiences of patients for whom any activity carries significant cost — these are systematically absent from the community knowledge. Research drawing on community data inherits this absence. The result is an understanding of Long Covid shaped by its more moderate presentations, with the most severe effectively invisible to both community knowledge and the clinical research that community knowledge has influenced.
What would help the most severely ill Long Covid patients access support?
Several things that do not yet adequately exist. Proxy-specific community spaces designed for carers navigating the digital world on someone’s behalf. Information designed for delivery rather than consumption — content calibrated for the gap between what is knowable and what a severely ill person can receive. Research that goes to patients rather than requiring them to come to research — home-visit protocols, proxy-reported data, adaptive participation requirements. Clinical recognition of the proxy role as a formal part of the care system. And most fundamentally, naming these patients in Long Covid discussions not as a statistical category but as the people the condition is most urgently about.
Series: How Millions of People With Long Covid Built Their Own Medical System Online · Reddit: The Patient Archive · Facebook: The Caregiving Generation · X and Bluesky: Where Patients Shaped Science · YouTube: The Education Layer · TikTok and Instagram: Visibility and Misrepresentation · WhatsApp and Family Groups: The Most Human Layer · What the World Searches for When They Have Long Covid
Note on sources: This article draws on the ACCESS trial protocol at Hannover Medical School, the NIH comprehensive examination of severely ill ME/CFS patients, Yale School of Medicine data on ME/CFS severity, the ANZMES guide on severe ME/CFS and Long Covid in secondary care, and the Long Covid Citizen Science Board research agenda. Academic sources available on request.
Disclaimer: This article is for informational purposes. It does not constitute medical advice. If you are caring for someone with severe Long Covid, please seek support through your GP, social services carer assessment, and Long Covid carer organisations. his article is dedicated to the people living with severe Long COVID who may never be able to read it themselves, and to the family members, friends and carers who carry information, hope and advocacy on their behalf.
About Long Covid Journey
Long Covid Journey is an independent educational resource dedicated to helping people understand Long COVID through evidence-informed articles, peer-reviewed research and lived experience.
This article explores one of the least discussed aspects of Long COVID: the experience of people who are housebound or bedbound, together with the family members and carers who often become their advocates, researchers and link to the outside world.
It draws on published research into severe Long COVID, severe ME/CFS, patient-led research priorities, clinical guidance and the emerging evidence on how healthcare systems and research studies continue to underrepresent the most severely affected patients.
Throughout this article, we distinguish between established evidence, emerging research and informed interpretation. Where evidence is limited or evolving, we state this clearly rather than presenting uncertainty as fact.
Our goal is not simply to explain the science of Long COVID, but to ensure that the experiences of those most affected by the illness—including people who are often unable to participate in research or online communities—are recognised and represented accurately.
Because research into Long COVID continues to develop rapidly, this article is reviewed and updated regularly as new evidence becomes available.