“People in this country have had enough of experts.” Of all the infamous political assertions from the past decade or so, this one, famously uttered by Michael Gove in the lead-up to the Brexit referendum in 2016, has certainly stood the test of time. As a bedbound author severely disabled by a mild COVID infection in 2021, I, like many in my community, look on in horror as a toxic battle about our very existence ensues, from which we have been effectively shut out.

The members of our community who are most severely affected are noticeably uninvited to the great disability benefits debate, which is battled on our behalf by representatives we did not choose. This leaves social media platforms as the only real voice for many of us to share our challenges and disquiet. This tension has come to a head recently in a very vocal row between Jeremy Vine, his defenders and disabled people on platforms such as X, which resulted in him stepping back as the unpaid presenter for the Carers UK Awards.

The reason for this backlash primarily surrounded the tone and discourse of his popular channel 5 talkshow. Vine’s live debate program brings in hundreds of thousands of daily viewers, with well-known commentators and unvetted callers weighing in on controversial topics such as, would you believe it, welfare and benefits. With seemingly little requirement for fact-checking, many feel the show is contributing directly to the increased hostility towards disabled people and other minorities. Critically for the severely ill, this is happening alongside a decrease in access to adequate healthcare, both for routine conditions, but in particular for those who became seriously ill as a direct consequence of the COVID virus.

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On top of this, users brought up various X posts from his account suggesting that something needs to be done about the ballooning welfare bill. This effectively resulted in a very public war of words on social media, when Carers UK announced that he would be presenting their yearly awards that take place in October. Following a wave of criticism about the announcement, he quickly offered to step back after confirming he had originally taken on the role in an unpaid capacity in support of the community.

Despite some minor abuse and a reduction in my already modest X followership, I did somewhat come to his defence initially, not because I think he was an appropriate host by any means, but because I felt too much emphasis was being put on one player in a wider toxic ecosystem; an ecosystem of low-quality, rage-bait-promoting, reactive journalism, that has very much “had enough of experts.” I was also concerned that the tiny minority of overtly aggressive and personal attacks he received, like I did, would result in even worse publicity for the disabled and chronically ill community - which seems to have been the case.

People were also rightly furious not only with the tone-deaf selection of Vine as presenter for Carers UK, but also with the charity’s response. Whilst I cannot speak for all disabled people with unpaid carers, anecdotally and as evidenced by this incident, many of us are feeling increasingly isolated from some key charities tasked with championing our well-being.

This is particularly true for those living with post-viral illnesses, whether it be the millions who contracted long COVID, ME/CFS and severe dysautonomia during the pandemic or prior. We face relentless media attacks suggesting our conditions are internet-based hypochondria, alongside an NHS that - despite fatality being a known possible outcome of such conditions - still offers no specialist pathways or medical treatment. This leaves untold numbers economically inactive and without any specialist overseeing their care. Furthermore, the vitriol and systemic gaslighting aimed at our community, which has ramped up notably since the pandemic, stands in stark contrast to the unwillingness of major charities to grapple with the institutions responsible.

Vine’s most vocal supporters have rushed to defend his character, which is perfectly reasonable, but they have also passionately defended the discourse platformed on his show and even its format. Far from questioning the legitimacy of having ‘Mary from Clacton’ call in to say her sister’s ex-best friend spends her PIP money on vajazzles, the accusation seems to be that the disabled community and their carers are trying to quash journalistic inquiry.

Certain defenders suggested that we should call into the show, or even that we should take a holiday and smile more. Not only does this completely ignore the physical and cognitive access barriers of this (or going on holiday) alongside the risk of being targeted by vicious, unqualified commentators and viewers, but we know that nobody wants to hear from us. They want to hear from Mary. They want to hear from a vulnerable, clearly confused woman who wrongly claims she was given PIP for an emotional support dog. They want to hear from the 18-year-old who just got an ADHD diagnosis on a five-minute private Zoom call. They certainly don’t want to hear the word “COVID” unless it is followed by “has made everyone work-shy snowflakes.”

And there is a very serious and justifiable resentment behind this visible uproar. The toxic combination of clickbait journalism, rejection of expert opinion and an obsession with easy answers has created a self-perpetuating minefield of misinformation, scapegoat culture and total reactivity. Informing the public and finding and presenting the truth underneath the noise is no longer the priority. On this occasion, the disabled and severely ill had managed to bypass the media gatekeepers and ruthless, viewership-obsessed producers to make their voices heard. However, this is already showing signs of being twisted into an equally cynical cancel culture debate, which once again demonises millions of disabled people for daring to speak out.

This issue is far bigger than Jeremy Vine and far more important than a single charity event. Putting basic humanitarian arguments aside, which have long been disregarded, if we truly want to reduce welfare payments and economic inactivity, the quality of discourse surrounding these topics has to improve. A step forward would be the cessation of institutional COVID denialism, a return to expert-backed debate and the meaningful inclusion of those who are actually affected. This is crucial not only for those suffering themselves, but for the sake of civil harmony, economic growth and a healthier society.

Following the recent barrage of ill-informed attacks on the disabled and chronically ill within the United Kingdom and beyond, I felt it was about time that someone corrected the record and busted some common misconceptions - because you can bet your bottom dollar that you won’t be seeing this in the mainstream anytime soon.

Before launching into the myth-busting, I must make a boring but necessary disclaimer. I am not diagnosing anyone or speculating as to what may be going on in anyone else’s body. I am merely exploring the most damaging falsehoods I have encountered during this tedious journey, in the hope they may be useful to others.

Myth 1: “It’s just a bit of tiredness.”

Reality: Have you ever had alcohol poisoning? If so, imagine that on top of the flu. If not, imagine the worst hangover you’ve ever had in your entire life on top of the flu. Now try to push through and see if you feel any better.

Myth 2: “You’re deconditioned! You need to push through and do more exercise.”

Reality: For patients with PEM, exercise is not therapy; it’s a trigger for a worsening illness. Imagine picking at a scab every day before it has a chance to heal and being surprised when it gets worse.

Myth 3: “It’s all in your head.”

Reality: Without discounting genuine cases of psychosomatic illness, pretending a global pandemic had no physical impact on millions of survivors who now share remarkably similar symptoms is conspiratorial and reckless. This also doesn’t account for many who suffered from similar conditions long before that bat ate that pangolin at the wet market (or whatever the hell happened). Biomedical research points to clear physical abnormalities across post-viral illnesses, including documented neurological changes in post-mortem studies of ME patients.

Myth 4: “Anyone can cheat the system and get disability benefits.”

Reality: Good one.

My first PIP assessment was so harrowing that despite being housebound at the time (now bedbound), I scored one point overall. I was so humiliated and distraught that I didn’t try again for another year. I was told that pacing was a choice, cleaning myself once every five days was sufficient, and having a partner to do everything for me meant that there wasn’t a problem. And the cherry on top of the shit pie?: I couldn’t have brain fog because I graduated with a languages degree (six years before said bat ate said pangolin and made me ill).

And this is a pleasant experience in comparison to other corroborated stories.

Myth 5: “Everyone is faking illnesses now.”

Reality: THERE WAS A GLOBAL PANDEMIC.

Myth 6: “Adrenaline surges and insomnia mean you’re just stuck in fight-or-flight mode.”

Reality: Whilst this can sometimes be the case, in others, the body compensates for hypoperfusion (i.e. insufficient blood getting to essential organs) by dumping adrenaline. This is why chucking beta-blockers at people without any consideration as to the underlying mechanism can make some patients more unwell.

Myth 7: “POTS only affects teenage girls and only presents with low blood pressure.”

Reality: A 0.5-second Google search will explain the different POTS subtypes and related blood pressure patterns. To imply that only teenage girls can acquire autonomic dysfunction, particularly post-virally, reflects poorly on whatever medical school trained the person making this assertion.

Myth 8: “Meditation and breathwork are all you need.”

Reality: In the same way that someone with any other biomedical disease, such as heart failure, requires proper medical intervention, so do we. Anyone claiming it is a cure in and of itself is a scammer.

Myth 9: “Meditation and breathwork are inherently dangerous.”

Reality: Both of these practices can be adapted to a horizontal position. They don't require incense or a special floor cushion, nor are any specific breathing patterns mandatory. They aren't exclusively about toxic positivity and can help some people cope with feelings of hopelessness, abandonment and uncertainty. They can also make some sufferers feel more relaxed inside their bodies during a time of distress. It can be helpful to see these practices as tools of support, but never as a reasonable replacement for medical care.

Myth 10: “My uncle had what you had, but he just carried on and it went away.”

Reality: No, he didn’t.

Please feel free to share your experiences in the comments, alongside the myths you encounter the most often. If there’s the appetite, I will be continuing the Chronic Misconception Chronicles over the coming weeks. With the megaphones currently tightly gripped by the slimy hands of the disability-demonising cabal, I’m sure there will (unfortunately) be plentiful material to work from.

In 1991, the fantastically named Norwegian sociologist Dag Album coined the term “disease prestige.” In short, this woefully underdiscussed concept describes how medical conditions are informally ranked in a distinct social and professional hierarchy within healthcare. The phenomenon he described is that diseases with well-established treatments and surgical procedures affecting well-understood organs enjoy institutional respect, whereas chronic, multi-system conditions where no simple fix exists are relegated to the bottom of medicine’s social ladder. Of course, this then demotes the patient to the bottom rung, often accompanied by the myth that the latter category is merely debilitating rather than fatal - something that those in our community know is simply untrue.

Before diving into the additional burdens carried by those of us with “unacceptable” diseases, it is worth clarifying that this piece is not intended as a clumsy Olympics of patient suffering. It is a sociological analysis of why some chronically ill patients are treated abominably by healthcare, social care systems and wider society, whilst others receive basic institutional support, validation and compassion. This, of course, occurs despite diseases like Myalgic Encephalomyelitis (ME) registering the lowest Quality of Life (QoL) score of any condition studied in a nationwide 2015 PLOS ONE trial. In fact, it scored significantly lower than lung cancer, chronic renal failure, stroke and heart disease.

This condition, alongside other Post-Acute Infection Syndromes (PAIS) like long COVID and dysautonomia, lies firmly at the bottom of the medical hierarchy. Despite the rarely mentioned pandemic causing an explosion in case numbers, the “yuppie flu” stigma of the 1980s still seems to be dictating the institutional response of today. This continued refusal to acknowledge current research (which, whilst inadequate, does now exist) has sabotaged effective diagnosis and treatment, whilst giving patients additional stresses, responsibilities and even trauma on top of the disease itself.

In order to make this article as accessible as possible for those in our community, I have split it into subsections for staggered reading.

1. The Diagnostic Battle

Strict ten-minute consultations and single-symptom rules pretty much eliminate PAIS and similar conditions from the established medical framework from the get-go. Even with documented proof, such as my five months of positive COVID tests, multiple doctors still questioned how I could be sure my rapid deterioration was COVID-related. Today, widespread COVID amnesia and shrinking services due to “reduced demand”… mean many clinicians have never even heard of conditions like dysautonomia or MCAS, leaving patients stranded and often without answers from the first appointment. Self-diagnosis invites public attacks from the ghouls of the sociogenic gaggle, whilst private diagnosis comes at extortionate cost and is still routinely ignored by some NHS GPs. Therefore, the burden of proof of illness must be added to the already heavy toll of the unacceptable disease.

2. “It’s A Trap!” - Diagnoses of Exclusion

A diagnosis of exclusion is essentially a label based on absent test findings rather than positive clinical criteria. Faced with medical uncertainty, clinicians often default to psychiatric explanations, which in some cases can essentially serve as a “shut up and fuck off” to patients. PAIS often falls under the same umbrella, siloing both genuinely affected patients and those misdiagnosed with other underlying causes into non-treatment pools without specialist input. Follow-up is rarely scheduled, with many clinicians treating the diagnosis as an end in itself. The tragic case of Jessica Brady, who died from cancer after being labeled with long COVID, is a stark example. Not only was she routinely dismissed as her symptoms worsened, the long COVID label she was given was deemed synonymous with “no action needed.” The sloppiness of this practice has a further dangerous impact. Those misdiagnosed with ME or FND may appear to respond “well” to behavioural treatments, further entrenching the psychogenic myth of an illness they didn’t have in the first place.

Whilst being given a label that, on a good day, raises eyebrows and, on a bad day, causes audible scoffing is unpleasant, the true burden is the result: endless self-advocacy, complaints, record-correcting and eventual, weary capitulation.

3. Unpaid NHS Admin Duties

For many in our community (and many others, in fairness), organising medical appointments is a nightmare. This is especially true for those of us who are too unwell to access face-to-face care, requiring home treatment - something that the NHS is seldom willing to accommodate in cases of stigmatised illness. In increasingly desperate attempts to secure help, many of us are forced to carry out endless data collection, whilst having to be mindful to avoid reinforcing behavioural stereotypes like “health anxiety” at all costs. This essentially involves having to practice a funnel of questions that leads the practitioner to believe they came up with the idea.

Patients like myself may find themselves having to analyse their own incoming results and act as unpaid admin assistants as notes inevitably vanish between doctors and departments. Whilst other disease communities receive concrete updates and clear pathways, we might find one ally only to be confronted by three detractors, dropping us straight back to the bottom of the ladder. Of course, record-keeping across the NHS is notoriously patchy at best, but for those with “unacceptable illness,” the desire to even try seems to be lacking. After all, if it’s largely psychosomatic, why waste up to 3 calories by including the pertinent information?

4. The Brick Wall of Welfare

The next exhausting and familiar saga comes when trying to secure financial support. Relentless employment pressures mount when living with an illness with no prognosis and that is parasitically paired with rampant misinformation.

This battle must often be fought without meaningful medical backup, with many lucky to receive a fatigue-related sick note covering more than one month. When turning to the welfare state, we hit a system that is able to capitalise on the lack of healthcare knowledge and provision. With private assessors incentivised to focus on the “best days” despite existing criteria, the line is often “PIP isn’t designed for these sorts of conditions”. That being said, the services hired by the Department for Work and Pensions routinely break their own statutory rules. Specifically, this includes the reliability criteria, requiring an activity to be completed safely, repeatedly, reliably and in a reasonable timeframe to score zero points. On top of this, the 50 percent rule is regularly flouted - a rule ironically designed to protect those with fluctuating conditions.

Stigma and the related fallout makes compiling supporting evidence exceptionally more difficult, as doctors seldom agree to document what they do not understand, believe or choose to psychologise. As a result, vast numbers of people are left with nothing: no medical pathways, no specialist input and no financial support.

5. The Social Toll - Relentless Interrogation

A familiar experience for many in our community is the constant need to explain ourselves to pretty much everybody. Whilst someone undergoing chemotherapy or recovering from major heart surgery is normally granted immediate empathy, respect and space they need and deserve, PAIS and similar enjoy no such shared understanding. Instead, patients are frequently subjected to relentless, Stasi-level interrogation, forced to constantly field draining questions like “Are you back out and about yet?” or “When do you think you’ll be back at work?”. Despite this sometimes being well-meant, it represents an additional job for the patient: managing their own PR.

On top of this, because conditions like long COVID, ME and dysautonomia, if they are even known to people, are widely misperceived as a bit of non-serious dizziness or tiredness, rest is rarely respected as the critical and often sole medical intervention it is. For this reason, even those who mean us no harm may actively encourage us to push through dangerous symptoms, believing our mindset to be, at least in part, playing a role.

Patients are left to manage the expectations of friends and family, carrying the additional emotional weight of having to perform progress, which often backfires, or conversely, to prove our suffering, which feels yacky and sleazy. Over time, as recovery fails to follow a linear timeline, or as we get worse, many friends and acquaintances quietly drift away. This leads to a profound sense of social abandonment, compounding that which is already caused by the institutional response to our illness.

6. Worn Out Carers

When the health and social care systems slam the doors shut, it often falls onto partners, parents and other family members to pick up the pieces. They are effectively forced into demanding caregiving roles without training, guidance or support. At times, and in more severe cases, this can extend to life-preserving, hospital-level care, such as terrified loved ones having to assist with spoon-feeding, hydration and vital-signs monitoring, whilst emergency services turn their backs due to normal snapshot SpO2 readings.

Tragically, the unpaid carers of those with “unacceptable illnesses” remain completely invisible to the state, left to burn out without respite, recognition or medical guidance. The lack of a clear prognosis or even basic acknowledgement of the patient’s condition leaves them and their carers unable to plan for the future or hold onto a sense of hope.

7. The Gagged Target of Vitriol

As many of you are all too aware, chronic illness communities are constant targets of media and political vitriol. As this ramps up, it is beginning to infiltrate public discourse, with increasing amounts of people now considering any COVID-related illness to be a fabrication - and one of the reasons for their personal hardships.

We are frequently framed as lazy and hysterical, yet we are almost never given the platform or opportunity to push back. Media outlets and public figures, including from inside the medical community, spew hostile demedicalisation commentary without fear of accountability, knowing that severe functional impairment leaves us physically unable to fight back. Whilst all severely debilitating illnesses are horrendous to endure, these demeaning attacks are primarily reserved for those at the bottom of the “disease prestige” ladder, and thus go unchallenged.

8. Conclusion

If you’ve managed to get this far, you may be expecting a silver lining, reassurance that things are slowly changing or a concrete action plan. Unfortunately, I’m in no position to provide any of these things, apart from a personal congratulation for still being here and continuing to fight what I think we can all agree is the shit-sandwich Final Boss.

But sadly, I’m not a doctor nor am I a divisive commentator with news outlets and publishing houses fighting to champion and platform me. Furthermore, my refusal to adopt both-sideism, whereby equal consideration is given to two sides of an opposing argument, regardless of its merit (i.e. that there is a plausible defence of systemic abandonment and even cruelty), makes me unlikely to be welcomed into any discourse that could tackle this dangerous and outdated prestige hierarchy.

However, I hope that by articulating these underappreciated extra pressures under which we all struggle, many will at least find some solace in the sense of community this provides us with. Over time, I intend to share more actionable resources that will allow sufferers to set the boundaries they need and advocate for themselves as much as possible in a cruel and broken system. But for now, I hope just the acknowledgement makes sufferers feel less alone.

I am a youngish woman who nearly lost her life last year to severe post-viral illness, followed by a catastrophic reduction in baseline function. This left me bedbound and requiring full-time care. Having been repeatedly psychologised by the NHS to the point of critical collapse, the tug of war between supporters and detractors of the online chronic illness awareness movement (or trend, as they would refer to it) is an excruciating watch.

On the one hand, it would be disingenuous to insist that not one single person has ever hammed up or fabricated an illness for attention, as evidenced by the minority of exposed TikTokers who previously enjoyed enormous viewerships, such as the now infamous Tics and Roses. I also vividly remember convincing myself in my youth that I had a certain identity, which later turned out to be incorrect. This yearning to be part of a wider community is part of human nature, especially for the young. It’s simply more visible now, thanks to social media.

An important point to consider in this instance, however, is how a noticeable increase in chronic illness content, combined with increased reliance on mobility aids, has followed a global pandemic. For anyone who is confused, a quick Google search would reveal the recent explosion of post-viral and related illness, particularly amongst young to late-middle-aged women. It would also indicate a general decline in physical health across the entire population. For those who may be scratching their heads: sometimes, the most obvious explanation is the correct one.

Whatever their origins, using transient social media movements to dismiss the biological reality of illnesses that can be deadly, is simply inexcusable.

This is particularly indefensible for those in medicine who, despite well over 2 million people in the UK living with long COVID alone, alongside mounting tangible research findings, insist that post-viral and related syndromes are primarily psychosomatic. With the aforementioned pandemic context in mind, insisting that nobody is more physically unwell than they were six years ago borders on conspiratorial.

After a mild COVID infection in 2021 left me with severe, multi-system hypovolaemic dysautonomia and ME amongst other conditions, I can no longer tolerate even sitting due to immediate, visible blood pooling and insufficient blood volume. Despite juggling a pharmaceutical collection that would make most 90-year-olds blush, I am heavily disabled. This reflects how unwell I was left to become before my eventual collapse, rather than resistance to treatment. In fact, my private treatment is indeed working: I am no longer in a life-threatening state and I am writing this unaided from bed. But this remains the upper end of what I can do.

I therefore groan when I very occasionally see POTS reduced to a fun quirk with barely knee-high (thus largely ineffective) colourful socks on Instagram. My heart also sinks at disability rage-bait suggesting you can be too ill to work in the morning but well enough to do a triathlon in the afternoon. This content does exist, but it is purely designed to generate enough vitriolic engagement to financially exploit.

But the reasons for my dismay at this behaviour differ considerably from those of the heavily platformed critics.

Unlike those blessed with enough health to spend time demonising vulnerable people whom they find personally irritating, my concern is for the victims of this culture war.

Those moderately to very severely affected by long COVID, ME, dysautonomia, EDS, MCAS and similar conditions face the worst of both worlds.

The tiny but vocal pool of mildly affected creators, some of whom refute that they even have a “disorder” in the first place, paint our suffering as a bit of fashionable discomfort and inadvertently promote a “demedicalisation” narrative. Meanwhile, the NHS and government have completely failed to grapple with these serious diseases over decades, leaving many abandoned and without appropriate specialist care. For ME sufferers such as Maeve Boothby-O’Neill, Sophia Mirza and Lynn Gilderdale, this has resulted in young women tragically succumbing to their illness following years of institutionalised scepticism.

Now COVID has put case numbers on steroids, millions remain systemically abandoned, forced into private healthcare, which, in my case, can cost up to four figures in a single month. Those without a pot of no-longer-needed family planning savings are often left without care. In the worst cases, patients completely drop off the NHS radar due to being too unwell to access a system that lacks the knowledge or desire to help.

Whether through ignorance, indifference, boredom or malice, those using their platforms to tar all patients with the same brush are essentially advocating for this cruel and economically reckless status quo to continue unchecked - a status quo that contributes to rocketing welfare costs, record levels of workplace absenteeism due to sickness and a healthcare system under enormous strain. And all of this, for the sake of, very publicly, getting a personal gripe off their chest.

Through this toxic discourse, our communities’ cries for help are being drowned out and our realities rewritten whilst we, by the very nature of our illness and institutional denial, have been effectively silenced.

This article serves as a plea for us to do better - especially those with the power to influence policy and governmental thinking.

I’ll conclude with a simple analogy. We’ve all witnessed cases of people fabricating cancer diagnoses, be it now-infamous celebrities or just that one weird kid at school. Either way, it’s always a microscopic fraction compared to genuine cases. However, it has been perfectly possible for us to condemn the fabricating minority whilst maintaining the biological existence of the disease. We’ve also maintained compassion for the vast majority, despite being hoodwinked by one bad actor.

We just need to start applying the same adult thinking - the kind of critical thinking skills taught to high school children - when it comes to severe, complex and poorly understood conditions. If we are to improve the lives of patients and those suffering the economic fallout of their abandonment, this shift towards pragmatism is non-negotiable. It’s also time for the mic to be pried from the cold, ghoulish hands of those who choose to dispute our very existence and given to those most severely impacted.