Our mission - Legislate. Investigate. Ventilate. Educate.
Our mission statement is encapsulated by these 4 words - Legislate. Investigate. Ventilate. Educate. Let's go down the rabbit hole to investigate what they imply for people with Long Covid & ME/CFS & us all. We need deep systemic change for any chance of hope for those with infection-associated chronic illness. It goes beyond the need for a cure, we need the institutional structures in place to make sure treatment is accessible & equitable and for that, we need political & cultural change.
Legislate
We've seen through the pandemic that shifting the responsibility onto the individual to monitor their own & others' risk doesn't work. TBH we have seen some of the worst sides of humanity; right-wing tropes mixed with wellness calls for 'freedom' & massive cognitive disassociation to the risk of harm for others. All mixed in some quagmire with a libertarian, chaotic death cult that has been the government. Watching the collaborative spirit reminiscent of the Blitz in the early days of the contagion descend into a hardening of hearts towards the vulnerable, triggered by Cumming's jaunt for an eye test, was, to put it mildly, difficult.
Did we see a re-examination of moral & political philosophy bringing to light a debate on the nature of the social contract to the individual's relation to freedom & law? Did Rousseau's power of collective interest win out? Not on your nelly. We saw newspaper execs desperate for sales whip the population into a 'freedom' drive. Maybe Locke was wrong in his assertion that in the state of nature, individuals would be constrained morally by the law of nature in which the person has the
power... to preserve his property; that is, his life, liberty and estate against the injuries and attempts of other men. John Locke
For equity & the safety of the vulnerable (well anyone really, Long Covid is Russian roulette) institutional responsibility is key. Hell, this is why legislation exists. It is worth remembering that any legal change on public health has initially been met with an outcry & then melts into normality, with us wondering with hindsight how on earth we partook of the social norms such as drink driving, smoking & no seatbelts.
This is why we campaign for fundamental legal change. It is also why we rethought our legal structure from an intended CIC (Community Interest Company) to a model based on social justice. The regulations for charities & CICs to campaign or comment on government policy & legislation are pretty draconian (handy!) & essentially anti-democratic - think of the furoughray with the RSPB. We did not see how we could uphold our responsibilities to the community & be a moral & effective force that drove fundamental change. For example, CICs cannot engage in activities that are connected to:
(a) the promotion of, or the opposition to, changes in - (i) any law applicable in GB or elsewhere; or the or (ii) the policy adopted by any governmental or public authority in relation to any matter; (b) the promotion of, or the opposition (including the promotion of changes) to, the policy which any governmental or public authority proposes to adopt in relation to any matter
Eye-watering! Talk about the violence of a false neutrality. We have seen the issues that charities face in attempting to stay neutral. In essence, an alienation happens between the organisation and the patient because the organisation aligns itself with authorities that don't want to hear to cold, hard truth and people want to stay on their good side & not be 'unreasonable'. There is automatic silencing if an organisation cannot oppose or protest the government or a public authority policy. This is especially dangerous when the people represented by an organisation are disabled & vulnerable.
What if we could have a couple of those magic beans would we wish for?
Enforceable Health & Safety regulations
A Ventilation Bill for Public Spaces
Long Covid to be classified as an Occupational Disease, with compensation
Legal action for the consequences of harm, mistreatment & medical negligence
Automatic EHCPs for children & people with ME/LC
Long Covid & ME/CFS automatically qualify for disability under the Equality Act (alongside HIV, Cancer & MS)
We have seen the State negate its responsibilities for those with infection-associated disease as they would much rather pretend it doesn't exist. Yet why is this? What kind of culture & associations have been weaved to create a blindfold of this magnitude? Let's investigate closer.
Investigate
This could be condensed to one sentence - research the f*ck out of Long Covid & ME using a biomedical model - or in other words, actually look inside our bodies to find out what's going wrong so we can treat it. It's unbelievably hard to comprehend how hard this seems to be in the medical & scientific communities. Yet even from Classical times, Drs have gone on a rather massive detour, taking the scenic route, one could say, in relation to chronic disease. It's hard to treat, one's ego & reputation suffer, there's no money in it - enough said. We've been left with quackery, not science.
It is this avoidance (quick someone needs therapy & it's not us) that has created the political & cultural blindfold that allows people to fall through the net. If science doesn't have the answers, we don't have the epistemic authority for politicians or society to draw on. It's a confidence trick to ensure that a particular belief has authority and if our focus is not on an accurate scientific foundation we are screwed. We have seen this in the UK Covid Inquiry when Boris Johnson pulled on the 'science' that Long Covid is like Gulf War Syndrome and therefore not real, made up, a flim-flam illness of shirkers & malingerers that he could then ignore & not drive any policy (& money) too. Thanks, Professor Catastrophe aka Wessely (see related article).
This is why we advocate for Investigation. People must have a hope of recovery & a life. Yet we need this to follow a biomedical model, we've had enough questionnaires, crash diet drinks & needing to go and bathe in the forest. There are 3 key areas or the golden three as we like to call them, that need prioritisation:
Biomarkers
Pathophysiology
Pharmacological Treatment
We shouldn't necessarily need a biomarker or test to diagnose, many diseases that are seen as worthy don't, including Parkinson's, MS, Schizophrenia & Alzheimer’s. These are diagnosed with clinical judgement, yet the stigma associated with LC & ME means we need a biomarker to shift the paradigm from illnesses that have psychological & social causative factors to ones that is taken seriously. Away from hysteria lala land in other words.
This is connected to pathophysiology - which is why we need to understand and see (humans can be remarkably slow in taking seriously something they can't see) the disease process. Many illnesses that were classified or had the cultural perception of being psychological or hysteric disappeared from this camp when the pathophysiology was found- especially MS, Peptic Ulcer, Parkinson's & even AIDS (thanks psychiatry - not).
The call for intense research funding for Long Covid is growing. We saw the £100 million a year call from the Coronavirus APPG & the Long Covid Moonshot of £1 billion a year in the States. But this is a lot of money one, can here the seeds of doubt call. Yet this is peanuts to what the Government wasted in the pandemic & the economic cost of Long Covid which is so big it's hard to comprehend. Oliver Curtis of Healthonomix adapted the economic analysis of Prof David Cutler of Harvard to the UK (update analysis here). The figures are a mind-numbing £126 billion in reduced quality of life; £268 billion on reduced earnings & £145 billion on increased spending on medical care. A total of £534 billion.
Therefore, if we combine the costs across the three areas, the total cost of Long-Covid in the UK is estimated at £534 Billion or about 17% of 2021 UK GDP. Roughly 23% of the total cost is attributed to lost quality of life. We use the NICE WTP threshold to estimate how much a year in perfect health is worth, however assigning a greater cost here (Cutler uses a value of $100,000) will lead to far greater costs. Oliver Curtis
In summary, how can we not afford to investigate Long Covid? This is world-changing, society-destroying f*ckwittery.
Ventilate
So, we have two legs of the stool, we are starting to get a solid framework for citizens; there is the why & the social contract. Now we need to address the before - the prevention - ventilation. We have moved light years away from the belief that we just needed to get Covid once and we'd have lifelong immunity like other viruses such as measles or chickenpox. This was the real Achilles heel of the UK strategy - we didn't follow a coronavirus pandemic strategy, we played around with herd immunity. As I write this the CMO of the UK Chris Whitty is giving evidence at the Covid Inquiry. Prof Anthony Costello of UCL points out
Instead, we are left in a chronic dystopia where we are left with perpetual reinfection that is persistently damaging our bodies. No one knows what 20 - 30+ Covid infections are going to do to us. How is a lifetime of Covid infections going to affect the lives of those born into the pandemic? And we haven't even touched on the vulnerable who are supposed to manage their safety & risk in a world that denies & demeans them into oblivion.
Yet we have the technology, we have a way out. In essence, we are seeing the same scenario play out with climate denial - we know the science, we have the technology, but vested interests & agendas mixed with denial, laziness & self-interest mean we are on a fast track to Apocalypse Now.
Image credit: RedJohn9923
Engineering & systems thinking is a way out of the pandemic. We see this with masking science & with ventilation. Yet it is vital to connect ventilation to legislation - it is not enough for each employer to feel the moral imperative & act according to conscience. We are in an amoral capitalist market where the bottom line is often more important than initial investment for long-term gains. That is why a Ventilation Bill is important so enforceable regulation is in the game. The bones of this bill would be at least:
A regulated max CO2 level of 800ppm
Immediate upgrading of ventilation and air filtration
Government ventilation grants for indoor public spaces
An open access online monitoring system with a RAG (Red, Amber, Green) score
Visible CO2 monitors
More details on this can be found in the letter to Steve Barclay that I wrote for Long Covid Support & was co-signed by over 20 organisations.
And before people get their knickers in a twist about 'freedom', having regulatory legislation is not uncommon, it affects nearly every part of our lives from the houses we live in with Building Regs; to the cars we drive; health & safety at work; the coffee we pick up etc. Regulation has been a key factor in creating a civilised & compassionate world often due to the organisation of the Trade Union movement. Without regulation, we'd all be at the mercy of the big man & I'd prefer not to go back to children down the pit, no holidays, sick pay & a general disregard for life.
We have a cultural dearth of any real understanding of political or moral philosophy in everyday culture. So we don't often have the vocabulary to discuss the relationship of freedom to law. Even the basic concepts are misunderstood, including anarchism, socialism and even what fascism is. Maybe we need Ursula Le Guin's 'The Dispossessed' (that dives into the tension between mutual aid & decentralization) on the school curriculum to be able to critically debate the dilemma that's haunted political philosophy since Rousseau - the individual against society's broader needs.
Yet Ventilation has very little implication for action from the individual as it's something we would barely notice. It's funny for those who scream 'freedom' from vaccines, masks & anything that will never mention ventilation - yet it's a game-changer - it allows us all more freedom & at the expense of no one. It's the way to a cleaner, greener world with indoor air quality central to a compassionate ecology.
It's not only infection that is controlled with good IAQ. Even though that would be enough as the Royal Academy of Engineering report commissioned by ex-CSO Sir Patrick Vallance states
In the event of a future, severe, influenza-like pandemic in the next 60 years, the total cost of inaction could be up to £1.3 trillion (discounted 2020). Furthermore, this impact is expected to grow over time, as GDP, population, and life expectancy are all projected to increase.
It's a situation where everyone wins as there are other unilateral benefits:
reduction of asthma, allergies & disease
reduction of air pollution
reduction of internal pollution from chemicals, mould etc
equity & accessibility for the vulnerable & disabled
prevention of Long Covid & infection-associated chronic illness
safe learning & work conditions
increase in test scores, cognitive ability & brain health
future-proofing
a compassionate & ecological environmental ethos
Educate
So, the last leg of our stool to prevent a wonky foundation is Education. This needs to take several forms as deep cultural change is needed:
Infection-associated chronic illness from a biomedical perspective needs to be extensively taught in medical schools.
Mandatory Professional Development for HCPs
Public Health Messaging Campaign
It is shocking & heartbreaking that most Drs have a poor knowledge of ME/CFS & receive little to no training in medical school. Combined with the psychiatric agenda that has psychologised ME/CFS we are left with a dangerous situation for patients. This has been shown in academic research (see Hng, Timbol, Pheby, Muirhead, Reid Froehlich, Geraghty, Stenhoff). Deep trauma & epistemic injustice are widely experienced in the patient community. Ask any ME/CFS patient if asked is likely to tell a story that will break your heart.
There is movement on this, from 2024-25 ME/CFS will be taught to all medical undergraduates as it is being included on the Medical Licensing Assessment content map. But the concern remains as to whether it will be of a high enough standard. The stigma towards pwME is violent & pervasive. Who will be teaching & devising this curriculum? Will it be psychologists who will reinforce the epistemic injustice & cleave to the old false paradigm of psychosocial factors? It is being referred to in the MLA as CFS, the old wide as a desert, catch-all term that minimises the condition & was devised for this purpose by the (B)PS. Which isn't reassuring.
If anyone needs access to high-quality resources for ME/CFS or you need to refer your Dr please look at the ME/CFS Medical Education Campaign resources page which is excellent.
We can see in the recent research & webinar from Dr Emma Portch and team at Bournemouth University that the impact of the establishment views of ME/CFS has had a knock-on on effect on the patient experience of healthcare for those with Long Covid. The summary and implications of their findings state that minimisation & delegitimisation are still happening & late or refusal to diagnose can be problematic.
Conclusion
To conclude we need a radical sea change, a blowing of the lifeboat whistle, and an urgent call to action to ensure that people with Long Covid & ME receive the civilised standard of care automatically assured to others with serious disease. We saw an abnegation of responsibility to those with Long Covid during the pandemic from every level of public institution - politicians to the CMO & the public health bodies such as JCVI & UKHSA. This has been enforced by the failure of an effective research drive into Long Covid. Add the squeeze by the government agenda to crack down on the massive rise in those who can't work through disability & benefit cuts and we have a shipwreck made of people's lives. In other words, we are an Inconvenient Truth that it's easier to look away from. Yet with the numbers affected and the clear causative connection between Covid & long-term sequalae, we have a chance to improve things, but we are still a long way from a safe harbour.
Image: Das Boot
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