Read the first part of this article: Exhausting the exhausted – how employers and insurers cruelly add to the burden of Long Covid 

The daily number of Covid-19 deaths may have ceased to frighten most people, but the continuing threat of mass disability should be causing more alarm. At least 10% of Covid infections result in energy-limiting chronic illness (ELCI) and there are already an estimated 65 million* people suffering from Long Covid worldwide.

In May 2023, the Office for National Statistics published figures that showed that 2.5 million people in the UK were out of work due to long-term sickness – more than at any time since records began. The unprecedented rise, attributed to Long Covid, is mirrored in the US, where the figure could be as high as 4 million. 

Comparable statistics are not available for South Africa, although it has been estimated that 6.5 million South Africans could be affected by Long Covid. In the context of such an emergency, we can be proud of the world-leading research being done at Stellenbosch University by Professor Resia Pretorius into post-viral microclotting in Long Covid and similar endothelial dysfunction in ME. Her investigations show chronic patients suffering an “energy- and/or oxygen-deficit” problem on a cellular metabolic level resulting in appalling daily symptoms. Urgent pressure needs to be put on our government to stand up for the rights of the Sick and break the pattern of insurance industry-funded research being used to deny disability to those with “invisible illness”. 

Big Lies and medical scandals

We must go back more than five decades to understand how the venal back-scratching politics of one cabal of powerful men in the global medico-industrial complex led to what one British MP has called “one of the biggest medical scandals of the … century”.

In 1955 “Myalgic Encephalomyelitis” (ME) was the name given by Dr Melvin Ramsay on identifying a polio-like syndrome displayed by 292 staff with disabling fatigue at London’s Royal Free Hospital. There had been other outbreaks showing similar inflammation in the brain and spinal cord, such as those affecting 198 people at the Los Angeles County General Hospital in 1934, and another 488 in Iceland around 1948. 

In 1969 ME was uncontroversially defined as a neurological disease by the WHO. But in 1970, two young male psychiatrists re-examined Ramsay’s case notes and decided – simply because most of those affected were young female nurses – that a more likely explanation was “epidemic hysteria”. This would almost be hysterically funny, if it hadn’t become the medically accepted standpoint for the next 50 years.

McEvedy and Beard came to their conclusion without interviewing any of the patients themselves, many of whom remained too ill to work decades later. Their blatant misogyny subsequently consigned millions of patients to the dustbin of medicine. 

Big Lies such as “cigarettes are not harmful” or “climate change is not real” serve a potent financial purpose. In the era of Long Covid, vested interests continue to bolster the discredited theory that energy-limiting diseases such as ME (aka Chronic Fatigue Syndrome) are “all in your head” – despite its patent absurdity in the face of overwhelming scientific evidence.

Sir Simon Wessely, former president of the Royal College of Psychiatrists and current non-executive director on the board of NHS England, has made a career out of “psychologising” post-infectious energy-limiting conditions. He popularised the renaming of Myalgic Encephalomyelitis as the vaguer American term Chronic Fatigue Syndrome in the 1980s, and recast it as a mental health issue. 

The biopsychosocial (BPS) model favoured by Wessely has frequently been applied to other illnesses with Medically Unexplained Symptoms that are now understood to have an organic cause:

• Peptic ulcer was thought to be caused by stress until the discovery of bacterium Helicobacter pylori in 1983.
• In 2022, Gulf War Illness– which 20 years ago Wessely described as a “syndrome” brought on by “anxiety” – was proved to be caused by exposure to sarin gas, to which a quarter of veterans became vulnerable due to a genetic variant.
• Also last year, Epstein-Barr virus was discovered to be the cause of Multiple Sclerosis– which had been called “hysterical paralysis” right up until the invention of the CAT scan made demyelination of the brain visible.

But by the 1990s, the “Wessely School” was dominating the field of ME/CFS in the UK. Their insistence on a psychological rather than physiological origin for the disease was most convenient for both governments and medical insurance companies seeking to avoid paying out disability benefits. As a result, psychologically focussed research continued to be well funded, whereas other applications proposing to study neuroinflammation or metabolic and immune dysfunction were turned down.

Before the effects of the pandemic even became apparent, the disease burden of ME in the US was already twice that of HIV/Aids and over half of breast cancer, yet only received 7% of commensurate National Institute of Health funding.

Tellingly however, although authorities and medical insurers continue to insist that energy-limiting chronic illness has a psychogenic origin, all around the world people with ME are still banned from donating blood – a huge red flag.

In evidence to the UK Parliament, Professor Emeritus of Medicinal Chemistry at the University of Sunderland Malcolm Hooper definitively described ME as “an inflammatory autoimmune disorder that progresses to a complex multisystem neuro-endocrine-immuno-microvascular disease with cardiac involvement”. Notably, ME can have a relapsing-remitting or progressive pattern, like MS, but is five times as prevalent.

Professor Hooper attested that global medical insurance giant Unum reported in 1993 that ME/CFS came second in the list of their five most expensive chronic conditions, three places above Aids. Their “CFS Management Plan” stated: “Unum stands to lose millions if we do not move quickly to address this increasing problem.”

In 2001, a research conference was assembled in Oxford titled Malingering and Illness Deception. Unum vice-president John LoCascio was present and many of the conference participants had received funding from the insurance company, including Simon Wessely and the Chief Medical Officer of the UK Department for Work & Pensions (DWP), Mansel Aylward. Aylward was subsequently responsible for manipulating the BPS model to justify UK welfare reforms scrapping Incapacity Benefit and Disability Living Allowance, and replacing them with cruel and insidious Work Capability Assessment.

In 2003, Unum was fined $31.7-million in a class action in California for running “disability denial factories”. In 2005, Unum was accused of being “an outlaw company … that for years has operated in an illegal fashion” by California insurance commissioner John Garamendi, when it was charged with more than 25 violations of state law and fined $8-million. By 2006, the state insurance commissioners of 48 American states approved a settlement that required Unum to reconsider 200,000 claims and to pay another $15-million in fines.

In 2004, following his retirement from the DWP, Mansel Aylward was appointed as Director at the £1.6-million Unum Provident Centre for Psychosocial and Disability Research at Cardiff University (and subsequently knighted). In 2007, a Yale Law Professor exposed the Unum/Provident Scandal of benefit denials in the US and BBC News reported that the British government was being advised by an American insurance company with a reputation for “racketeering”. 

In 2008 an exposé in the The Guardian highlighted the work of Professor Jonathan Rutherford revealing how Unum had built influence to undermine the UK state sickness benefits system to boost sales of private disability insurance. Yet Unum was just one of 10 insurance companies cited by Professor Hooper in his 2007 testimony to Parliament demonstrating how the eminent psychiatrists and DWP officials they funded as consultants showed “blatant conflict of interest”.

The infamous PACE trial

The collusion reached an apex in the infamous PACE trial, a £5-million research project partly funded by the UK Department for Works and Pensions. Principal investigator Michael Sharpe, a member of the Wessely School, did not disclose to PACE trial participants that he was a paid adviser to Unum.

Results published in 2011 seemed to prove the efficacy of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) in treating ME/CFS. But worldwide, thousands of people whose “mild” ME became “severe” following GET, leaving them permanently bedbound, expressed outrage online. 

In 2016, heroic efforts of patient advocates and citizen scientists to release the full data exposed egregious flaws in the findings, such as changing criteria for recovery halfway through the trial.

More than 100 researchers and clinicians signed an open letter to The Lancet requesting an independent reevaluation of the study. At a debate in the House of Commons in 2018, MP Carol Monaghan stated that “when the full details of the PACE trial become known, it will be considered one of the biggest medical scandals of the 21st century”.

The almost total media silence on such a scoop is perhaps even more sinister. Professor Hooper and others have suggested that, in the UK, it may have much to do with the fact that the Science Media Centre, a supposedly independent body tasked with briefing the press on scientific research, was influenced by board member Sir Simon Wessely: “Editors of broadsheet newspapers have confirmed that editorial policy will permit them only to publish items about ME/CFS that come from the SMC.” 

Journalists who challenge Wessely’s ideas in print tend to lose their jobs.

Righting the wrongs and wronging the rights

In 2021, after an enormous effort by patient advocates and allies, the UK National Institute for Health and Care Excellence finally updated their guidelines banning GET as harmful for people with ME. But after 50 years’ neglect, there is still no effective medication proven to mitigate their gruelling daily symptoms. 

Psychological therapy such as CBT is still the standard treatment offered to people diagnosed with ME around the world. 

In South Africa, insurance companies continue to demand inappropriate psych assessments from people with Long Covid. Globally, the medical insurance industry continues their deliberate ploy of exhausting people with energy-limiting diseases into abandoning their disability claims, raking in millions more profits for shareholders.

Thanks to half a century of being painted as “shirkers and scroungers”, people disabled by energy-limiting chronic illness have to suffer stigma as well as their “catastrophic” symptoms. These patients are enduring disdain and dismissal similar to people living with HIV 40 years ago, but with a far poorer quality of life than most chronic conditions. 

On top of all that, insurance companies scamming the Sick are kicking us when we’re down. 

On 11th July, just as this article was about to be posted, The Guardian published a piece titled “ME/CFS guidance discouraging exercise is flawed, say researchers”, arguably a blatant attempt by Wessely School proponents of the BPS brigade to mount a rearguard action protecting their reputations, their vested interests and their insurance company masters’ bottom line. 

A luta continua. DM

*This number of 65 million is based on a conservative estimate of one in 10 of all Covid-19 infections producing long-term post-viral complications. Recent studies published by the CDC and The Lancet have cited prevalence of between one in five (19%) and one in two  (45%). Around half of Long Covid patients meet the criteria for a diagnosis of ME. Please wear a mask in unventilated spaces.

This piece is indebted to the scholarship and spoons of Margaret Williams, Mo Stewart, Catherine Hale and Jo Hunt.