David J Black

The tragedy of the putative ME/CFS scandal as the revelations following the PACE controversy emerged, was that, for a time, things looked rather promising in Scotland, where we are capable of doing things differently when we have a mind to.

A Scottish Parliament Cross Party Group on ME/CFS had been formed as early as 2000. There was some awareness of the problem after a 1980 ‘mystery outbreak’ in Ayrshire, Dunbartonshire, and Stirlingshire written up by Jane Dawson, technical editor of the British Heart Journal as ‘Royal Free Disease; Perplexity Continues’ (BMJ; February 1987).

In that case previously healthy individuals, mostly in their 30s and 40s, had presented with “an illness characterised by profound and chronic exhaustion”. Discounting McEvedy and Beard’s ‘hysteria’ thesis Dr Dawson cited Dr Melvin Ramsay, The Royal Free’s consultant physician in infectious diseases, a man much exasperated by the hysteria lobby.

A link between ME and organophosphate (OP) sheep dip emerged in a 1998 study in the Outer Hebrides in which 60 per cent of those suffering from ME had been in contact with OP sheep dip. In an area where sheep farming underpinned the local economy, and the incidence of ME was four times the national average, these findings indicated a clear organic aetiology for ME.

Scant parliamentary attention was paid to the OP issue until June 2015, when Labour MP Jessica Morden secured a 29-minute debate in which MPs of all parties gave accounts of the suffering of their constituents. One who knew whereof he spoke was Conservative Ian Liddell-Grainger. He had been a sheep farmer in Berwickshire, where ME is known as ‘dipper’s flu’. Even in Hansard, his anger seemed palpable. He effectively accused agriculture minister George Eustice of lying.

Mr Eustice, downplaying any link between organophosphates and ME, agreed that some farmers “associate their illness” with sheep dip, but otherwise hid behind a report by the Independent (sic) Committee on Toxicity which had concluded that “organophosphates - do not cause important long-term neurological toxicity in adults - if toxic effects on the nervous system do occur, they are minor and subtle”. Mr Liddell-Grainger replied: “I really must take issue with that; that is not the case. As (Jessica Morden) and I have already said, the Minister should set up a commission so that we can get to the bottom of the issue.”

The minister was unmoved: “The … evidence suggests that there is no long-term risk of clearly demonstrable peripheral neuropathy from exposure to organophosphates.” Who could blame him? It was the government which had made sheep dipping compulsory in 1976 using organophosphates, first developed as chemical warfare agents, and apparently a key ingredient of novichok. Clearly, our awkward friend Accountability might come into play here. A commission was, for reasons of naked political expediency, strictly out of the question.

Farmworkers, unaware of the hazards and any precautions they should have taken, were as lambs to the slaughter while the government inspectorate was instructed to get no closer to the dipping bath than 14 feet. The potential cost implications of a class-action settlement, had liability been established, would have been enormous. A cover-up was much better, and so it came to pass, despite this unequivocal evidence of an organic link with ME/CFS.

Perhaps, from the Westminster hothouse, the health problems of farmworkers in Scotland, Wales, and the Yorkshire moors seemed less than pressing. Besides, the matter, if scrutinised, might have revealed more about ME/CFS than officialdom cared to know. There were already sensitivities over GM crops and the hazards of the glyphosate based herbicide, Roundup, as promoted by US agribiotech giant Monsanto in the face of protests from environmentalists and health campaigners. An ME/CFS controversy on top of this would have been jolly inconvenient.

It was also evident that the triggers for ME/CFS were many and diverse, as suggested in Dr David Bell’s 1990 book The Disease of a Thousand Names, when it was known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). It was also classed as post-viral fatigue, since it frequently occurred after a viral infection, such as glandular fever, the Epstein Barr virus, or human herpes virus. There were also bacteriological pathways such as Lyme disease.

Yet a biopsychosocial explanation was preferred by Department of Work and Pensions bean counters, and no effort was spared to promote it, despite the World Health Organisation’s definition of the syndrome as neurological. Critics like Dr Margaret Cook, who had written a scathing 2003 article in The Scotsman, were shot down, a fawning press were kept onside, and advocates who knew, from experience, what they were talking about, were sidelined.

In Scotland there were glimmers of hope. In 2007, at an Edinburgh conference on ME it became evident that by no means all psychiatrists were adherents of the Wessely School, as Canadian academic and psychiatrist Dr Ellie Stein made clear: “It’s quite hard to watch millions of pounds being spent on a [PACE] study that will tell us nothing - I would never use the Wessely model of cognitive therapy.”

That same year a Holyrood ME/CFS Cross Party Group (CPG) noted ‘areas for action’, and in May 2012 after a successful reception in the Scottish Parliament, all seemed set fair. In May 2017 a determined young ME sufferer, Emma Shorter organised a ‘missing millions’ demonstration outside the Scottish Parliament. Those too ill to attend had relatives set out their shoes in front of the entrance. With this ‘ghost demonstration’ who could fail to be touched by the plight of thousands of hidden people whose lives had often completely ruined? For once, ME victims began to get some sympathetic press support, at least in Scotland.

Despite the momentum Holyrood’s CPG proceeded to fall apart A dispute flared between those who favoured an investigation specifically on ME as defined by the World Health Organisation, and those favouring the umbrella term ‘CFS’, an unscientific bullet-dodging term largely dreamt up by US healthcare insurance corporates keen to avoid payouts. The less scientific classification Chronic Fatigue Syndrome (CFS) also covers conditions such as pernicious anaemia or lupus, as well as ME, thus the broader categorisation would inevitably have undermined the investigation’s focus.

A vote was taken in which the ‘ME only’ faction won by 30 votes to 12. Unfortunately committee convenor Labour MSP Mary Fee didn’t agree, and resigned in protest on October 17, after which the group was wound up in disarray. One critic noted that Ms Fee, who herself suffered from lupus, had wished to include her own condition under the comprehensive ‘CFS’ classification which, if true, clearly makes a nonsense of the democratic process in Scotland.

A year later Emma Shorter addressed the Parliament’s Petitions Committee, backed by a 7,000-signature petition bemoaning the lack of biomedical research into ME/CFS and the failures of CBT and GET as treatments, as reflected in the proposed revised NICE guidelines of 2017 which would eventually come into force in 2021. But in Scotland much traction had been lost.

Back in the UK the PACE trial was debated in the House of Lords at the instance of the Countess of Mar, herself a victim of OP poisoning. Her views were succinct, “under-reporting of trials, as occurred in the PACE trial, is misconduct. Misreporting of clinical data leads to harm, wastes money and prevents scientific progress”.

Quoting Orwell she characterised the trial as giving “an appearance of solidity to pure wind”. There was a whiff of Emile Zola in her J’accuse list of the PACE investigators’ (allegedly) manipulated methodology. Only those fit enough to make it to hospital appointments, were included in the trial. The 25 per cent or so severely affected were to remain in their darkened rooms, playing no part in the £5 million study. The trial investigators, she stated, had changed the primary outcome measures with the intention of artificially inflating the ‘success’ of CBT and GET, their chosen ‘treatments’ – consequently they were guilty of scientific misconduct. The fact that much of this was being done with the collusion of UK civil servants and politicians might also suggest that the charge of ‘misconduct in public office’ should also be taken into account if and when a final reckoning comes.

To allege fraud, with or without the benefit of parliamentary privilege, or to raise questions of ‘scientific misconduct’ in the PACE trials would hardly satisfy the necessary legal tests in a court of law. There are a number of lesser deception and misrepresentation offences as well as those citing fraud, such as obtaining a financial advantage by deception, or false accounting, where misleading statistics may be in point, but each requires specific elements of proof, and the bar is set high. Yet the idea, at least in abstracto, is worth pondering.

So where might the investigation kick off? The McEvedy and Beard report, now over 50 years old, is a bit of a stretch, but how about an untruth uttered on air by Simon Wessely in a Channel 4 interview with Sheena MacDonald when he testily denied having had any involvement with the forcible removal of children with ME from the care of their parents. “I know nothing about these cases” he harrumphed, apparently forgetting his part in the notorious Ean Proctor case, which reads like a gothic horror novel.

The point at issue now, in anticipation of an oncoming tide of ME with the Long Covid crisis and the alleged discrediting of the £5m PACE trial, is that there appear to be so many inconsistencies with the manner in which this trial was procured and managed that a host of issues arise, including the possibility than an abuse of the public revenues may have occurred. One inconsistenciy was an attempt by Queen Mary University to conceal the data used in the trial. This was successfully challenged by an ME sufferer based in Australia who had asked the Information Commissioner’s Office to intervene. The university and the trial’s authors spent a large amount in legal fees fighting the ICO decision, but eventually had to concede.

Among those critical of the attempted cover-up was a former Editor of The British Medical Journal, Dr Richard Smith. “I fear that QMUL and King’s are defending the indefensible - like King Canute failing to stop a tide that is coming in fast.” Dr Smith referred to Edinburgh’s Professor of medical law and ethics, Alexander McCall Smith, who had spoken in favour of the criminalisation of research misconduct at a 2000 summit on that very subject.

“My memory is that [Professor McCall Smith] had two main arguments. Firstly, he argued that scientific fraud is really no different from financial fraud, which is a criminal offence, in that resources are misused. We might use the word stolen. Secondly, scientific fraud needs careful investigation and collection of evidence, procedures that are very familiar to the police and unfamiliar to university authorities. He might have added (and perhaps he did) that scientific fraud might do much more harm than financial fraud in that it could lead to global misunderstanding, including perhaps widespread use of ineffective and dangerous treatments.”

There are many reasons, besides the proper administration of justice, why a proper investigation into the long biopsychosocial stranglehold on ME/CFS should be thoroughly investigated now. Long Covid, for one thing, will increase the numbers of those suffering from the condition and we can no longer leave it to the assumed ‘expertise’ of a single faction whose credibility is in question.

The costs involved should arouse the interest not only of England’s Comptroller and Auditor General and Audit Scotland, but also of the Serious Fraud Office. We are also about to have a substantial release of evidence; in the late 1980s, a secret Medical Research Council file on ME/CFS was lodged in the government record office at Kew. That evidence is due to be opened up to public scrutiny in 2023. It could be something of a Pandora’s Box.

We might recall that in 2015 Labour MP Jessica Morden and Conservative Ian Liddell-Grainger suggested, in vain, to agriculture minister George Eustice that a commission should be established to investigate one of the recognised causes of ME/CFS, organophosphate poisoning.

Today, we need an augmented version, with the power to call witnesses and, where necessary, identify unlawful behaviour, maladministration, and anything else which lies behind the scandalous treatment of ME/CFS sufferers.

The sooner such a commission is established, the better.

David Black’s forthcoming book The Great Psycho Heist. Is the ‘biggest medical scandal of the 21st century’ about to go viral in the wake of Long Covid? is currently in preparation.