Do no harm
Part 2 - ME/CFS
In Part 1, I explored how Big Pharma, together with the billionaires who fund gender clinics, encourage children who are troubled by the changes they are going through at puberty to hate their bodies. Instead of helping them to accept the changes their bodies are going through, they are pressuring them to undergo body modification and endure the resulting long term health problems.
The response to ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) has been different, based on psychology rather than drugs and surgery. Yet the outcome, a ‘treatment’ that doesn’t address the underlying cause and causes harm, is the same. And, again, it is the distorted priorities of funders that are responsible.
Not ‘all in the mind’
ME/CFS is a disabling illness which affects some 0.4% of the UK population. Its symptoms include debilitating fatigue worsened by activity, post-exertional malaise, unrefreshing sleep, and cognitive dysfunction. About a quarter of sufferers are severely affected and bedbound.
So far, no single determining cause of ME/CFS has been discovered, limiting the attractiveness of the illness as a potentially profitable opportunity for research funding by Big Pharma. Instead, a different source of funding, a government keen to cut back on welfare payments, has pushed a psychology-based treatment protocol on patients - a protocol for which there is no evidence of long term benefit, and some evidence of harm.
The only time Big Pharma poured significant amounts of money into ME/CFS research was around 2010 when it attempted to replicate a study that seemed to implicate a particular mouse retrovirus, XMRV. That study, led by Judy Mikovits (who later achieved notoriety as a leading advocate of extreme Covid conspiracy theories), was retracted in 2011 when its findings were found to have been distorted by laboratory contamination. Big Pharma funding of ME/CFS research then dried up.
The lack of a proven single organic cause opened a gap that was filled by psychologists, who put forward the idea that there was no physical basis for the illness - that it was ‘all in the mind.’ Three of those psychologists, Professors Peter White, Trudie Chalder, and Michael Sharpe, led a large scale trial (PACE) which recommended two techniques, Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) as the most appropriate treatments for ME/CFS. The PACE trial was funded by UK government agencies, including the Department of Work and Pensions (the government department responsible for distributing disability benefits).
Patients were critical. Although some of them experienced CBT as helping with the depression that was a frequent consequence of the debilitating disabilities brought about by the illness, few thought it helped with the illness itself. Most found that GET worsened, rather than improved, their condition. Those who were severely affected were particularly concerned that doctors would ignore the fact that the PACE trial design excluded them. They feared that they would be forced into activity that would almost certainly make their condition worse, as a condition of entitlement to disability benefits.
It was hard to avoid the conclusion that the government, committed as it was to reducing welfare expenditure, chose to fund researchers who it knew would reinforce a cruel belief, promoted in some media, that the disability of ME/CFS sufferers was not real. Political dismissal of disabling medical conditions in order to cut back on disability benefit entitlement persists. The UK Government’s Work and Pensions Secretary repeated it in a recent interview:
“There is a real risk now that we are labelling the normal ups and downs of human life as medical conditions which then actually hold people back, and, ultimately, drive up the benefit bill.”
(Mel Stride, Telegraph 20 March 2024)
Determined efforts by academic researchers and ME/CFS patients revealed numerous flaws in the PACE study. Their published results, here, here and here, concluded that the quality of the science was poor, and that PACE’s recommended treatment protocols resulted in no long-term benefit to patients.
“Many people, including many very sick people, had to invest immense effort and withstand vitriol to use science to correct these mistakes … Rectifying PACE will take more than exposing its flaws. The lingering doubt it has cast on this illness will only be fully dispersed when we’ve finally figured out what’s really going on with the disease. For that, we need to invest in some serious, good science.”
(Julie Rehmeyer, Bad Science misled millions with CFS. Here’s how we fought back, Stat, 21 Sep 2015)
In 2021, NICE (the National Institute of Health and Care Excellence) responded to the mounting evidence that the PACE trial results were flawed. It abandoned its previous recommendation that ME/CFS healthcare should be based on GET and CBT, and suggested instead a more nuanced approach, respecting differences in the severity of the illness. Despite this change of tack, the discredited belief lives on, and many healthcare practitioners continue to mistreat their patients.
“Despite an overwhelming weight of evidence, the old believers … have continued to try and justify their model, obliging NICE to publish a strong refutation. Protected by powerful friends in the media, they could breathe life into their hypothesis long after it was debunked … This is not how science should work.”
(George Monbiot, ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal, Guardian, 12 March 2024)
Next time - different feminist responses to ME/CFS (a disease that affects more females than males).