The Guardian has published a new article on the disease myalgic encephalomyelitis (ME). However, the original copy was littered with errors. Moreover, it landed on the side of discredited medical professionals and their supposed treatments – yet failed to mention their own conflicts of interest. Overall, the Guardian‘s article was yet another hit piece on a community whom the medical establishment, state, and society have abused for decades.
ME: not all in people’s heads
Some people refer to ME as chronic fatigue syndrome (CFS). It is a debilitating and poorly-treated chronic, systemic neuroimmune disease that affects every aspect of the patient’s lives. You can read more about ME symptoms here. The disease has been at the centre of various scandals for decades. These include medical professionals saying it was a psychological illness – that is, that it’s ‘all in people’s heads’.
Recently, one scandal involved the National Institute for Clinical Excellence (NICE). The Canary reported extensively on this. Essentially, in 2021 NICE was going to update its treatment guidelines for ME. It hadn’t done this since 2007. The old guidelines recommended doctors treat people living with ME with graded exercise therapy (GET) and cognitive behavioural therapy (CBT). Patients and medical professionals generally say GET and CBT are either harmful or ineffective in ME.
So, NICE’s new guidelines removed these – but not without delays, lobbying by proponents of the discredited treatments, and the need for protests. All this caused people living with ME anger and distress. However, some medical professionals seem hell-bent on claiming GET and CBT do work.
A new ‘study’, allegedly
The Guardian reported on a new study that claim’s NICE’s guidelines are flawed. This research calls into question the guidelines and the processes NICE followed. The study claims that NICE’s:
U-turn in recommendations from the previous 2007 guideline is controversial.
It then lists various reasons why. The study overview concludes:
that the dissonance between this and the previous guideline was the result of deviating from usual scientific standards of the NICE process. The consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability.
So, the Guardian reported on this. However, the article was shoddy, biased, and filled with errors – so much so, the Guardian had to correct parts of it.
The Guardian‘s latest on ME: littered with errors
First, before it was updated the original Guardian article was littered with both errors and bad reportage. For example:
- It said “25,000 people in the UK” live with ME – it is actually at least 250,000, if not higher. This was a clear typo.
- It spoke as if CFS and ME are two different conditions, but then said ME is “also called CFS”.
- The symptoms it lists did not include a hallmark symptom, which is post-exertional malaise (PEM) – a worsening of symptoms.
However, these were not the main problems with the Guardian‘s original ME article.
First, its use of language went against both campaigners’ and charities’ advice on ME. The Guardian used “chronic fatigue” in both the original headline and opening paragraph. This is not ME: chronic fatigue is a symptom, not an illness. The Guardian knows this – as on other occasions it calls ME ‘ME’, or ‘chronic fatigue syndrome’. It has since updated the article to use ‘ME/CFS’ and ‘chronic fatigue syndrome’.
The article also used a picture of a woman holding her head as its main image. Again, this is something patients and campaigners have said the media should not do, as it undermines the severity of the illness. Moreover, the entire article managed not once to include a patient’s voice – but did include a doctor interviewee claiming:
Many patients are sensitive to the inference psychological factors such as stress may contribute to the condition and dismiss psychological treatments such as cognitive behavioural therapy
This is something the majority of patients would argue is false – and gaslighting.
Hiding conflicts of interest?
Perhaps most damningly, though, and the Guardian failed to mention that the main doctor it quoted on the new study had a glaring conflict of interest.
It wrote that:
One of the study’s lead authors, Prof Trudie Chalder from the psychiatry department at King’s College London, said: “The decision to change the guideline has had a direct effect on doctors’ and therapists’ ability to treat patients. Services are no longer able to provide a full range of evidence-based therapeutic interventions.
Of course, what the Guardian failed to mention is Chalder was a researcher on the original study that said GET and CBT worked on ME patients – the study NICE removed from its guidelines.
The Guardian also failed to mention that four of the new paper’s other authors were also researchers on the original study – Peter White, Michael Sharpe, Brian Angus, and Maurice Murphy. The Guardian also failed to mention that another author on the new paper, Simon Wessely, was also involved in the original study on GET and CBT – providing feedback on it.
At best, the litany of errors and bad reporting in the article could be put down to lackadaisical editorial standards. At worst, some may view the Guardian article as intentional gaslighting of people living with ME.
However, the biggest issue with all this was not the Guardian‘s coverage, but the new study itself.
Psychologising the physical
The original study Chalder, White, and Sharpe worked on was called the PACE Trial. The Canary has reported extensively on how:
- The study was flawed.
- The Department for Work and Pensions (DWP) part-funded it – with one MP saying this was intended to help cut people’s benefits.
- Researchers including Chalder, White, and Sharpe declared conflicts of interest due to working the private insurance industry.
- Several new re-evaluations of PACE Trial data have found the claimed results to be wrong.
Overall, patients, advocates, politicians, and many medical professionals believe the PACE Trial was a con to keep ME as a psychological illness, and to deny people benefits and private health insurance. So, it is of little wonder that Chalder, Sharpe, White, Wessely, and others continue to push back against the discreditation of their research. As the Canary previously wrote:
One prominent ME doctor called… [the PACE Trial] “scientific and financial fraud”. An MP said it was potentially one of the “biggest medical scandals of the 21st century”.
This new study is the latest attempt to keep ME psychological. It’s not the only thing doing this, either. Proponents of the psychologisation of ME also privately lobbied NICE to keep its old guidelines – as the Canary previously revealed.
Flawed studies, flawed guidelines
However, these medical professionals’ latest attempt to maintain their discredited status quo is limp at best – and at worst, once again catastrophically flawed. As ME researcher Dr Keith Geraghty wrote on Twitter:
For some time now, I have been saying that Evidence-Based Medicine is as much a ‘political process’ as a ‘scientific’ one: above we see authors unhappy with their star RCTs [randomised control trials] being downgraded as weak evidence, challenging the procedures of an independent NICE treatment review.
…49 author names on the 2023 ‘NICE Challenge Paper’, many wedded to a CBT Model of ME/CFS… are in fact a lobby group, and many of their points of challenge to NICE require robust and careful rebuttal, as many are factually incorrect.
NICE also robustly hit back at the new study’s claims, telling the Guardian:
We reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that Nice has not followed international standards for guideline development which has led to guidance that could harm rather than help patients. In developing our guideline, as well as bringing together the best available scientific evidence, we also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart.
However, none of this should detract from the fact that the new NICE guidelines still have numerous issues. You can read the Canary‘s full analysis of them here. Overall, though, and as we previously wrote:
Yes, NICE has removed GET. On paper, this looks like a breakthrough, but in practice it’s far from that – and it really changes very little. Doctors could well still cause patients harm. Justice for those already harmed seems a long way off. And nothing NICE has done will begin to change the deeply-held views among some medical professionals that ME is ‘all in people’s heads’.
So, with NICE guidelines still flawed, some medical professionals actively working against patients, and the media either toeing the line or making myriad errors in its reporting, what are people living with ME to do?
ME: fight the good fight
Patients, their families and loved ones, and advocates are used to media coverage like the Guardian‘s. They’re also used to the institutionalised gaslighting, discrimination, and negativity from medical professionals. People living with ME are also used to most of the rest of society, and the system and state, isolating them.
More than this, however, what the ME community is well used to is standing up for itself. People living with this disease will continue to fight for their rights, they’ll continue to push back against the psychologisation of their illness, and they’ll do all that while supporting each other, too. No amount of propaganda from medical professionals and the media will change that.
Featured image via the Guardian – screengrab
