The Guardian has thrown the ME community under the bus, using bias and misinformation

The Guardian latest article on ME CFS
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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:

Read on...

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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:

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

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  • Show Comments
    1. That’s something I never considered before: the incentive for vested interests (insurance, government, employers) to push “psychological” causes for disease. I am myself in a battle with my GP for having an array of symptoms being properly investigated. According to them, it’s stress. But stress to explain disease is pernicious since it cannot be discounted, unlike, say, electrolyte imbalance, vitamin deficiency or thyroid dysfunction: even if you go through cbt or make changes to your lifestyle and the symptoms persist, it can always be explained by you not doing enough, or not doing it the right way, If you’re still ill. And the effects on family relations can really suffer from it: if stress is what apparently makes me ill, and the main stressful thing in my life is my kids… It just breed resentment and even hostility! How can one love the people who, according to medical practitioners, make one severely ill? The psychologisation of illness needs to get chucked in the bin with bloodletting and thalidomide.

    2. A commentator suggests the Canary also have a vested interest. What might this be?

      It was good to read your criticism of the Guardian article. I’ll send a letter to the Guardian but unlikely to get printed.

      My daughter is 39. Has severe ME. Has really struggled but by applying strict pacing to her activities and joining an internet community of people who also practice Breathworks to help with the pain is in a much better place today.
      That the Guardian failed to talk even to ME Association and people living with ME is truly biased journalism. And condemns people like my daughter to prejudice (one GP in particular) and insufficient care support.

    3. The approach of Long Covid is no doubt behind this as insurance companies and the DWP prepare to deny its existence in order to avoid paying out. How wonderful it would be, someone must have mused, if only those techniques which used to work so well for ME denial till they were discredited could be resurrected and deployed against the growing army of Long Covid sufferers. What a lovely little earner that could be, eh? This particular shabby attempt at illness denial seems not to be working but there’ll no doubt be more and shabbier efforts to come – there’s too much money at stake here for it to be otherwise.

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