The Media’s Inaccurate and Biased Reporting of ME

Another example of all that’s wrong with the media’s reporting of ME appeared in the press this morning (14/01/2015), no doubt disseminated by our ‘friends’ at the Science Media Centre. Apparently exercise helps improve people with ME, no surprise that this ‘evidence’ is provided by the usual suspects at King’s College, led by Trudie Chandler on this occasion1. You’d think the media might have made the connection that 90% of the ‘research’ claiming the likes of CBT and GET can improve/cure sufferers comes from the same source, using the same flawed methodology but that’s beyond the wit of your standard compliant and lazy British journalist. The original article appears in The Lancet Psychiatry, so no possible bias towards there being a psychogenic explanation for ME, and follows on from the notoriously flawed PACE trial(2,3).

Media people, self-reported ‘improvement’ is not an objective measure of actual improvement, patients have a tendency to tell medics what they think they want to hear, however useless the therapy in question may be, and there are few ‘treatments’ more useless than CBT and GET. Even if you take the reported improvement at face value, moving from the fitness level of a 90 year old to that of an 88 year old really isn’t a stunning achievement.

On the plus side it’s a relief to see that The Telegraph4 with it’s headline ‘Gentle exercise is the best tonic for yuppie flu’* (yuppie flu? Seriously?!), has finally made it out of the 1930s and into the 1980s. We also like the use of the word tonic, that’s what we little ME sufferers need, a pat on the head, a nice bit of gentle exercise and a tonic, then all will be tickety boo (to continue the archaic language theme). At least the Guardian put the story in its Society section5; apparently well aware it couldn’t be classified as a Health or Science story, of course it should be in the section labelled Fiction. We cannot however, commend their choice of image to illustrate the piece, a man yomping across the moors, how delightfully inappropriate nay offensive, in their defence we don’t think even the study’s authors are recommending a 20 mile yomp as a cure for ME.

The Independent’s headline isn’t much better, ‘Sufferers of chronic fatigue syndrome can benefit from exercise’6. We could ignore it, after all we suffer from ME not CFS, but they clearly conflate the two, using the ‘also known as’ trope. Excuse me Indy but it’s ME, please desist using the CDC renaming designed to make all ME sufferers look like a bunch of malingerers who cannot be bothered to get out of bed in the morning. If the ‘research’ comes from the same team that brought you the impressively flawed PACE study, then Mr or Mrs Journalist, it can be ignored, especially if it involves idiotic, non-scientific terms like ‘reduction in fear avoidance beliefs’. There is no such thing as a fear avoidance belief, you can believe in the Loch Ness Monster and God but not fear avoidance, it is another psychobabble non-thing thought up by the Wessely School to annoy ME sufferers, good job by the way as it is very, very annoying. Many ME patients become severely ill due to lack of fear avoidance, pushing themselves rather than listening to their bodies and resting, so use of such a term is inaccurate and nasty.

One of ME’s primary symptoms is intolerance to exercise, if exercise makes you feel better, you haven’t got ME, full stop.

The Independent’s article also states that CBT and GET were ‘the most effective treatments for CFS’, compared to what exactly? As anyone with the misfortune to suffer from ME knows, there are no treatments for the disease, we can’t choose between CBT and GET or an effective drug like levodopa (used for treating the motor symptoms of Parkinson’s disease); in the UK, CBT and GET are it, there is no other therapy offered. Part of the reason we don’t have an effective drug is that for the past 30 years any funding, admittedly limited as the government doesn’t see the health of 250,000 ME sufferers as a priority, has gone into researching psycho-nonsense like CBT and GET. Fortunately, following successful Phase I and II trials7, the Norwegians are conducting Phase III trials of the monoclonal antibody drug Rituximab. If the results of this trial are successful there may finally be an effective drug treatment for ME, though no doubt the British media will continue its obsession with pushing CBT and GET, speaking of which, perhaps some CBT may be required to cure journalists of this unhealthy addiction.

To finish on a positive note, The Independent did acknowledge the condition is real. Thanks awfully Indy, the World Health Organisation has thought so since 1969 but it’s good to see the British media finally catching up8.

*This is the headline on the Telegraph’s title page that leads to the article.

8) https://med.stanford.edu/news/a;;-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html

24 thoughts on “The Media’s Inaccurate and Biased Reporting of ME

  1. theonlyfluffyone

    Wonder who they will blame when it’s implementation impacts on the bedbound….. a few dead ME sufferers will be hard to keep out of the media…. let alone the benefit cuts that will ensue from this… DWP funding.. what’s that all about… very shoddy behaviour… great blog as ever guys x

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    1. Utting Wolff Post author

      Thanks Chris. I’m sure they’ll do their best to keep any dead ME sufferers out of the media. Too right re the DWP funding, the first time they’ve funded such a trial, not at all dodgy…

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  2. Pingback: ill founded and unreliable research in today’s papers. | Carole...

  3. Mr Andrew Powley

    I find it very hard to understand how people can comment on something they have no clue about, but then again that’s the press for you. The people who wrote this deserve to suffer from this sometimes deadly illness it is not in their heads its an illness that takes somebody’s freedom away from them. I look after my partner who suffers from M.E and no I don’t claim to understand this illness even though I see it day in and day out, I just do the best for her so she knows I am there for her. I would invite these so called self proclaimed doctors ( press ) to spend a week looking after someone with this illness and only then will you understand and have the right to make a comment until then shut up and get the facts right. You make me so mad and sick and I am being polite.

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  4. bonny quandry

    Thank you for your blog. I keep wondering where are the friends and neighbours and families and charities who are supposed to support and advocate for us? They should be shouting in the streets until they are hoarse and their brains go numb so they can’t find words like ours do after a half hour visit talking to somebody, and waving banners until their arms ache like ours do from reaching for a full glass of water or something like that. Honestly.. what can we do to get people to rally against the things that make us worse and cause us more anxiety about our future?

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    1. Utting Wolff Post author

      I think the problem is, due to the sort of media reporting we saw yesterday and the stigma it helps attach to ME, many family and friends are too embarrassed to help us. I don’t think anyone in my family has raised a finger towards fundraising or advocacy and I know that’s not unusual in ME circles. I think we have to continue doing what we have been doing, helping to fund biomedical research and pointing out the flaws in the ‘research’ conducted by the psyches who’ve made a career out of dismissing our illness as a psychogenic condition.

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  5. Debra nice

    I am very Angry! At all these lie,s about ME! 😦 I have made myself worse with excise 😦 .. Come to my house & see what ME does to ME.. How dare they say what ME does to a person ! They don’t suffer like ME! I feel we should sue for the lie,s they tell on ME!.. Abuse! Abuse! That all I see with ME disease 😦 not help & care & compassion ! Just Abuse for ME:(…. Thank you for true ME warrior,s tell it how it is for ME people! ..

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    1. Utting Wolff Post author

      Debra, I’m sorry to hear you’re another ME sufferer who’s been made worse through exercise. I believe that in the future suing some of the psychiatrists involved in this flawed ‘research’ is a distinct possibility: it is indeed abuse.

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  6. pennyswift

    As a journalist I can understand how and why journos/media write articles such as this one. After all it is based on what appears at face value to be a reputable scientific report. There would not usually be a reason to get comment from other parties when reporting something like this… Only when one has been exposed to another side of the story – as I have been. It’s the researchers and powers at The Lancet Psychiatry who need their knuckles rapped. I am also not convinced that WHO accepts that ME and CFS are real. That is another article I will tackle soon.
    http://theargusreport.com/mecfs-research-uk-slams-lancet-psychiatry-report-advocating-exercise-for-chronic-fatigue-syndrome-sufferers/

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    1. Utting Wolff Post author

      It’s not so much getting comment from other parties Penny, rather the hope and expectation that the journalist would have enough scientitfic knowledge to enable them to assess the article and critique it. At present they seem to take the press release at face value and publish it without any critical evaluation. Then again, considering the controversy surrounding ME, a quick word with one of the charities before publishing would be nice. I think you make a fair point re WHO.

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      1. pennyswift

        Sorry – I can’t agree totally – even though I am totally “on your side” and hopefully in tune with a final goal. Bear with me please.
        The true journalist will REPORT and never critique… unless they are using a platform that allows them to comment and critique. We (old school journos) were trained to simply report the facts as given, and I believe this is true worldwide. So in the case of a research report published in a credible publication like The Lancet Psychiatry, there is no way that a reporter would critique unless that person has a similarly credible qualification. i.e. The person employed to write is a scientist, doctor or whatever. It would be asking for trouble otherwise. Also, there would not normally be a need to get additional comment … which I said in my initial comment.
        Even old school journos were not expected to have the scientific knowledge to assess articles. And today specialist reporters worldwide tend to have even less specific training for the job they are doing. So the expectation that there will be a critique is not a good idea (in my opinion).
        Let me put this differently:
        As a cub reporter I was trained to write about news and to be totally objective about what I wrote. As a court reporter I was trained on the job and taught – on the job – but I would never comment on the law. As an aside the Oscar Pistorius trial in South Africa (where I live) seems to have made a lot of so-called reporters experts in the law! I don’t believe that is a good thing at all. In addition, I have done a lot of medical and health-related reporting in my time, but I have never ever tried to critique anything, because I don’t believe I am qualified to do so. Now I have the courage to comment, but wherever I can I will find someone to give an opposite opinion if it is required.
        I have a Bachelor of Social Science degree, but I don’t believe this gives me any special rights in terms of reporting.
        BUT as a writer who is not employed in main-stream media, I now find myself in a position where I can add to my own good, honest, old-school reporting approach by pulling in info from people who know the truth on issues like ME/CFS.
        And lastly, I should probably add that for many years I wrote press releases for commercial clients and had most of them used verbatim – with the byline of people working on various newspapers and magazines. As long as the press release was well written, it was used. My clients were happy.
        … which is why I understand why even the so-called leading newspapers will pretty well take a press release from the likes of The Lancet Psychiatry – do a spin on it and voila. You need to see it coming – understand how it works and then try to work around it. Easy to say but not that easy to do. But nevertheless worth putting a few heads around some possibilities perhaps?
        At the end of the day I don’t believe a good journalist will deliberately deliver either inaccurate or biased articles. If they do they should be fired!

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      2. Utting Wolff Post author

        Penny, it’s not about being ‘on our side’, it’s about upholding a modicum of decency. If a journalist wishes to base his or her career on regurgitating what is churned out by news agencies that would theoretically be fine by me. However, the free press has press laws and professional standards for a reason in Western societies, namely to critically examine societal phenomena and expression in order to uphold and further democratic processes. If journalists, or their employers I should add, no longer see it as their first and foremost task to apply their critical thinking they are taught at university (where I have taught and examined dozens of journalism students) then they lend themselves as mouthpieces to people with vested interests. Objective reporting is not about verbatim repeating what a news agency provides you with; it is about critically examining sources and quickly being capable of grasping the context in which a particular story presents itself. To be oblivious of all context is not objective reporting, quite the opposite is the case.

        De-contextualisation leads to lopsided articles the likes of which we see time and again to the detriment of people in all areas of society. I do not think, as I have already mentioned, that being on someone’s side is the point of good journalism. The point is, old-fashioned and laughable as it may sound, to extract the truth, layer by layer. All else is advertising or informing. While I write this, the memory of one of the best seminars I attended was about the difference between information and knowledge (a lot of junior journalists were present, too). To me, a good journalist is someone who has a passion for knowledge and knowledge is something quite different from information. Lastly, there are journalists such as David Tuller and Llewellyn King. They have written extensively about ME and its politics. Have you heard of them?

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      3. pennyswift

        Yes of course … but they are not the norm – and there are still others of the same calibre who are active in other fields. But I was trying to explain the norm; if you have taught journos you should understand. Sadly a growing number of newspapers don’t care because profits are down and they aren’t going to be around for very much longer. Good journalism is being threatened big time. In SA the very best journos are being fired left right and centre because they extract the truth – and that doesn’t suit some people/organisations+++.
        And in this forum I simply stated “I am on your side” because in another forum a year ago I was attacked in a way I will never forget for simply reporting on something that had been published by a US government body. I was accused of promoting anti ME/CFS propaganda. I have huge standards for my own reporting … Frankly a “modicum of decency” is not enough.
        Critical thinking is one thing; rational nonjudgmental reporting is another.
        Objective reporting to one person may seem irrational to another. True story.

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      4. Utting Wolff Post author

        First of all, I am very sorry to hear you were subjected to hostile reactions in a forum. That must have been very unpleasant.

        A modicum of decency is nowhere near enough, I couldn’t agree more. I was referring to the recent media onslaught that lacked all decency. We are in agreement about what is going on in the world of journalism. No good at all. As far as objective reporting is concerned I don’t think it matters if a climate change denier doesn’t believe in the scientific evidence. Climate change is still a fact and journalists shouldn’t be concerned with the ‘upset’ they might cause to people who are scientifically illiterate. The same goes for ME and all else where the scientific evidence is overwhelming.

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  7. Graham McPhee

    Well said! Here’s a very short video emphasising just how little has been spent by official bodies in supporting biomedical studies. No wonder we don’t have anything!

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