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Why is The Guardian's coverage on ME/CFS so poor?

Discussion in 'General Advocacy Discussions' started by Hoopoe, Jul 27, 2019.

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  1. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    They otherwise strike me as a publication that would side with patients and good science. Why not in this case, and is there anything that could be done?
     
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    Science Media Centre
     
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  3. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Why then is the Guardian so susceptible to the blandishments of the SMC, more so than other newspapers? It was my newspaper of choice from university to when I became more informed about the world around ME. It almost felt like belonging to a club. I have friends who will read nothing else. I found jobs and courses through their advertisements. It feels alien now. Why is it so unquestioning?
     
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    Don’t know about all the personalities involved. But SMC come from a group with origins (not currently) in left wing faction, the Guardian is what passes for left leaning in U.K. press. Also left leanings/intellectual side of the Guardian make it supportive of psychology which seems in the case of ME to override its normal support for people who are being oppressed. In this case the Guardian is supporting the system rather than the downtrodden.
     
  5. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    It is bizarre that in a situation where patients are slowly winning against profound injustice, the Guardian is happy to denigrate the very same patients.
     
  6. JemPD

    JemPD Senior Member (Voting Rights)

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    Yeah i feel the same. I'm left without a newspaper now. Not that i'd be well enough to read it anyway but still....
     
  7. rvallee

    rvallee Senior Member (Voting Rights)

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    It's a form of regulatory capture. The abusive promotion of interests and policies not on their own merit but for the mere fact of being in a position to influence public opinion and shut down all dissent and opposition. Essentially: being the referee means they determine what is true.

    Ironically the SMC was supposed to have been created for the exact opposite purpose. Instead it has turned into a powerful propaganda tool.
     
  8. Marco

    Marco Senior Member (Voting Rights)

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    Possibly because all Guardian output begins and ends with 'the narrative'.
     
  9. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Although the Guardian was my paper of choice when I still took a paper, and I probably still read more articles online by the Guardian than other papers, it always seemed to me have had areas where the editors allow bad reporting and even encourage specific prejudices.

    There was a spell when they seemed to be particularly irrational and unfair about Liberal Democrat politicians. Not just disagreeing but almost malicious.

    I don’t know enough to know why they have taken on board the anti ME patient propaganda and become PACE apologists, but assume it relates to personal loyalties and connections with specific PACE apologists and/or the SMC.
     
  10. Marco

    Marco Senior Member (Voting Rights)

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    I was probably a little cryptic in referring in non-specific terms to 'the narrative' in respect to the Graun's reporting of ME/CFS. I suspect it has something to do with SMC/the BPS crowd/the BPS influenced NICE guidelines being accepted as the 'experts' whereas some vocal and newsworthy ME/CFS 'activists' are painted as the 'uneducated' 'populists'
     
    Last edited: Jul 27, 2019
  11. Cheesus

    Cheesus Established Member (Voting Rights)

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    Chiming in to add my voice to the chorus of disappointment. I think Marco is probably right; I think they believe they are taking a pro-science, anti-populist stance, despite the loud racket being made by respectable voices in the scientific community. The only columnist who I have seen write anything in support of us is Francis Ryan. I believe there was also an article a while back that gave an interview to Mady Hornig amongst others. Other than that, the prevailing narrative is "poor psychiatrists standing up to abusive patients".
     
  12. Esther12

    Esther12 Senior Member (Voting Rights)

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    Didn't someone say Ian Sample might have some personal connection to Jo Marchant?

    I get the impression that the Guardian attracts a lot of people who like to imagine they're part of some sophisticated intellectual elite, but want simple narratives can't be bothered to really look into the evidence and. Wessely is great for that crowd. I think of myself as being on the left, and there are some really good writers at the Guardians, but as a publication it's pretty insufferable on a range of topics imo.
     
  13. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    You mean why do they publish articles by the likes of Peter White. I think it's because they think they're giving a 'balanced' view (publishing polar opposite views)

    Not all the articles they publish are negative.
    https://www.theguardian dot com/society/chronic-fatigue-syndrome
     
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  14. Adrian

    Adrian Administrator Staff Member

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    I think in general the Guardian has deteriorated in the last few years - very few articles there these days seem to have any degree of analysis.
     
  15. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Guardian US recently had to publicly chide Guardian UK for publishing a series of transphobic articles that reiterated basically the same arguments used against gay and lesbian rights in the 1980s, and which seemed to align with recent arguments made by the American evangelical right, too.

    I think that as the publication has matured, it's become 'establishment' in its own way. That means it can be quite small-C conservative at times, or at least reactionary, and very curmudgeonly. Part of that is being 'sceptical' but without doing the requisite critical thinking--i.e., just parroting a cynical view without looking at the actual facts.
     
  16. Esther12

    Esther12 Senior Member (Voting Rights)

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    New rubbish article in the Guardian today: https://web.archive.org/web/2019072...-encephalomyelitis-chronic-fatigue-pace-trial

    They did speak to Shepherd who gave them some quotes that they could use to try to justify their spin - difficult to know what he said in context, but imo it's a terrible idea to ever combine criticisms of PACE with discussions about whether CFS should be classed as 'neurological' or 'physical', or anything like that. Especially with a journalist from the Guardian.

    Though they mention Tuller by name a couple of times they don't appear to have contacted him for comment.

    Moderator note: Discussion of this article has been moved to this thread to keep the discussion in one place.
    New poor Guardian article "ME and the perils of internet activism" 28th July 2019
     
    Last edited by a moderator: Jul 28, 2019
  17. richie

    richie Senior Member (Voting Rights)

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    1) Journos do not generally have much science background. They write well and opine profusely. Health articles need more than that, or to be frank about their limitations ('ave a go at this mate. It might do you some good. We found it in Closer magazine, but don't tell).

    2) Left leaning people have attachments to elements of Marx and Rousseau and wish that more of life were amenable to social or economic manipulation. Hard biology can be a stumbling block to this mindset. (Elements of) hard biology may on the other hand be misused by the right, making it a dodgy area for some on the socio-left - especially if they are not schooled/interested in hard science, hence also the need to ask an "expert", who may well in turn err in favour of the journalist's perspective. They want a comfort blanket confirmation of their initial position.

    3) Political people like action and results and in politics power counts so manipulation of facts for results is OK. Many journos are politically minded. BPS wants results regardless of methodology and objectivity. Kindred attitudes.

    4) Psychiatry like politics, will lie for a result:
    "OK, you're suicidal. Well I know you're not (yet) but if I don't appear to accept that you are suicidal now, you might become so soon, so I'll play along as if you are already suicidal, so that you don't presently become so". It's a wise psychiatric attitude but also a political type of "objective over objectivity" type of thought - and thus a familiar and instinctive mindset for many politico-ideological journalists. Why have truth when we can have much needed effect? Psychiatrists, who may well have dealt with suicide cases, will feel that this attitude is ethically OK (it is in restricted circumstances) and politico journalists, unlike some hard science bods, will understand and approve of this approach automatically. Psychiatry and political advocacy are in some ways comfortable bedfellows.

    5)This non objective approach may be fine in some mental health conditions but in ME/MUPS it is misapplied. However, such is the draw of ingrained political patterns of thought and lack of medical interest/knowledge, that many politico journalists jump in approvingly and instinctively with BPS, and very few seem to realise that, applied to ME, such marginalisation of objective fact precludes the other great journalistic value - acquisition of knowledge and presentation of truth.

    The way to the result in politics is often to sit light to the facts, if the facts in their opinion militate against a desired outcome, which is just how BPS for ME is itself supposed to work. In extreme politics if the theory doesn't work, it's the people's fault. Swap "people" for "patient" and you'll get the BPS idea. Sadly in matters ME some mainstream left leaning journos can behave like political extremists - or their useful fools - whilst in not unfamiliar leftist projection/propaganda mode blaming it all on the "fanatics" - us.

    They should all learn from Brecht:

    "We as patients have forfeited the BPS experts's confidence

    And can only win it back

    By redoubled effort. Wouldn't it

    Be simpler in that case if the experts

    Dissolved the patient cohort and

    Elected another?"

    Paraphrased from "The solution" written after 1953 East Berlin rising.
     
    Last edited: Jul 28, 2019
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  18. Wonko

    Wonko Senior Member (Voting Rights)

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    Isn't that what they are constantly trying to do, with the invention of CFS, and then all of the multitude of definitions of it, all of which seem to be focused on 'fatigue' and miss out PEM?

    i.e. they have invented a disease but can't find a patient group it applies to, and even worse we keep trying to claim their disease as our own but with some serious modifications to the criteria.

    It appears, from a certain point of view, as if they went wrong in asserting that CFS was the same thing as ME, by mounting fairly massive media and training initiatives to show that, and then maintain it, fraudulently stealing research funds to try and bolster the lie, by advising government departments, insurance companies and who knows who else, that ME was CFS - for well over 30 years.

    And they are still doing it.

    An easy mistake that anyone could have made, and kept making, despite the official and media oversight that is supposed to prevent this sort of thing, for over 3 decades.

    Yep - the Guardians doing a great job.
     
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  19. richie

    richie Senior Member (Voting Rights)

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    105
    Exactly.
    As to CFS vs ME it all drives me insane because you can be very ill with sth called CFS or sth called ME and a syndrome is just a collection of symptoms and 2 day CPET is useful but what e.g. about stages of recovery etc etc. and what about possible brain inflammation and what about this that and the other ....and the Americans call it CFS/CFids anyway.....

    All I know is that taking one massive group and coming up with CBT/GET showing by the most generous estimates a pretty poor outcome regardless of alleged or actual methodological shortcomings offers a poor hope of recovery and the Guardian should be ashamed of some of its coverage.
     
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  20. Samuel

    Samuel Senior Member (Voting Rights)

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    i am not sure at all, but are we talking about a mainstream newspaper that published the article handed to a reporter by the smc, where perpetrators themselves assembled to craft it, seemingly to stop legitimate requests for data, and also...

    ... in which an advocate none of us (to my knowledge) had ever heard of (and might not exist?) was gratuitously stated to be on a sex offender list? i distinctly remember this but have no link.

    i do not say the following lightly. in a past life i volunteered heavily in the international human rights community and i never use the term lightly. but i suggest reading examples of german propaganda before the part of the holocaust most people think of. you can find a few online in english. i do not mean to be alarmist. i just want you to compare journalistic style.

    put yourself in highly-skeptical mode. try to disprove the idea that the article is similar to that propaganda. even better, hand them to neutral parties (if such exist) along with the article. or hand the article to journalism professors, or historians, or members of the international community who are familiar with such things. ask them to judge in place of yourself. [note: dt has written about the article.]

    ===

    i cannot say, but to me they seem too similar for comfort. of course i do not mean that they portend anything. just that they are uncomfortably similar.

    so i guess i am saying that if the guardian is innocent, and if thy published it, it is disturbing that this was not noticed by them. [and if they did, did they remove the part about sex offenders later?]

    i think it is their responsibility as humans, let alone professioanls, to notice propaganda.

    i don't think noticing something this egregious is taht specialized a skill. @dave30th is it?

    ===

    the world is not politically stable now. scapegoat groups are sometimes sought in such times. the japanese-ancestry american citizens who were sent to internment camps in world war 2 did not have much warning. and that was the place that calls itself the land of the free.

    action t4 was led by highly prominent psychiatrists among others, who were considered above reproach. (1) it was performed clandestinely, (2) it used questionnaires designed to deceive, (3) there was propaganda devaluing the lives of sick and disabled. 200k+ humans were murdered. that iss when teh use of fake showers and zyklon b gas and some of the bureaucratic machinery were invented. this was 2 years before the rest of teh holocaust. it is a paradigmatic example of misopathy.

    again i do not mean to alarm, and i do not see any immediate signs of anythign similar, or internment camps, occurring, but i do not think that it is wise to think "well, it's alarmist and silly to talk about this so let's not do so" in every case when things like that propaganda piece occur. that thinking is partly what allows such events to occur.

    in action t4, the public finally noticed, and finally protested, and the perpetrators backed off. for a while. then continued.

    ===

    having said all that, in the normal course of becoming a movement, we might answer the question about this newspaper by accident.

    interesting facts could surface when making demands,
    contacting prosecutors or attorneys general, getting public,
    and making loose alliances.

    1) foia
    2) whistleblowers
    3) sourcewatch, wikileaks
    4) investigative reporting
    5) testimony, depositions, amicus
    6) investigations by parliaments / grand juries
    7) joining strongholds of perpetrators (dunno legality, and not
    suggesting it, but newspapers have done this to expose fraud)

    i keep thinking of a /far side/ cartoon where an elephant
    using crutches and with a bandaged leg is on the phone. it
    says something like "into a WASTEBASKET?!" maybe it is a
    similarly trivial reason. basically nothing caused mayhem.

    but i think the question you ask applies throughout the
    attack on sick populations now and throughout the long
    history of misopathy. it was not always trivial.

    also it was not always supposedly-invisible signs
    and symptoms.

    ===

    in the game, stratego, you get to find out where the various
    military ranks were. you can infer reasons for actions.

    imo we have many opportunities of many types for turning
    over pieces.

    ===

    tldr: maybe, when we go balls to the wind on activism, we will find out as a side effect.

    ETA: what a prescient thread. that new article smells of smc dark rhetoric.
     
    Last edited: Jul 29, 2019
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