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Front Page BBC article about CFS?? (ME)

Discussion in 'General ME/CFS News' started by LaurieM, Sep 23, 2011.

  1. LaurieM

    LaurieM

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    The BBC is carrying an article about ME on the front page of it's news website today (24th Sept).

    Chronic Fatigue Syndrome: 'Surrounded by uncertainty'
    http://www.bbc.co.uk/news/health-14883651

    A lot of the usual British perspective, with no mention at all of the research that's been going on around the world, and still bleeting on about the PACE trial :Retro mad:
     
  2. Valentijn

    Valentijn WE ARE KINA

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    I dunno, looks pretty balanced to me, compared to the crap that's been coming out recently. There's no actual investigation or verification of the information, but at least it's coming from a variety of sources.
     
  3. Bob

    Bob

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    Yes, it's far more balanced than I expected it to be.

    Too many questions asked to psychiatrists, and misinformation given about the PACE Trial, as usual.

    But overall, I think it's not offensive, which is unusual for the BBC these days!
     
  4. Battery Muncher

    Battery Muncher Senior Member

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    I thought it was quite good, to be honest. Especially when you compare it to other UK articles on this illness. It's quite balanced, and makes it clear that ME/CFS should be taken seriously.

    There are a lot of references to important sounding figures e.g. Professor Michael Sharpe at Oxford, and Prof Sir Liam Donaldson. These people aren't necessarily at the 'cutting-edge' of ME research (with all due respect to their achievements), but they sound important making it more convincing for the average reader with no knowledge of ME. More importantly, they come across as being quite sympathetic to our cause.

    However, there are a few questionable parts. The end was a bit poor - I question whether these children who recovered actually had ME/CFS in the first place. The difficulty of diagnosis in these cases should have been emphasised more. As it is, there is a kind of implicit assumption that GET will work in the right circumstances. Differing opinions on the PACE Trial are mentioned, but it's kind of clear where the writer's beliefs lie. I wish they would dig deeper to find the reams of criticism that have been written on the trial, but I suppose that won't happen for a while.

    Finally, as mentioned above, it's a little disappointing that more recent research has not been mentioned. I'm thinking of the International Consensus Criteria (ICC) here.

    Overall, however, the article is of good quality. As far as media coverage goes, it's pretty good. Plus, it keeps us in the public eye. Perhaps this will get the ICC more notice when it is released. So I would look at it in a positive light.
     
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  5. Enid

    Enid Senior Member

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    Really the best advice one could give to the BBC (or any other) is to attend the Ottowa Conference and learn about the real thing or forever stay as ignorant as most in the UK (including those Psyche Profs)
     
  6. anniekim

    anniekim Senior Member

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    Like some others have said, I actually found this article more balanced than I expected. Yes, the dreaded pace study was mentioned and quotes from psychiatrists such as prof sharpe but I was pleased to see the journalist shared that patient groups think the results have been exaggerated and quote dr shepherd on his concerns that treatments such as GET are too simplistic. I've seen a lot worse articles from the British press
     
  7. currer

    currer Senior Member

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    Im surprised to see that there is such an acceptance of this article here.

    I thought it was dreadful.

    Havent we all had enough of this old tosh? I have been ill too long to have any tolerance left for this stuff.
     
    Bob likes this.
  8. Esther12

    Esther12

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    My standards are so low after their 'crazy militant patients who hate psychiatry' campaign, that anything half-way respectable is great. The BBC has a general tendency to deference to authority, and it seems at its worse with it's CFS reporting.
     
    Last edited: Mar 24, 2014
    Bob likes this.
  9. currer

    currer Senior Member

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    Yes for this type of article to seem acceptable we firstly need lowered self - esteem.

    But is this good or desirable for us?
     
  10. Bob

    Bob

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    Yes, I'm afraid that I'm having the same experience as Esther here... I'm afraid that they've successfully worn me down with the barrage of attacks on our community, so that I was pleasantly surprised to see an article with a little truth in it!

    But I don't think it's a self esteem issue... It's just to do with expectations.

    But on the subject of self-esteem, maybe we need to find some way of reinforcing and bolstering each other's self esteem on the forums, to counter the effects of long term illness, and these attacks on our community.
     
  11. Wonko

    Wonko Senior Member

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    The other side.
    It is amazing to see people debating whether horse or bull excrement leaves a better taste in the mouth, with few considering whether we should be force fed either.

    Or possibly it's just me....
     
  12. Yungas

    Yungas

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    I found this bit interesting:

    "Dr Ester Crawley, who specialises in children with the illness, said: "The prognosis for adults is poor, but for children it is really good, up to 94% get better."

    She said the reason for this was unclear, but theories included "neuronal plasticity" - as children's brains are not fully developed, they can heal better - and "the adult lifestyle being predicated against recovery"."
     
  13. Yungas

    Yungas

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    Can you be more specific what were the shittiest bits ? lol
     
  14. Bob

    Bob

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    Wonko, no it's not just you.

    But I think you have slightly misinterpreted the discussion, as I think many of us are aware of the issues.

    In relative terms of what we expect from the media these days, then this article does stand out as pretty balanced.

    I've just re-read it, and it does have some good stuff in it, along with some bad stuff.

    And, actually, some of the good stuff is pretty helpful and accurate.

    As for the bad stuff, I think it's relatively mild, and it includes some balanced counter-points. I've seen far far worse recently.

    Whether we should be force fed this sort of stuff, please be reassured that I don't take it sitting down. *

    I have a formal complaint working its way through the BBC right now, regarding the Wessely interview.



    * Correction: That is slightly misleading as I'm usually sitting down, especially when making formal complaints!
     
  15. currer

    currer Senior Member

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    .

    But on the subject of self-esteem, maybe we need to find some way of reinforcing and bolstering each other's self esteem
    on the forums, to counter the effects of long term illness, and these attacks on our community.[/QUOTE]

    OK, Ill start with you, Bob.

    I would like to declare that Bob is a vey nice chap, who posts thoughtful, well considered and balanced statements and is a credit to our online community!

    THERE!
     
  16. Angela Kennedy

    Angela Kennedy

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    It's a curate's egg - good in parts, meaning the egg is actually bad and unsuitable for eating.

    I know curate egg analogy doesn't always apply. On this occasion it does though.

    Yes the BBC are the subject of various complaints at the moment (including from me). They may be utilising a tiny amount of 'not so bad' narrative in the circumstances. We need, as a community, not to be grateful for tiny concessions that allow the predominantly harmful message to stay unchallenged, which has happened here.

    We need always to be critically analytical, and be aware of our own tendencies to be inappropriately pathetically grateful (I have that tendency as much as anyone), which adversely affects rational evaluation.
     
  17. Bob

    Bob

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    People are making good enough points in this thread, but I am finding the tone of some posts a bit patronising.
    Although, I know that wasn't anyone's intention.
    I mean, people like Esther and myself, are experienced enough in the field of ME to be able to spot the mistakes and shortcomings of the article.

    We can't all possibly challenge, or do an online analyse, for every single article that we read.
    So we were expressing our overall impressions of the article, in a relative sense, without doing a heavy duty analysis.

    Like I said, it is a relatively good article, and I personally can't be angry everytime I see or read something that's not totally accurate.
    It would be exhausting.

    So for me, it's a relief to see something that is a step in the right direction.
    Actually, I do feel a sense of relief when I see things improving as it makes me think that the work that we all do is paying off.
    That doesn't mean that I am not aware of the article's shortcomings, and it doesn't mean that I've switched off my critical faculties.
    It just means that I'm saving my energy for other stuff that is in greater need of challenging.

    But sometimes I think it's nice to take a step backwards from it all, and think, well yes, we are making a difference, and things have been changing over time.
    I know that this change can never be quick enough for some people, and I fully understand that. But every small change that we make, helps people in the future, even if it doesn't return our own lives quickly.

    For me personally, I have to be grateful for small things sometimes, and when I see that progress is being made, even if it's only incremental progress, it helps me personally if I register it, and to appreciate it.

    But that doesn't mean I am in anyway grateful to the BBC. I'm not - they've been dreadful.
    But I am extremelly grateful to, and proud of, everyone in our community, and everything that everyone does, including everyone who has posted in this thread.
    In the mean time, I continue to analyse, and criticise, and to do my small bit in trying to make a difference.

    I'm just saying, because it can be tiring to be constantly criticised on the forum sometimes.
    And I don't think that we all do enough to say to each other that we are grateful to each other.

    Sometimes some of us fall out over details that we disagree strongly about.
    But that is a shame, because we all want the same thing, and sometimes I think we forget to support each other.

    I'm not aiming this at anyone... These are just general comments, that apply equally to myself... I'm making criticisms in this post, just as I'm complaining about other people's criticisms.

    So anyway, thank you to everyone on this forum, for everything that you do, and for your strength and courage.

    Maybe we should start a general appreciation, and gratitude thread.
     
  18. Bob

    Bob

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    *blushes*

    Thank you currer. :hug:

    As you know, I massively value you and all your contributions!


    I also value Angela, and appreciate everything she does, even though we fell out recently, unfortunately. But I've put all that behind me now, so I hope Angela and myself can continue to be friendly colleagues.
     
  19. Wonko

    Wonko Senior Member

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    The other side.
    I'm sorry if anyone feels I was critising them, that wasnt my intention and in fact it never enetered my head that anyone would think that.

    I was simply stating my surprise that some people viewed the article as good news, thats all.
     
  20. Bob

    Bob

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    Actually, I think I maybe feeling a bit depressed this weekend because of the XMRV developments.
    So I apologise if I'm coming across as a bit sensitive, moody or confrontational.
    Might be a good idea if I stay off the forums for a few days.
     

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