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MEA website poll on press coverage of latest PACE trial analysis

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Nov 2, 2015.

  1. charles shepherd

    charles shepherd Senior Member

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    MEA website poll on press coverage of the latest PACE trial analysis

    We have just opened our November website poll on this subject

    Vote via the home page on the MEA website: http://www.meassociation.org.uk

    Current voting intentions:

    • How do you rate the UK newspaper coverage of the latest PACE trial analysis that was published in Lancet Psychiatry?
      • Excellent (0%, 0 Votes)

      • Good (0%, 0 Votes)

      • Fair (0%, 0 Votes)

      • Mixed – Good and Bad (0%, 0 Votes)

      • Poor (40%, 2 Votes)

      • Dreadful (60%, 3 Votes)

      • No opinion (0%, 0 Votes)


        Total Voters: 5
     
    Snow Leopard, SOC, Debbie23 and 6 others like this.
  2. worldbackwards

    worldbackwards A unique snowflake

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    So, a mix of opinion there then.
     
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  3. charles shepherd

    charles shepherd Senior Member

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    We have quite a few health professionals who make use of our website - so I think there will be some support for the press coverage
     
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  4. snowathlete

    snowathlete

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    wish there was a "diabolical" option.
     
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  5. Gijs

    Gijs Senior Member

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    Dear dr. Shepherd, i read several times that the authors of the Pace trail accuse ME/CFS patiënts from 'abuse and harassment', can you write a letter to these authors and ask them to come with proof for these accusements? How many patiënts were involved? And what did they have said (wrote)?
     
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  6. charles shepherd

    charles shepherd Senior Member

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    I don't think that would be useful or sensible because I have no doubt that a very, very small minority of people who have ME/CFS, or claim that they have ME/CFS, send abusive correspondence to people they do not like or do not agree with.

    On a personal basis, I have had to involve the police on more than one occasion in relation to abusive emails. In one instance, a group of people started embellishing what they were doing with falsified documents. If you check out the BMJ feature that accompanied this story when it first broke there are some examples there.
     
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  7. charles shepherd

    charles shepherd Senior Member

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    Sorry - you will just have to cope with dreadful!
     
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  8. Esther12

    Esther12 Senior Member

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    I think that the example in the BMJ is a little suspect (from @maxwhd on twitter):
    [​IMG]

    Given the vile way that so many of these researchers have behaved it wouldn't surprise me if some people had sent them hate filled correspondence, but a lot of the examples of 'harassment' made publicly do not seem to pan out [stand up to analysis - there are other examples of seeming representations]. It's weird. Maybe they forgot to save their examples of real harassment?
     
    Last edited: Nov 2, 2015
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  9. charles shepherd

    charles shepherd Senior Member

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    Having discussed this issue with several people involved, and seen emails etc that I believe are genuine, I stand by my long standing position that there is a very, very tiny minority of people with ME/CFS, or who claim that they have ME/CFS, that resort to sending abusive or offensive communications (including anonymous phone calls - I am a doc whose number still appears in the telephone directory) to people they dislike or strongly disagree with.

    I condemned this behaviour at the time of the BMJ article and the BBC coverage and will continue to do so because the negative publicity it creates, and continues to create, is used to divert attention form serious and valid disputes with psychiatry over the cause and management of this illness
     
  10. charles shepherd

    charles shepherd Senior Member

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    After only a few hours the tide seems to be turning towards dreadful…


    • How do you rate the UK newspaper coverage of the latest PACE trial analysis that was published in Lancet Psychiatry?
      • Excellent (0%, 0 Votes)

      • Good (0%, 0 Votes)

      • Fair (1%, 1 Votes)

      • Mixed – Good and Bad (5%, 6 Votes)

      • Poor (13%, 17 Votes)

      • Dreadful (81%, 102 Votes)

      • No opinion (0%, 0 Votes)


        Total Voters: 126
     
  11. worldbackwards

    worldbackwards A unique snowflake

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    I see Rod Liddle hasn't been on yet.
     
  12. rosamary

    rosamary Senior Member

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    I will vote 'dreadful' in a bit. But first, I have to agree with Charles when he says:

    ' that there is a very, very tiny minority of people with ME/CFS, or who claim that they have ME/CFS, that resort to sending abusive or offensive communications'

    I have been on the receiving end and know other people who have. It is a very puzzling and disturbing thing.

    However, that is no excuse for 'certain people' to promote bad science as good science.
     
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  13. snowathlete

    snowathlete

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    The vast majority of patients are respectful despite the neglect they've suffered and the negative impact such poor science as PACE has had on their lives. Myself, I have suffered directly because of PACE. It sent me from medium to severe and I have never fully recovered. I am right to feel let down as a result. I have never harassed anyone, or even come close to it. Yet it is the majority of patients like me who are smeared by association when these researchers go and highlight what one or two individuals have said to them in the national press, knowing that many readers will associate these comments about harassment with all patients. I personally feel these are extremely unethical actions.

    That's why I'd have voted Diabolical had the option been present (not that I was really serious about that Charles). Dreadful is perfectly adequate and also covers the other press stories claiming PACE is awesome when the data doesn't support those conclusions at all.
     
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  14. Esther12

    Esther12 Senior Member

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    For my own curiosity, would you be able to let me know what you mean? You could pm if you'd prefer.

    edit: I've actually had a couple of really angry PMs sent to me here. But then I have on non-CFS forums too. I always just thought of that as being what 'people on the internet' do.
     
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  15. worldbackwards

    worldbackwards A unique snowflake

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    I know what you mean and I don't think this is a great deal different from any campaigning situation. There are always a few scumbags who can't control themselves.

    For example, if you look at recent events in politics (the rise of UKIP and the SNP, Jeremy Corbyn's election as Labour leader), they have always been accompanied by a hardcore internet presence of ultras who go round insulting and threatening people (Cybernats and the like).

    I think the reason we get it in the neck in particular is because we're protesting against a diagnosis of mental illness so it plays into the hands of our enemies, as they well know. We are also representing ourselves rather than a wider cause, so we are taken as representatives of the whole. As such, any bad behaviour reflects worse on everyone.
     
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  16. SOC

    SOC

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    I am sorry to hear you have been on the receiving end of offensive or abusive communications. :( There is no good excuse for that kind of behavior.

    I am not surprised however, that a very small number of people diagnosed with ME/CFS, particularly in the UK, have resorted to such appalling tactics. First, because in the UK people with serious primary psychiatric issues are given ME/CFS diagnoses. Second, because they are then publicly abused by the media and the medical profession... just look at this week's collection of insults. Is it surprising that a small portion of these unstable people become unbalanced and verbally abusive? I think not. It's not right, but it's not surprising.

    I'd say all the people who send offensive and abusive communications of that nature are emotionally unstable to some degree. The question is whether they all also have ME. There's really no way to know.

    We all get angry of the kind of abuse, both public and private, ME patients have been subjected to, particularly by the UK medical profession and media. Anyone would. It's not just us. But the VAST majority of ME patients vent to friends and family or come here to PR to vent. An unstable minute fraction, who may or may not have ME, resort to abusive personal communications... just like in any abused minority. I imagine HIV/AIDS-haters got hate mail, too. Russ Limbaugh probably gets hate mail when he abuses some minority or another. It's a sad reality of being a public figure, even in a small way.
     
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  17. SOC

    SOC

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    Exactly. There are hateful people everywhere. Some people love to hate. That's not exclusive to PWME. It's the nature of some people compounded by the anonymity of the internet.
     
  18. Wildcat

    Wildcat

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    I have been on the receiving end of abusive communications from Lightning Process fans, from 'EFT cures ME' fans, from AFME supporters, and from fans of CBT/GET and those who try to maintain the status quo in ME NHS treatment.

    The aggressive and abusive antics of those who fiercely defended the CBT Clinics at APPG meetings was never properly recorded, but swept under the carpet, despite being witnessed by those present, who prefered to turn a blind eye and allow the aggressive intimidation of sick ME patient attendees.

    .
     
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  19. Effi

    Effi Senior Member

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    I think this reflects very poorly on 'our enemies', namely that they jump to the conclusion that because we are fighting a diagnosis of mental illness, we are against people who suffer from mental illness. I think this is their own personal view they are projecting upon us. I personally feel like a mental illness diagnosis many times is a waste basket diagnosis. And we all know how much that doesn't help. What we actually protest against is doctors saying that we have a broken arm, when we actually have a broken leg. They'll examine our arm, take a scan, maybe even put a cast around it, and then be so surprised that we're not getting better, maybe even getting worse. And they will not listen when we tell them over and over again that it is not our arm that is hurting, but our leg.
     
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  20. Snow Leopard

    Snow Leopard Hibernating

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    Where is the "dreadfully poor" option? ;)
     
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