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CFS etc over on Bad Science

Discussion in 'Action Alerts and Advocacy' started by Angela Kennedy, Apr 23, 2010.

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  1. natsci

    natsci Guest

    Hi, I also hang around on Bad Science (with the same username as here) and just wanted to clarify this point.

    Jonas' comment has not been deleted, however, it has been taken completely out of context. You can find the quote and context here.
    His original comment to the Bad Science forums has also not been edited/removed and can be found here.

    Also, with regards to this quote:

    what exactly here is defamatory?
  2. Knackered

    Knackered Guest

    Why are you people coming from bad science to post on this forum?
  3. Angela Kennedy

    Angela Kennedy *****

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    Ok, Natsci, you sort of answered your own question here with your wiki-thing.

    By the way, am I right you are NOT a CFS sufferer or advocate? In which case the question needs to be asked - why are you here, now?

    I must tell you in advance, and any other 'Bad Science' forumites who think they can come over here for bloodsport, that I will NOT tolerate gratituous posting of cats here to derail an argument. You people have ruined my enjoyment of cats and for that I will never forgive you.
  4. natsci

    natsci Guest

    I guess I wanted to see things from the other side. Once I'd read this thread I thought it would be irresponsible of me not to correct those points.
    Since you would be welcome on Bad Science, if you were willing to read the thread before posting, and when stating 'fact' supplying evidence (generally in the form of published peer-reviewed papers from a reputable journal - as of the type found on search engines like PubMed), I hope you will extend the same courtesy to me here.

    Edited to add: And, whilst I understand the principle of defamation, why is that statement defamatory? Defamation is ''expressly stated or implied to be factual'', none of that quote is.
  5. Angela Kennedy

    Angela Kennedy *****

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    Except you haven't corrected anything - just attempted to argue your opinion. It's not the same thing- sorry to correct you and all that.

    So, how about you don't 'go native'?
  6. natsci

    natsci Guest

    Actually, if you read my post, you'll see I corrected someone's mistaken opinion that Jonas' post had been removed from Bad Science. It has not.
  7. Esther12

    Esther12 Senior Member

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    Either:

    1: A genuine interest in CFS

    2: They've realised a lot of people seriously ill with CFS struggle to deal with the uncertainty that surrounds the condition, so think it will be ammusing to kick them arround for a bit.

    3: Really 2, but they'll tell themselves it's 1.

    Some of the claims made by people here deserve a bit of a kicking, but I think that having to deal with someone who has no understanding or experience of the condition is unlikely to go well. Maybe it will be useful though. I'm kind of curious how it will go, in a morbid sort of way.

    re: Eon Procter - unless there's evidence I'm not aware of, isn't it a bit shitty to presume he was being abused by his parents?
  8. Knackered

    Knackered Guest

    MJ's here to "engage", he thinks our illness is psychological and he needs a shave.

    What we're about?
    Would you go to a forum with people who were HIV+ to find out "what they're about?"

    XMRV hasn't been proven yet but I'm pretty sure it will be, this year.
  9. natsci

    natsci Guest

  10. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Could we have Ean's name spelled correctly, please? It's "Ean" not "Eon" as has been misstated on Bad Science.
  11. natsci

    natsci Guest

    Actually, I think you'll find we get it right on Bad Science...
  12. Robin

    Robin Guest

    Thank, Knackered. I thought he was genuinely curious! I feel kind of bad about taking him at his word.

    Everytime I read a little write up about how easy it is to treat ME/CFS I feel really wistful, I wish so badly that stuff actually worked.

    I read some more of his posts and Bad Science, especially the ones regarding Ean Proctor. I don't know what really happened with Ean. MJ rejects Ean's own words in favor of an article citing a medical investigation in a "peer reviewed" paper. It's here if anyone wants to read it.

    Allegations against the Proctors were that they providing inadequate care for their child. Apparently the basis was that he lost weight and was sick. Again, I don't know what happened but I know from my own experience that appetite loss and weight loss are symptoms, I lost 8 pounds in two weeks last summer. It's very conceivable that the evidence of "abuse" were just symptoms of illness. Severe cases aren't as common as mild ones and it's possible that the medical staff weren't familiar with how badly the illness can affect the body. The Proctors were seeking medical care and trying to help their child. If they were abusing him, wouldn't they want to hide it?

    There are disparate accounts of the swimming pool incident, the feeding, the amusement park ride, between what Ean says what is in the report. MJ gives weight to the report, over Eans' account:

    I don't think we have this report online, do we? Just the synopsis?

    But, it's not inconceivable that the accounts in the report aren't entirely honest. Here's an example of a physician being told to lie about a wrongful death in litigation proceedings; here's an example of police blatantly lying about the existence of evidence. (There's a lot more of these but I think two makes my point.)

    It's not implausible or impossible that Ean's account is the truth.
  13. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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  14. natsci

    natsci Guest

  15. Angela Kennedy

    Angela Kennedy *****

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    Ok - we could go on like this all day.

    Natsci - I realise you did correct ONE THING - the issues about where Jonas's post went. Thank you and I'm very sorry. But in my defence you did use the word 'point' in the plural, hence it was easy for me to assume you meant all your opinions you thought were 'corrections'. Now don't take that to mean you're right on everything, now!

    Your use of Richmond's account carries little water because over here we are aware hers may be a biased account, mainly because of what she writes about ME patients has been consistently prejudicial - whoever published it.

    But I should warn you - those of us here - sufferers, carers, cannot engage with the level of anal obsession and trump playing witnessed on the Bad Science forum, nor are we impressed with it. Many of us have been engaged with critical analysis of the 'bad science' of psychogenic explanations for somatic (bodily) illnesses for some years now. I personally hoped BS forumites might have employed some critically analytical thinking to THAT issue, rather than bait sufferers and the community at large as in this latest debacle. But it wasn't to be.

    But that level of inconsistency has rather blotted the copybook of all those claiming rational, 'scientific' scepticism over on BS, including any coming over here to point at the natives. Many of them are mired in the 'woo' of psychogenic explanations - which is frankly quite traumatic to witness!

    But anyway, over here - people are not condemned for slight mistakes in linguistic understanding. One doesn't win the point by getting formatting or spelling correct. Pictures of cute animals are not used to derail an argument - but just for nice, pleasant reasons!

    You have been warned!
  16. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    You're welcome. I meant to add, Maarten, that former NHS GP, "Dr Crippen", who published under the cloak of anonymity, has taken down his blog, but his Guardian opinion pieces remain online, here:

    http://www.guardian.co.uk/society/series/dr-crippen

    "Dr Crippen" was fond of phrases like "ME loonies" and used to call those who corrected his errors and misconceptions "anal pedants". Oh, how we miss him.
  17. Angela Kennedy

    Angela Kennedy *****

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    Thanks for all this Robin.

    No - of course not!
  18. Robin

    Robin Guest

    My post was not a knock against Ean, it was to show that MJ's case against him (rather, his parents) is not ironclad.

    I loved that you called the pscyhogenic stuff woo-ish! It sure is. CBT's benefit is clinically insignificant and not far from placebo numbers:

    http://www2.cochrane.org/reviews/en/ab001027.html

    I didn't read the actual studies but they're probably done using Oxford criteria? Yikes, CBT doesn't work for anything.
  19. I started this thread on Badscience because on the main thread about the Sarah Myhill GMC complaint new members were derailing the thread and making it unwieldy by posting on unrelated or distantly related subjects rather than starting new threads as tends to be the norm. Wessely had been brought up several times which is why he is one of the new threads I started.

    If you like I can start up a new thread on the psychiatric paradigm (presumably you mean the paradigm in general rather than with regards to ME/CFS). Or you can start up one yourself if you wish.

    All the best

    MIKE
  20. Koan

    Koan Be the change.

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    I agree with your astute assessment of the probable motives.

    I would also like to say: beware your heart's desire...

    peace out,
    k
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