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ME: bitterest row yet in a long saga

Discussion in 'General ME/CFS News' started by Omar88, Nov 25, 2012.

  1. Sasha

    Sasha Fine, thank you

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    I haven't been following this thread and just caught this last one of yours, Firestormm.

    If anybody objects to the language being used in a post, please report it, by clicking on the word 'Report' just to the right of the poster's name and date at the bottom left of their post (find 'like' or 'reply' and slide left - you'll find it).

    And please don't use bad language on the forums - it gives our volunteer moderators, who are sick like we are, a job to do and makes the forum not feel like a safe place for others. Moderators aren't trawling threads looking for problems - they rely on us to report them when they see them.

    If you're reading this and wish you hadn't said something quite so strongly in one of your posts, you can edit that post.
    Jarod likes this.
  2. Firestormm

    Firestormm Senior Member

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    We were talking about a thread on Bad Science Sasha - don't panic :)
  3. Sasha

    Sasha Fine, thank you

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    OK - moral crisis over! ;)
    Firestormm likes this.
  4. Adamskitutu

    Adamskitutu *****

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    But we are talking about the wish to do violence against a woman here Firestormm, being treated as a fair comment.

    Are you not shocked at that? Especially when we consider how ME sufferers are being accused of intimidation and threats etc.
    Jarod likes this.
  5. Firestormm

    Firestormm Senior Member

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    Adam. Yes. If this were spoken or sent via email or letter to Lady Mar then certainly I would. I don't generally relate to profanities. I know what you are getting at - at least I suspect I do - but I am not willing to bite or condemn a whole forum for tolerating the language (or intent that you imply and I do not see). Do you suggest forwarding to Lady Mar? You know there is the threat of legislation and the like for all this internet shenanigan's and plenty has been levelled at a variety of people. There are I believe members there with our diagnosis but I am not familiar with their rules... and you need to be at least aware of the context. No I don't condone it.
  6. Adamskitutu

    Adamskitutu *****

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    I am pretty sickened at the casual misogyny accompanied by the wish to do violence first and foremost. I would hope everyone would be.
  7. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    I've been off here for a few weeks and just spotted this thread, i tried to click on the 'independant' link but its not working, a 503 error. Has it been removed?
  8. Jarod

    Jarod Senior Member

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    It's a little slow, but worked for me. Sometimes searching for the article title in google will find the article somehwere else.

    Title:
    "ME: bitterest row yet in a long saga"

    Edit tried again and it is behind a paywall.
  9. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I don't think gender should be an issue, but even in the context of 'dark humour' (?) the object person being septugenarian with a publicly acknowledged history of serious health impairment makes the comment of dubious merit to say the least. And of course in the specific context, a charge of hypocrisy is pretty hard to defend.

    Nevertheless it's an aposite warning of how things can look from the outside of a forum or interest group and how offence can be taken far beyond a group's expected audience. The 'well it's what others do' defence doesn't work if you are trying to persuade other people that you are actually reasonable and do in fact have a valid case to make, despite having written abusively or threateningly.

    IVI
  10. Adamskitutu

    Adamskitutu *****

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    But gender IS an issue here. I'm trying imagine this guy saying that about two men, and I suspect it would not happen. It takes place in a context of desired violence against women. This is not usually acceptable in reasonable discourse because it is sexist and misogynist. It is advocating violence against two women for daring to speak, and we don't have to be women to understand this either.
    Valentijn and Shell like this.
  11. Esther12

    Esther12 Senior Member

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    I just want to be clear that I wasn't saying: 'Look at the terrible people on Bad Science posting about how an elderly women deserves to be beaten until their hands are bruised, we cannot possibly take anything they say seriously', I was just pointing out that they seem appalled by 'harassment' from CFS patients which is less extreme that they which they themselves engage in.

    Personally, I expect quite a lot of extreme content on the internet, and don't particularly care about it either way. I'm more interested in trying to find good arguments than unreasonable ones, and if there'd been any serious defence of, for example, the way in which results from PACE were spun I'd have been interested to read it. However, if people are going to claim that 'harassment' includes saying that the PACE researchers lied about their results, or whatever Mar said about Wessely, then it should probably also include someone saying: "I think that the countess of Mar, like volcano, needs a really good slapping. Hard enough to bruise your hand. I'd volunteer."

    This widening of what is viewed as "harrasment" for CFS patients does trouble me, particularly when it's taken to include Freedom of Information requests (I'll whack in another link to this thread about an FOI for PACE recovery data: http://forums.phoenixrising.me/inde...d-releasing-data-on-recovery-from-pace.20243/). A number of important and influential CFS researchers have been spinning results to make false claims about the efficacy of treatments, and patients are right to be angry about that. There does seem to be a trend towards trying to present all of that anger as being a result of cartesian dualism, or a fear of the stigma of mental health, not believing psychiatric illnesses can be 'real', and so on.... this is such bullshit. It's particularly ridiculous to me coming from Bad Science at a time when Goldacre has a book out about how data from trial is manipulated and the importance of researchers releasing data, and how deviations from protocol can lead to misleading claims. Given the nature and tone of the forum there, I do think that it's fair to hold them to higher standards for looking at and understanding the evidence than those of random people who just happen to fall ill, and yet the discussions around CFS there don't seem to dig seriously in to the details or evidence about why so many patients are upset and angry, reducing it all to foolish dualism instead.

    PS: Just to be clear, @ IVI not slagging off your posts which were there, or anyone elses. It is mainly the way that patient concerns are dismissed as being stigmatising mental health that really pisses me off. Especially as I didn't see anyone there saying 'But I don't think mental health problems are 'real' ' or anything remotely similar. Constructing straw-arguments like that is like the worst of CFS 'advocacy', but being presented as a sophisticated and reasonable response.

    This is pretty much exactly the thing that I find most irritating right now, so perhaps I'm responding too forcefully... but fucking hell!
  12. DaiWelsh

    DaiWelsh

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    I agree, it seems especially ironic given that SW himself did a study that claimed to find no elevated hostility to Psych among CFS patients (I make no claims to have checked the validity of the study):

    Warning and apology: links to SW website, do not follow if you prefer, if you do replace hxxp with http

    hxxp://simonwessely.com/Downloads/Publications/CFS/107.pdf
  13. Enid

    Enid Senior Member

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    It is and was bitter here in the UK very simply because SW and psychiatry stepped into a void of biomedical research and understanding at that time. Now he et al are dead ducks.
  14. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Sometimes a 'dumb statement' is just the result of someone saying something dumb. - but to be clear I'm not defending anyone.

    The BS forum is what is, there is a fair number of posters who present themselves as female (who knows what gender anyone is on the Internet) and I personally wouldn't characterise that forum as either notably misogynistic or misandronistic. I'm afraid the poster (who may or may not be female) who was included in the 'slap' comment is experienced by many other posters (me included) as a complete bloody pain and having them associated with M.E/CFS in relation to the annoyance they cause on the BS forum does not in anyway further discussion of M.E/CFS in a productive way. A surprising number of people with M.E/CFS do post on BS and for the most part the illness is discussed in entirely appropriate terms; though of course opprobrium is heaped in spades on any quackery or assumed quackery that might be associated with M.E/CFS - that is after all what BS is all about.

    IVI
    barbc56 and Firestormm like this.
  15. Holmsey

    Holmsey Senior Member

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    Here we go again, another exchange upon which we will no doubt just have to agree to disagree.

    You may choose not to recognise it, and that is your right, but IMO, in Government, in the Health service industry and in the press, we, the posters on sites such as PR, are regarded as delusional, angry and vindictive. Take a look at what's said here about how the NHS really views us, take a look at what the MRC says to the C of M regarding her parliamentary questions surrounding the results of PACE, then go take a look at the thread which followed Max Pembertons last article attacking us, read the posts on that, not from the ME/CFS community but from Joe Public, then come back and tell me I'm the one who's miss reading the situation.
    Unless of course you want to argue about whether or not Government, the NHS and the Media are where it really matters.
  16. Enid

    Enid Senior Member

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    What is a strange person IVI is - argueing still in the light of medical findings - what, maybe we hate psychiatry , got fears of mental illness, full of suggestions about how to set us all straight. NO you have missed the point - not in this field of medicine.

    You may be Oxford - 4 Docs (specialists - Neurology, Radiology, Paediatrics) in my family who know better and can grasp (like understand) the current research and patholgies involved.What a waste of time anything else is.
  17. Adamskitutu

    Adamskitutu *****

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    Whether other members on that forum do not like that self-identified female poster is not an excuse for that use of a 'violence' wish against her or Mar. It is both hypocritical and misogynist. The frequent use of the C-word against that poster is not woman friendly either.

    I don't share your approval of the Bad Science website I'm afraid and would disagree with your assessment of it.
    Valentijn likes this.
  18. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I agree entirely, although I'm probably more inclined to be forgiving of the failing. In my view it is largely about perspective and I'd say BS's audience consists of committed research professionals who share a perception (whether accurate or not) of a general oppression against scientific thought (from religious, commercial sources etc) as well as direct threats to their own professions (funding cuts etc). In that context 'ill informed' patients/consumers/end users who display less than full appreciation of the sientific process, may not be considered as worthy sources of explication.

    Thanks - though no danger of any offence being taken, at least not by me. Re: the "stigmatising of mental illheath", there are posters on BS who do write from a mental health perspective, both patients and at least one health care professional, and certainly one of the former has strongly argued that the M.E/CFS perspective is actively denigrating of mental illness. This is interesting because it does provide a context for patient v patient dispute not merely patient v professional. For what it's worth I think the particular individual's arguments are flawed but that's not the key issue as far as I'm concerned - the more challenging issue is how M.E/CFS patients and Psychiatric patients might find common ground given that there is diversity of view. We can blame the professionals for raising harmful memes about how M.E/CFS patients view psychiatric ilness, but in the end if the area of dispute is to be negated it'll be down to patients from across the illness divide to resolve the problem. In the UK this has practical implications because in the new service commissioning arrangementsin England M.E/CFS and psychiatric patients may increasingly need to co-operate in terms of influencing service delivery. It's worth noting that one of the longest established and most effective patient advocacy organisations in the UK is MIND

    IVI
  19. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I hate the use of any reference to male or female generative organs as a negative connotation - but it's Teh Internets, I'm just an old codger and the future is youthful - and apparently very, very rude.

    IVI
  20. Adamskitutu

    Adamskitutu *****

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    But do you not accept that the use of that word against women is seen as particularly offensive? Can you point to a generally equal use of terms for male genitalia on that thread against either women or men there? How many times has that woman been called a C word, compared to other men on there being called terms for male genitalia? It looks to be a massive difference. I haven't seen one man called a term for male genitalia, on the whole forum.

    I also think they are baiting that female poster - even though she has constantly tried to ingratiate herself with them. Now the fact they don't like her and bait her is one thing. The expression of wish to do violence against two women coupled with the constant use of the C-word against one of them for debating stuff is pretty damn nasty. In the circles I move in - neither are excusable. Maybe that makes me a new age hippy or something.
    Wildcat and Valentijn like this.

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