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Why few dare tackle the psychology of ME

Discussion in 'General ME/CFS News' started by Firestormm, Sep 24, 2012.

  1. Nielk

    Nielk

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    This part in his argument is is so pathetic. I know someone who is totally paralyzed from ALS. He has been on a respirator for the past 17 years. He is home and is completely disabled. He only has control of his eyes. They got him a specialized computer that can be controlled with eye movements. With it, he has been able to write a book that has been published and he is very active on line. This is his only way of communicating and. He has been quoted as saying that these 17 years (because at the hospital there was a question whether to put him on a respirator when he lost the ability to breathe on his own) have been his happiest.

    I guess he would be considered as "too well" to be disabled since he communicates a lot on the internet.
    PhoenixDown, Bob and alex3619 like this.
  2. biophile

    biophile Places I'd rather be.

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    LOL. Indeed they are, despite their reputation for being "militants". :)
  3. biophile

    biophile Places I'd rather be.

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    I enjoyed IVI's detailed comparison of the comment section of online newspapers to "sewerage". Of course, one person's sewerage may be another person's lake water on a hot summer's day, and perhaps there are different grades or flavours of filth. Some people here do not object to rolling around in the lowly comment section of online news articles, while others with the more refined tastes of IVI have no problem rolling around at places such as Wikipedia and Bad Science forums.
  4. biophile

    biophile Places I'd rather be.

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    The portrayal:

    angrymob-extremists.jpg

    The reality:

    bedridden-computer.jpg
    Valentijn, Shell and Enid like this.
  5. barbc56

    barbc56 Senior Member

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    Excuse me for sitting here scratching my head but I have to ask what purpose does your post serve, biophile? Do you feel better after getting that off your chest?

    Why all the put downs if you don't t "tow the line"? I just don't get it.

    Tolerance is a two way street.

    How about a laugh and we all lighten up a bit before we get back to serious business?

  6. MishMash

    MishMash *****

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    This article is a huge boon for ME/CFS. There isn't any such thing as bad publicity. This idiot is opening a public debate that will probably end with a few reputable scientists stepping up for PWCs. It will serve to keep it in the public eye. I remember when the gays first stepped up their increasingly obnoxious war of words against apathy. It worked! Keep twitting !! When nobody talks about you over there is when you should start getting depressed.
    GracieJ, Valentijn, Enid and 2 others like this.
  7. biophile

    biophile Places I'd rather be.

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    Put downs? The comment meant no offense to anyone. IVI seemingly proposed that commenting to news articles, such as the ones in question, was inherently part of the problem for perpetuating the status quo and comparable to rolling around in sewerage. I took no personal offense to that, despite the possible implication that for posting a comment to one of those articles I was part of the problem and took part in rolling in sewerage. I even said I enjoyed the comment!

    Purpose? I merely wanted to point out that the kind of "filth" present in those places which are apparently beneath IVI, happens to be present to some degree at places I have seen IVI frequent before. I do not expect agreement or demonize IVI for having a different response than me, we are all individuals. Interesting however that you raised the issue of "towing the line", which people interpret differently; you thought I was attacking IVI for not towing the line, meanwhile apparently I was not towing the line either for being involved in, supporting, and questioning the criticism of, responses to the ridiculous DT and MB blogs for the negative and largely unsubstantiated portrayals of ME/CFS advocates?

    PS - That YouTube video was a succinct description of social internet!
    Valentijn likes this.
  8. barbc56

    barbc56 Senior Member

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    I can only speak for myself. I have no idea if IVI wil feel offended or not.

    I was confused about why you were posting this.
    Barb C.:>)
  9. alex3619

    alex3619 Senior Member

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    HIV advocacy became vociferous before they got results. We need more not less posters. Some do not do us a service, that I do not dispute, but numbers are a huge part of being effective in advocacy. Its not just about the message. ME, and especially CFS, are not uncommon diagnoses. Yet most people are too sick to engage in advocacy. We need those numbers.

    While I do not support some of the more, (ahem) boistrous posts to inaccurate newspaper articles, I do support the right of people to write them.

    The other thing I question is readership. Physical newspapers have a defined demographic to some extent, but is this true online? People use search engines, so all demographics can be present on a website. So characterizing readership for a website, even a newspaper website, is problematic unless the research has been done. So aiming at a particularly demographic, online, is going to be problematic unless you are on a focussed forum like this one.

    For the most part if someone claims to be well informed about ME or CFS and then writes a misleading article, its not very likely we are going to convince them because they probably already have a defined stance on the topic. Similarly people who read the material for shock value will not be reached. They are not there to learn, their purpose is entertainment. What about the others? The casual reader? The person who finds the article on a search? Other patients and advocates who might learn something? Online is not hardcopy, we are still learning the possibilities.

    What I cannot decide though is if an email campaign against some site more legitimate like the MRC would be spamming, unethical or even immoral, or in what circumstances they would be one or the other. Its a murky area and I have not given it much thought. My stance generally is that posting to such places should be cool and rational, with reference to published peer reviewed science. What do others think? Keep in mind that a vociferous campaign is more about politics than science, and we are too disorganized for anything but sporadic involvement - we are definitely not an organized militant group - I can't even organize breakfast some days, and any militant tendencies I have are pretty well limited to computer games.

    Bye, Alex
    Valentijn and biophile like this.
  10. Firestormm

    Firestormm Senior Member

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    Hmmm... an analogy? :)
    Bob, GracieJ, alex3619 and 1 other person like this.
  11. GracieJ

    GracieJ Senior Member

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    I wonder if he has bothered to ask his colleague the details of his encounters with physicians. That could have been a very interesting topic to write up.

    It seems any writer truly interested in the subject would ask a few more questions... Pemberton and Thompson both got themselves caught in their own trap.

    That raises many more questions about the motivation behind such "reporting," as alluded to in earlier posts.

    I think this has helped the overall ME/CFS picture in the long run without meaning to do so.
    Valentijn, Bob and Enid like this.
  12. alex3619

    alex3619 Senior Member

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    Yes, a good analogy, but some newspaper article writers don't seem to have the sense of a local child. Bye, Alex
    Enid likes this.
  13. Firestormm

    Firestormm Senior Member

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    Or you can see it from the other point of view Alex i.e. 'we' are the children and it's potentially dangerous poking that ant's nest.

    You know we're all talking about perception on this thread. And my concern was that when someone says 'I have been threatened', to then receive repeated comments asking/demanding 'proof' might be perceived as 'protesting too much' especially when those making the announcement are more likely to be taken notice of than any one individual or those attached to this condition.

    I think it is the wrong thing to do. I think it will bite 'us' in the collective arse. I think it already had and because of a minority who will not cease and desist - we all catch fleas. We have a PR problem and this ain't bloody helping.

    You try getting these people to take on board anything of substance and regard the community as worth supporting when this damn anchor is now attached firmly round our necks.

    'You heard of ME?' 'Yeah I think so. Don't they have something to do with Muslim fundamentalists?'

    'Some' of the comments have done very little to discourage folk from seeing beyond that quote. (I also found it interesting that no one appears to have asked who said it or for it to be attached to anyone).

    As has been said previously, we can hardly prevent people acting in the way that they do, but we could have stayed silent or condemned such activities without demanding proof and calling those making the claims 'Liars' which is one perception of said activity.

    Hence, segregating such opinion to the 'militant' view takes it largely out of the equation. Trouble is the more people climb on the bandwagon and demand 'proof' every time they read something they don't like or continue to cause individuals unease to the extent that they report on this activity - or jump all over someone who isn't as informed as they believe themselves to be - the harder it becomes when you are sat in a room trying to further the cause with professionals in charge of the purse-strings, with medical professionals and Members of Parliament etc. or hell even members of your own family.

    And the latest comments (now over 1,000) do not alter my own general opinion of what is on both blogs one iota I am afraid.

    And neither incidentally will I buy that bloody book either - why not say you are the mother of a child with ME? I don't get that latest from Ms. Kennedy. Why say I have a disabled daughter. It might better explain to people why she is all over both blogs and twitter as much (well it wouldn't but still...)
    barbc56 likes this.
  14. Enid

    Enid Senior Member

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    There does seem to be a vicious tendency in the UK press amongst some journalists however prestigious the paper. And in this case (Pemberton) - highly opinionated in a respectable broadsheet should expect "high opinions" in response - he may be looking for informed debate but as we know he is not informed and educating with the real facts about ME just doesn't sink in (though we/many still try).

    @ alex 313.
  15. alex3619

    alex3619 Senior Member

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    I know of a tiny number of cases (two) in which CFS patients have become violent. Thats it. One of those was toward people who had a history of abusing him. The other is vague and may be only rumour.

    If someone is deliberately conflating criticism with harassment or threats, thats political. As a political issue, if this is correct, it needs some kind of response - though that response can indeed be deliberately ignoring it, that decision cannot simply be to avoid being seen in a bad light. We know of two cases involving the PACE trial where harassment was claimed that was not factual - regarding FOI and letters.

    One of the things I am mindful of is a lot of the negative commentary comes from us having not many avenues to say something more productive. I think we need to expand those avenues. I also think bad newspaper articles can be tackled by other, better methods. I am slowly working my way toward discussing such a thing, and hope to get there before New Year at the latest.

    Bye, Alex
  16. Firestormm

    Firestormm Senior Member

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    As I mentioned Enid (morning by the way) I have been a long time reader of the Telegraph and I am afraid it has fallen in my opinion to the 'need' to 'go tabloid' in some respects and having opinion blogs is a clear sign of this. Thompson is meant to be the editor for heaven's sake. Mind you that might you'd think make some folk also think before taking any action.

    n.b. Charles Shepherd:

    I think this is a suggestion that he meets with the health journalists. And people think I always agree with him :)

    Still if it is accepted and proves productive - good luck to him.
  17. Enid

    Enid Senior Member

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    Morning Firestormm - yes I agree it has indeed "fallen" into tabloid ways. One hopes and expects letters to the editor (DT) from our stalwarts here. In a sense the c..p from the media redoubles efforts.
  18. Firestormm

    Firestormm Senior Member

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    "The Daily Fallen" :)
    Enid likes this.
  19. alex3619

    alex3619 Senior Member

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    I think most newspapers are falling into tabloid journalism and churnalistic habits. More to do, with less staff, and lower budgets; standards go out the window when traditional print media is facing extinction.
    Enid likes this.
  20. Enid

    Enid Senior Member

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    Nice Firestormm - I'm old enough to remember the days when aunt wrote to the editor complaining about a rather risque front page article - a reply came back full of apologies and they agreed. They managed in those days to keep a loyal readership. They have currently lost the whole of my extended family by the uninformed (misinforming), inaccuracate, irresponsible sensationalising of the journalists here. With the outright nastiness we think the Editor has lost control.
    Firestormm likes this.

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