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We'll have all the answers about CFS after EHPS psychology conference in Sept ... or maybe not!

Discussion in 'General ME/CFS News' started by Dolphin, Aug 20, 2015.

  1. Dolphin

    Dolphin Senior Member

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    EHPS = European Health Psychology Society

    @Maxwhd drew my attention to this conference programme with his tweet at: https://twitter.com/maxwhd/status/634509191089102848

    http://www.ehps2015.org/files/EHPS_2015_Programme_31.07.2015.pdf

    Those are the four presentations on CFS
     
    Last edited: Aug 20, 2015
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  2. alex3619

    alex3619 Senior Member

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    I hope they do not confuse association with causation, and psych instrument results with absolute fact. Again. Its probably an unjustified hope.
     
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  3. Dolphin

    Dolphin Senior Member

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    There's a thread discussing Alicia Hughes and some research she has been doing here:
    http://forums.phoenixrising.me/inde...culties-in-chronic-fatigue-syndrome-me.31314/

    Other three names will be familiar to many. Alison Wearden doesn't tend to talk about biological findings so doubt her talk about sleep will be too indepth. Most likely it will be about patients having supposedly poor sleep hygiene and that sort of (patient-blaming) thing.
     
    Last edited: Aug 20, 2015
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  4. JaimeS

    JaimeS Senior Member

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    Lovely.
     
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  5. SilverbladeTE

    SilverbladeTE Senior Member

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    such crap always makes me think of... :p



    either they are:
    a) raving mad
    or
    b) doing it for a lovely con job

    couldn't make this crap up if you tried, lol!
     
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  6. SOC

    SOC

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    :rofl::rofl::rofl:
    :meh: Think so?

    I keep hoping, but I think we all know better than to actually believe such hopes will pan out. Hope springs eternal. Reality hits like a freight train.
     
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  7. JaimeS

    JaimeS Senior Member

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    Several things come to mind:

    a) I know the mistake! Should read "Unhelpful cognitive and behavioural responses are associated with adolescents."
    b) Unhelpful to whom? To the psychotherapist trying to write her paper? My heart bleeds, lady.
    c) Yes, if someone told me I could Stairmaster myself well, you bet your arse I'd have an 'unhelpful behavioural response'. It might involve my middle finger.

    Despite my tongue-in-cheek replies, this one in particular makes me shudder. I taught teens for eight years in public school, and the thought that someone could take one of my kids, as ill as people get with this disease, and tell them that if only they would be more 'flexible' and 'cooperative' and listen to their elders they'd recover... their logic and self-confidence is not always well-developed enough to stand up to that sort of thing, especially if they are being pushed by an authority figure. The whole thing makes me want to scream.

    They should be ashamed of themselves.

    -J
     
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  8. JaimeS

    JaimeS Senior Member

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    I want a full-text later so I can mock it line-by-line.
     
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  9. SOC

    SOC

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    :rofl::rofl::rofl:
    :thumbsup:

    They certainly should be ashamed of themselves! I tutor a couple of teenaged boys with severe ME. The LAST thing they want is to be cooped up at home, mostly in bed, feeling like death, disconnected from their age mates, their games, their sports, and their futures. To suggest that these boys are bringing this misery upon themselves through their thought processes is beyond ignorant. It is ugly and cruel.

    If these psychologists had the slightest clue what they were talking about they would be ashamed of themselves... that or they would have to be psychopaths with no empathy or basic human decency. That they are members of a profession that is supposed to understand people, and care about their emotional well-being is disgusting. It's like putting gun-waving gang members in charge of the daycare center.

    It makes me SOOOO angry that these evil people are focusing their ugly energy on kids who don't have the maturity or life experience (or health, or cognitive function) to stand up to the kind of emotional abuse these horrible people dish out.

    When the dust settles and we understand the physiological underpinning of ME, do we get to call these people out publicly by name? Name and shame? The world should know these people made money and prestige off of abusing the weak and helpless.

    :mad::mad::mad:
     
  10. TiredSam

    TiredSam The wise nematode hibernates

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    A bully on an ego trip will usually pick the weakest victim they can find, so they end up gravitating towards sick children.

    The tragedy is that well-meaning parents may force these kids into GET with the best of intentions after having received the worst of advice, and some kids who may have improved / stabilised with lots of rest in the early stages are instead put on the road to hell. I remember fuming as I read Lynn Gilderdale's mother's account of how she insisted on her daughter walking 20 minutes a day because "the consultant knew best", and how much she regretted it later when she found out that it usually makes ME patients worse.
     
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  11. TiredSam

    TiredSam The wise nematode hibernates

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    Psychoquackers currently give parents two options:

    A) Follow our advice and risk destroying your child's health still further, or

    B) Don't follow our advice, and be blamed and dismissed in all further interactions with your us, your official health service providers

    What kind of a choice is that to give the parents of a sick child looking for help? And even the parents who choose A) get blamed and dismissed when it doesn't work.

    Sorry, I'm ranting again. Gotta stop starting my mornings like this.
     
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  12. Effi

    Effi Senior Member

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    maybe slightly off topic, but now we're mentioning authority figures... Whenever I hear from someone else that they got newly diagnosed with CFS and get to be sent straight to GET, they usually really want to try it out. Me saying that it's not a good idea has little to no effect, and giving them 'proof' (papers/research/patient experience) only makes them more confused and upset. They have been looking for a diagnosis for so long, being sent home without any answers so many times, that once they get to a psych who 'understands' and 'explains' the 'theory' behind it they are just so happy finally someone is listening. So they go for it, ignoring their body's signals, and start push-crashing like there's no tomorrow. And I get it. But I really want them NOT to do it. How do you get through to someone like that? Especially in a world where people can still organize conferences like the one mentioned above?
     
    Last edited: Aug 21, 2015
  13. TiredSam

    TiredSam The wise nematode hibernates

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    When I started having PEM but before I knew why, of course the first thing I tried was my own intuitive version of GET, I'm sure it's what most people do before they know they've got ME. "I feel ill, I'll rest until I feel better and then build up slowly again". I did it for months before realising that it was the exercise that was making me ill. So if the first specialist I saw had said "that's the right idea, just keep at it", it would have tied in with what I already thought, encouraged me that I was on the right track, given me a plan and a pat on the back for having worked it out myself. After all, it's what works in many other situations, and the idea of PEM after minimal exertion is just too wierd the first time you hear of it (for confirmation of that I just have to remember the bemused and disbelieving faces of the first few people I told about it).

    So I don't know how you would have got through to me after I had been told what I wanted to hear and was stubbornly marching off to the fitness studio. Fortunately none of the doctors I saw had ever heard of ME so they weren't able to give me any advice worse than "it's burnout" or "go to the psychosomatic clinic", following which I gave up on the medical profession and did my own research. I don't know what would have happened if I'd been told I'd got ME and that GET was the right thing to do. Probably have been very relieved and given it a go.

    At my ME self-help group there's a woman who goes jogging whenever she has enough energy. Very nice woman, knows all about supplements and talks like she's swallowed a medical dictionary. I've given up.
     
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  14. Effi

    Effi Senior Member

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    @TiredSam Your experience sounds all too familiar... I agree the best thing probably is to just give up and let them figure it out for themselves. My energy is way too precious.
     
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  15. TiredSam

    TiredSam The wise nematode hibernates

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    @Effi Well I feel I'd always have a duty to try before giving up, but after that I'd give up pretty quickly.
     
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  16. JaimeS

    JaimeS Senior Member

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    Why wait?

    -J
     
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  17. JaimeS

    JaimeS Senior Member

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    You can organize meetings for anything you want. You can organize meetings of the Society for Kicking Puppies, if you like (sooo tempted to invoke Godwin's Law with that one, but I womanfully resisted.)

    My point is that it doesn't mean anybody really wants to/needs to listen.

    It would be one thing if these people were presenting in a church basement somewhere. The idea that these people are presenting at a huge conference that, judging from the number of speakers, has to have hundreds of attendees, is insane. It's like someone presenting lobotomy as a cure for schizophrenia: ridiculous when it was introduced as an idea, fallen out of favor with anyone with a brain, directly contradicted in dozens of studies...

    I guess they've decided to 'teach the controversy'.

    Perhaps someone could organize an effort to send educated people there, to ask pertinent questions of the presenter. Not hecklers, but people who could actually make some salient points? They'd have a captive audience.

    -J
     
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  18. JaimeS

    JaimeS Senior Member

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    Like, "what do you say about the IOM report / the findings regarding SEID in the US, and the classification of the illness by the CDC?" If they claim that this is all politically motivated, you could either mention studies or you could ask what makes those findings politically or monetarily motivated, but the psychotherapist's motives pure as the driven snow?

    Regardless of what I 'want' to believe, the physical model of the illness presents data, has legitimate, scientific studies that show physiological dysfunction, and a variety of experts in actual medical practice standing behind it. Their explanation of the illness is based in the idea that patients are pathologically terrified of movement. This is based on how the practitioner 'feels' about what they observe in their patients rather than actual scientific research.

    ....who to believe? It's such a quandary. I feel so confused and helpless. :thumbsup::lol::lol::lol:

    -J
     
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  19. TiredSam

    TiredSam The wise nematode hibernates

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    That would be an unhelpful cognitive and behavioural response. The questioner would be diagnosed and shamed in public, and the audience would start singing and chanting.
     
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  20. Effi

    Effi Senior Member

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    That is what concerns me! It proves that this is not just some small dissident group, they're pretty much all over the place, and so complacent in their beliefs. I recently heard this from a doctor who attended a similar conference: 'Well we don't know what this disease is really about. It must be in the brain, there is NO biomedical proof whatsoever. I mean, those people (=the biomed crew) keep SAYING there is, but really there isn't. They have nothing to base anything on. Nothing at all.' I asked her if she read the latest research findings that came out this year (Hornig etc.) but she kept saying: 'These findings are useless because they are unable to reproduce the findings! They're just unable! Totally un-able!' When I said this was mainly because of lack of funding, all I got was a blank stare. So it doesn't seem to me like they're going to be changing their mind any time soon. Can't wait for the day science catches up...
     
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