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Video: "Understanding and managing CFS in an interpersonal context" (Alison Wearden, psychologist)

Discussion in 'General ME/CFS News' started by Dolphin, Mar 4, 2015.

  1. Dolphin

    Dolphin Senior Member

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    (Not a recommendation)

    Somebody has drawn my attention to the following. I haven't watched it but I can easily imagine it will be annoying given what Alison Wearden usually says about ME/CFS.

    (47 minutes 27 seconds)
     
  2. alex3619

    alex3619 Senior Member

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    I am only several minutes in, and so far, either directly or by implication, there are very many provably false things, and either direct or implied fallacies. Its not worth watching unless you are interested in this kind of psychological material.

    There is a nice slide from some old Komaroff research showing that using SF-36 people with CFS are typically (and not for all roles) worse than diabetics or those with MS.

    At about 11 minutes the model is revealed. Its a deconditioning avoidance model, typical psychogenic nonsense.

    There are lots of analogous inferences. We think something is happening in some other condition, so we think this applies to CFS.

    A lot of this is based on the Expressed Emotional methodology, from the 60s, but the explanation is unclear as it switches from empirical to theoretical comments. I do not know enough about this to comment specifically, but many such techniques fall into the psychobabble category.

    There is repeated failure of disambiguation between association and causation. This mostly by implication, not actual statement. What is surprising is that some of these claims may be somewhat testable, that is a predicted causative effect might, in a well designed study, be capable of refutation, and failure to refute may uphold it. I wonder why they don't do so?

    They are looking at creating interventions for careers and significant others. In other words, CBT on people supporting CFS patients.

    One interesting comment at the end is that they produced educational packs, sent them to GPs, and nearly all were lost. Educating GPs and patients is likely to be problematic.

    There is almost nothing of much use in this video except a few snippets. For anyone wanting to see how psych goes off the rails then this might be of limited use.

    PS Lots of mention of the FINE trial, but no mention of its failure to help.
     
    Last edited: Mar 5, 2015
  3. jeff_w

    jeff_w Senior Member

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    Ridiculous, ignorant drivel. I couldn't watch the whole thing. I left a comment and down-voted the video.

    More comments and down-votes would be a good thing.
     
    Wildcat, helen1, SOC and 4 others like this.
  4. A.B.

    A.B. Senior Member

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    How psychologists engage in self deception and need patients to confirm their delusions (of being able to treat illness with mental interventions).
     
    Last edited: Mar 5, 2015
  5. Snowdrop

    Snowdrop Rebel without a biscuit

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    It seems the video was published on March 4 2015 by the BPS media centre.

    Given the recent IOM report and the Hornig/Lipkin study results this looks like an attack on the idea that this disease is physical and organic. Not that that's explicit. It just seems like they've got their backs to the wall and are lashing (acting?) out.

    What's interesting is there are almost 2,000 subscribers to the BPS media centre and if you click on their link on the video page it brings up (what I would call a wall of infamy) erm. . . other videos in a similar vein.

    Perhaps we need our own youtube channel.
     
    Last edited: Mar 5, 2015
    catly, Wildcat, GracieJ and 4 others like this.
  6. Esther12

    Esther12 Senior Member

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    LOL.
     
  7. alex3619

    alex3619 Senior Member

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    This is probably an idea worth looking into. ME-CFS alert is currently our only serious attempt at this. Hmmmm .... does anyone know what is happening with them?
     
    catly likes this.
  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    It just occurred to me that there is already lots of material out there for a youtube channel.
    It just needs to be gathered up.

    There are issues though. Since we as a group of patients don't represent an ideology as per SMC/BPS agreement as to what goes into the channel needs to be negotiated/hammered out. There's enough out there that sticking with tight agreement (non-controversial) stuff would be adequate. Having an statistical analysis of the PACE trial (tight clearly supported science as to why the trial design is problematic) would be helpful.
     
  9. alex3619

    alex3619 Senior Member

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    Lets not forget the excellent PACE analysis videos. Doh. Graham and others have put a lot of time into those.
     
    catly, Hutan and peggy-sue like this.
  10. Gijs

    Gijs Senior Member

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    Maybe it is an idea to create a blacklist with all doctors, professors etc... who said ridiculous things about CFS/ME/SEID with a quote and put it on the internet. So when CFS is proven to be a disease everybody can see how stupid they are.
     
  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    I wouldn't consider doing that just yet.

    But their day will come. They have powerful interests backing them. And a general public that is ill informed and confused about ME/SEID/(Ramsay's). There are many things that we could do however.

    What we really need is more people who understand the history/politics/science and who are well and full of energy to help implement various ideas.
     
  12. alex3619

    alex3619 Senior Member

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  13. Grigor

    Grigor Senior Member

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    You know what the worst about it all is that even me as a 8 year patient find certain things not too bad. As in she does mention many symptoms correctly and I agree that us lying on our beds and sofas ain't helping us .
    The fact that we can't do otherwise is another thing. But it's for sure not good.

    When I got Ill I was a professional ballet dancer. Then I did turn ill but with me being ill I still was able to do some things because of the leftovers of what my body was able to do.
    That's 8 years ago.
    After 3 years I improved a lot. ( maybe what the study of Lipkin was talking about ?? ) and could maybe 30 % again.

    Now in 2013 I relapsed beyond repair it feels. 3 months in the dark . Etc. Housebound for almost 2 years. And I always wonder . Did I somehow relapse harder because my body is in worse shape then when I got Ill in the first place??

    Obviously it's normal our bodies are not in good shape. I do worry about it .

    Then in other parts in the video she talks about things and I'm like. Uhhhhh utter bullocks and she lost me.

    But ....there is one big but. GPs who have no clue about the illness will skim through maybe the symptoms and say. Oh yes this lady knows a lot about it .
    And will consider her stuff very believable.

    There is always a little voice inside of me that says. What if.....what if there is some truth to what she is saying. What if I'm waisting my time on the bed . Being stubborn and all.

    But when I think of Mark VanNess I bought and believed and recognised everything he was saying. And feel that it makes total sense what he was talking about
     
  14. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Grigor

    I commiserate. I was never an athlete so the loss of physical function must be especially terrible for you.
    I was however a very independent person and very strong minded and curious.
    I have lost much of my cognitive functioning along with physical from this disease.

    And it is tempting in those times when you have rested to the point that PEM is under control to think that you can do more.
    Because we so badly want to. That's what makes the messages of people from the psychobabble school so pernicious and hurtful.
    We want so badly to carry on.
     
    Hutan and worldbackwards like this.
  15. Grigor

    Grigor Senior Member

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    Well the biggest loss now is not being able to do normal things like going to the supermarket. Or visit friends. Heck leaving the house.

    I do feel I need more guidance when it comes to my activity . yet I would have loved Mark VanNess living in Amsterdam.
    When I listen to her I do recognise things.
     
  16. zooii

    zooii

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    Hi,
    I got fibromyalgia and Me/cfs (chronic fatigue syndrome) diagnosis 16 years ago and have been mostly bedridden since then with terrible pain syndromes etc. I saw you went to Meirleir and I have done so myself. I paid loads of money to him and his lab for blood test and got no treatment at all from him, tried to call him so many times. When I first got ill there were other names in the Me field that claimed to be able to treat this condition, Dr Paul Cheney for example, and after all these years new doctors has taken an interest and also claim to be able to cure us. Meirleir is one of them and the desperate Me patients cling to him in desperation. The truth is Me/cfs is only a diagnosis of certain symptoms but don´t say what causes this. What causes it is various kinds of infections! parasites, protozoa, viruses and bacteria mainly and sometimes mold and fungus like candida possibly. Most Me patients think they mainly have viruses if they believe in infections, although I think lyme and co infections could be a more common cause than most people think. These infections are intelligent and can affect the brain so much that we don´t think logical anymore. We go look for answers anywhere else than were we need to go. Meirleir is not a lyme professional or llmd and don´t know how to treat lyme disease. Dr Kleeman and the doctors in Augsburg are experts on lyme disease and that is probably where you need to start to find out if you have lyme. The western blot is the first test to take to find out. There are also other test and darkfield microscopy that we have to find ourselves by googling etc. In Augsburg you can also get test for other co infections that dr Kleeman don´t do I think. The crash is because the we don´t have enough healthy blood cells because they are infected with infections that can live in the blood cells for periods of time and then they destroy the blood cells. So we don´t have enough blood and also the mitochondria is dysregulated somehow. I am listening to the crash interview above that you posted right now, so just a note on that. Most of the time anaerobic exercise is the way to go if you are not bedridden, like easy gym training but not running for example. Everyone with Me knows this, but it does not cure anything.
     
  17. helen1

    helen1 Senior Member

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    Please break up your writing into small paragraphs @zooii. It's very difficult to read unbroken text. Thanks.
     
    Sean likes this.
  18. Hell...Hath...No...Fury..

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

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    I find this concept quite sinister.

    Could just imagine them all sitting round a table pondering. 'How can we make them suffer a bit more... Oh i've got it. We'll infiltrate the remaining few people they have left in the world they can trust (for those who still have it) and we'll take that away from them too. Stripping them of all hindrances to their much needed re-programming.'
     
    Sean, Hutan, Wildcat and 3 others like this.
  19. Wildcat

    Wildcat

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    Alison Weardon has been in the forefront of psychologising ME for decades, and has been given many millions of pounds to do so.

    In 2004 the uk government earmarked £11 for ME ... actually for vaguely defined cfs. 5 million went on starting up the CBT/GET Clinics, £1 point 6 million went to white sharpe and chalder for the pace trial. Pace ended up costing over 5 million, with 1 million supplied by the Dwp.

    Over £2 million was given to Alison Weardon for the Fine Trial, nurse lead 'pragmatic rehabilitation' for severely sick patients, ie cbt get. Which was a total failure. Alison Weardon will not give up her psychologisingw crap how ever many times she is proved wrong. And what is the BPS playing at.... indulging an ambitious psychologist by promoting discredited theories.
     
    Last edited: Jun 25, 2015
    meandthecat, Roy S, Valentijn and 2 others like this.
  20. worldbackwards

    worldbackwards A unique snowflake

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    So do I, but desperate as well. You can imagine them watching for someone reading a suspect article somewhere and then jumping on them out of the bushes to correct their false beliefs. You can't brainwash the whole world.
     

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