Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Unhelpful cognitive and behavioural responses are associated with symptoms in adolescents with CFS

Discussion in 'Latest ME/CFS Research' started by Dolphin, Aug 31, 2015.

  1. Dolphin

    Dolphin Senior Member

    (I'm not a fan of these views but it can be useful to know what is being said)

    Valentijn and Hutan like this.
  2. Hutan

    Hutan Senior Member

    New Zealand
    Was going to start a (logical) rant here. But it's not worth the effort. What self-serving drivel.
    Valentijn, TiredSam and Effi like this.
  3. Sean

    Sean Senior Member

    Dishonest games with words.
    Valentijn, Hutan and Wildcat like this.
  4. Effi

    Effi Senior Member

    I had the exact same reaction! :lol: Almost started to write something but then - meh it doesn't even look like they tried to come up with anything at all. :meh:
    Hutan likes this.
  5. Wildcat


    Criminal waste of research funds.
    Hutan and Sean like this.
  6. TiredSam

    TiredSam The wise nematode hibernates

    I'm running out of rants for these quacktards too. Their output is on a level with astrology. How on earth did they ever get taken seriously in the first place?
    Valentijn, John Mac, A.B. and 2 others like this.
  7. A.B.

    A.B. Senior Member

    While I question the sanity of the authors, the political establishment and insurance industry can point to these studies and justify their neglect of patients. The psychosocial narrative has some credibility in the eyes of people who have only a very superficial understanding of the topic. When it eventually runs out of credibility, the political establishment and insurance industry can deny any wrongdoing as they were just following the "science" and "evidence".

    They needed a phase 3 trial to justify these therapies, and that's why PACE wasn't allowed to be the null result it was.

    It's tobacco science where some individuals seem to genuinely believe the narrative.
    Last edited: Sep 1, 2015
    Woolie, Mij, JaimeS and 6 others like this.
  8. Bob


    England (south coast)
    So if a person has increased problems engaging in activity at "time 1", because of their symptoms, then that person is more likely to have decreased their activity levels eight weeks later.

    Or, to put simply, the more ill somebody is, the more likely they are to moderate their activity levels?

    Wow, amazing insights here! Who'd have thunk it? I'm bowled over with shock and surprise.

    And surely the same wouldn't apply to all other chronic illness for which symptoms have an impact on activity levels?
    Woolie, Cheshire, Mij and 6 others like this.
  9. JaimeS

    JaimeS Senior Member

    Silicon Valley, CA
    That's an incredibly descriptive way of putting it. I like that. :) ( = "will steal it in the near future") ;)

  10. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    This repetitive kind of weird social 'theory' of unexplained 'fatigue' seems harmless enough, if you don't know that inside CFS, are individuals seriously, or even gravely ill. We therefore need responsibility in science, not to cause further harm to the patients.

    Once you know that, then you can see that a failed theory (see PACE trial and other large European CBT trial previously) targeted against disabled adolescents is potentially dangerous for the kids (who cannot defend themselves), and their parents too. With psychiatry, parents can be forced into accepting a psychobehavioural management programme through state coercion. If they don't agree, they may face having their kids taken away or are even jailed for allegedly 'harming' their kids by simply going against a psychiatric approach and seeking a biomedical one! This happened not long ago in the UK.


    A multi centre, world wide psychological health study should be undertaken to evaluate consequences of psychiatry managing ME CFS in the countless number of organically ill patients with ME CFS, who report getting a rough deal when misdiagnosed by psychiatrists:

    Perhaps a good follow up study should be entitled:

    Iatrogenic PTSD in CFS: Negative outcomes of disbelief in organic causes of CFS by health care professionals using F48.0 and Fukuda Chronic Fatigue Syndrome criterias.

    Discovering children and adults without mental illness with CFS, can go out to develop mental illness (through the use of wrong therapy that worsens symptoms), would be a rather shocking but inevitable discovery.

    Hence, no one has ever been studied who has been abused by NHS professionals as children or adults, because if the paper is conceived, nurtured and produced it would expose state funded abuse of its citizens.

    What happens when you use biology and not psychiatry in paediatric CFS? How about this study which shows a likely infection as the real reason patients fail to recover from CFS, often following an infection!


    What a horrible, unnecessary tragedy.

    The CDC caused some to take advantage of 'theory' by creating CFS, a theory in itself. A centre of disease control, allowed a disease to become uncontrolled by making the diagnostic criteria far too weak and sticking with it, never seeing the error of it's ways. Naturally there will be people who can benefit from the 'doubt' of the legitimacy of the organic nature of the symptoms of the disease within CFS, and of course, the people to profit, literally, are the mental health profession. A profession that never once needs to prove that their theories have any evidence of being legitimate.

    With no evidence, any theory can be created (including BPS) and any treatment can 'fix' the malady, when the patient needn't demonstrate abnormal physical signs in the first place (Fukuda CDC CFS), to get diagnosed or is even actively mentally affected at the time of diagnosis of the 'fatigue' (British F48.0 CFS allows for depression).

    When the outcome for the most severely affected is a fatal disease (some die of 'CFS') and others is incarceration for life in their homes in bed or their house unable to stand up or walk, then this 'alternative opinion' that the condition isn't organic disease becomes is an incredible, undeniable, wrong doing. Naturally, governments approve of CFS psychiatry, some even award it. With no proven cause (via no appropriate research) no cause never be found of any 'past mistake' that may or may not have occurred long ago. Via theory of mental health problems maintaining 'fatigue' the dumbed down citizens will never know, or even care, if you raise doubt over the legitimacy of their symptoms be it in trash media, or peculiar research journals who's level of review standard for 'science', is appalling (nb: researchers can pay to publish, and be approved in weeks not 6 months of robust peer review that should be necessary manipulating society with psychiatric theories of biomedical disease, not coded as psychiatric - which is both ME and CFS).

    I wonder how many people will continue to be pointlessly harmed through a misdiagnosis of psych CFS, when they never had 'it', as 'it' never existed in the first place in the people accused of having it? 1 more, or millions more?

    Perhaps until then, as multiple research studies published in CFS show the disabling effects can be as, or more debilitating than MS or Heart Failure and in addition to this there are 5000 biomedical research papers on CFS not having a psych origin, then those odd folk who believe all cases of CFS persist by the mind and ME can never exist as a neuro immune disease within CFS, could consider taking their 'theories' elsewhere, far away where no harm can be done to patients by potential 'unhelpful cognitive and behavioural responses' of their own.
    Last edited: Sep 1, 2015
    Sean, Hutan, TiredSam and 2 others like this.
  11. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    I did it for you. :hug:
    Sean, Hutan, TiredSam and 2 others like this.

See more popular forum discussions.

Share This Page