Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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The PRINCE Secondary Study: Persistent Physical Symptoms Reduction Intervention (CBT trial)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Nov 30, 2016.

  1. Dolphin

    Dolphin Senior Member

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    This trial is not on ME/CFS specifically but the 1st case that I will post will involve somebody with the condition. It is led by Trudie Chalder, one of the principal investigators of the PACE Trial.

    There is a lot more information at the following link:
    https://clinicaltrials.gov/ct2/show/NCT02426788
     
  2. Dolphin

    Dolphin Senior Member

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  3. Keith Geraghty

    Keith Geraghty Senior Member

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    what we are witnessing here is dogma and template science

    these are the PACE authors eg Chalder just using the PACE template and going ahead with in for MUS - which includes CFS, but she is aware just how controversial her PACE trial debunked finidngs are, so she's keeping the CFS/ME bit on the down low,

    MUS is part of the psych lobby dogma - that in general practice and acute care many patients have unexplained symptoms

    what these people wont tell you is things like this; ive seen patients have heart conditions in hospital just as MI, thats totally unexplained; Ive seen other patients go into coma for a few days, come out and be totally unexplained --- the narrative creation is of this patient with persistent physical symptoms who has complex BPS issues that can be changed with CBT intervention --- the template and dogma has been set in place, the same people are just insistent on proving it, promoting it and moving wide

    its rather shocking just how much research funding is going into this - to the researchers whove produced some of the most controversial RCTs ive ever come across
     
    Last edited: Nov 30, 2016
  4. Keith Geraghty

    Keith Geraghty Senior Member

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    conditions lumpted in MUS
    medically unexplained
    fibromyalgia
    PoTS
    non-cardiac chest pain
    CFS
    IBS
    functional neurological
    chronic pain
    hyperventilation
     
  5. Sean

    Sean Senior Member

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    No, there isn't.
     
    Last edited: Dec 1, 2016
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  6. Snow Leopard

    Snow Leopard Hibernating

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  7. Sean

    Sean Senior Member

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    I think we are now passed mere dogma with the BPS school, and well into cultish savagery.
     
  8. actup

    actup Senior Member

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    The more I read about the Wessely BPS school the stronger my suspicion becomes that we are dealing with a highly organized 'soft' eugenics movement spearheaded by the Psychological Medicine Departments at QMUL and Kings College with the backing of powerful political players for the benefit of private insurers and a number of western governments. The Wessely school is not made up of researchers as much as propagandists which may be why they can't research their way out of a paper bag. So why is the UK in the forefront of this movement? I'm guessing it's much harder to run these BPS experiments in the US with it's notoriously complex network of health care providers and decentralized healthcare. More like herding cats compared to the centralized NHS.

    The Simon Wessely school (QMUL) worked closely with the the CDC for many years and I suspect this relationship has continued with the NIH. This wall of bullshit has been very carefully built over almost thirty years and won't fall easily because of it's powerful backing from insurers, governments and God only knows who else. The UK BPS school can get caught out in nonstop lies and fraudulent research yet continue to get funding.Too much is at stake for a number of very large economies.

    This btw may be how they build this wall of BS -really worth the read:

    http://quillette.com/2016/02/15/the-unbearable-asymmetry-of-bullshit/

    As a US citizen I have zero confidence in the NIH. I suspect their goal is to delay useful research on me/cfs as long as possible and sureptitiously follow the UK game plan. Again the stakes are very high.

    The average SSDI( social security disability- federal) payment in the US for 2016 was 1,166 dollars per month- http://www.disabilitysecrets.com/how-much-in-ssd.html#. If 2,000,000 pwc in the US were to receive a 1,166, usd that would total 2,332,000,000 dollars per month or almost 28 trillion dollars per year.

    This doesn't include costs for medicaid(state health care assistance), ebt cards for food (state), medicare payment coverage(state), housing assistance(federal/state), utility subsidies(federal/state/private) and medical transportation for those who qualify. And of course there are the private disability insurance payouts.


    A conspiracy theory that's been swept into the fact bin?

    http://www.spectator.co.uk/2016/04/the-return-of-eugenics/
     
    Last edited: Dec 1, 2016
  9. Paintmyturquoise

    Paintmyturquoise

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    What a waste of research money
     
  10. trishrhymes

    trishrhymes Senior Member

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    I think an awful lot of this garbage is being done by psychology Masters and PhD students who haven't a clue about medical diagnosis and are being brainwashed in BPS beliefs and unscientific methods like p-hacking (collecting loads of questionnare data, sticking it in computer stats packages and searching for the odd correlations that happen by chance to fall below the magic 5% level they've been told means it's significant) and interpreting spurious 'significant' correlations in the light of the BPS model.

    They are being taught that this is good scientific method. They are in a sense, victims of the BPS fanatics, being brainwashed with false beliefs that what they are doing is science.
     
  11. rainbowbluebells

    rainbowbluebells

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    I'm the person who wrote the blog post. Although the trial specifically wasn't for only M.E - I was referred to the trial because I have M.E. I believe that my consultant, who is a specialist in connective tissue disorders, does not know much about CFS and thought he was only sending me for "normal" CBT, when he found out I was pushed to do exercise, he was genuinely shocked.

    Those who have POTS, IBS functional neurological symptoms etc - these people are just as neglected as we are, and there's nowhere near enough funding into these very physical disorders. I have longstanding severe IBS, M.E, Fibromyalgia + chronic pain, Lupus and allergic disorders inc asthma and CBT/GET is an absolute sham, this was GET through the back door - has only made every single one of these illnesses worse. Unfortunately at the time of going into the trial, I didn't know much at all about these illnesses and was so desperate to get better that I believed everything that was said, and wholeheartedly followed the booklet and instructions given to me. As a result I now have not seen the outside world for over 4 months. I don't want any more people to suffer like this.
     
    Last edited: Dec 1, 2016
  12. rainbowbluebells

    rainbowbluebells

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    @Keith Geraghty
    Keith, the booklet I was given during the trial is very odd. It tries to somehow "scientifically" explain how these symptoms seen in PoTS and Fibromyalgia are real, but then gives us such gems as "When Tony tries to move his left leg it feels weak. However, when he focuses his attention on moving his good right leg, the power comes back to his left leg and he is able to move it again. This suggests that the brain (nervous system) is having a problem in sending a message to the left leg. So, it’s like a software problem rather than a hardware problem. Because the left leg is able to move normally it shows that the leg is not physically damaged i.e. the body structures are in proper working order. For those familiar with computers, it can be helpful to think of the body systems like a ‘software programme or operating system’ that runs on computer (e.g. Microsoft Windows, Word, Excel). The physical body parts (e.g. bones, muscles, internal organs etc.), are like the computer itself. So, when there is a problem with the ‘software’ (i.e. the body systems) there is not much point in looking at the hardware (i.e. the physical body) to try to fix it." Erm..what?

    Even more dangerously - "People can sometimes find that increasing an activity or doing more may lead to an increase in symptoms. This can make people think that they are making their condition worse. Let us reassure you that while it is common for symptoms to get worse to start with, as you repeat the activity, or even gradually increase it, before long any worsening of symptoms will fade. The important thing to remember is that you are not causing damage if you have a balanced weekly schedule of activities."
    I even remember reading a sentence which says if you rest for 24 hours your body stops producing energy or something. There are 12 chapters..looking at it now I am quite shocked I was taken in by it
     
  13. trishrhymes

    trishrhymes Senior Member

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    That's odd they used that example. It has no relevance to ME. But I've come across exactly the same story being used to 'explain' that irritable bowel syndrome is a product of the mind in the same way. It was on an online free course under the FutureLearn platform run by a university, I forget which one. The whole thesis of the course was about using psychotherapy to 'help' patients get better. No mention of low FODMAP diets, or other physical factors or drug therapies. I was so cross I wrote several comments on the student forums saying so.
     
  14. rainbowbluebells

    rainbowbluebells

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    That is true, but also..the fact that if there is a problem in the brain/nervous system sending signals, then by their own analogy..that actually is a "hardware" problem?! Since when is the brain and nerves not a physical organ?! If the brain is having trouble sending signals, then that's a physical problem. Their software/hardware logic is one of the weirdest pieces of "science" I've ever come across.
     
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  15. soti

    soti Senior Member

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    and they tut tut about "dualism"!

    really shocking.
     
  16. daisybell

    daisybell Senior Member

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    @rainbowbluebells it sounds like the booklet actually contains medically incorrect and unsubstantiated information. I wonder what would happen to a formal complaint? The problem of course is the energy required in making the complaint...
     
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  17. worldbackwards

    worldbackwards A unique snowflake

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    If you've had GET, this isn't news.
     
  18. Esther12

    Esther12 Senior Member

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    Best wishes to @rainbowbluebells for some steady improvement now that you're out of that system. Sorry to hear you went through it.
     
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  19. taniaaust1

    taniaaust1 Senior Member

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    I wish you could sue them for harming you with their lies (unsubstantiated information). They should be held accountable for causing serious harm to people .. and I see it is serious harm when they've caused someone to end up housebound for months.
     
  20. Luther Blissett

    Luther Blissett Senior Member

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    @rainbowbluebells So sorry you have to go through this.

    I hope it is some consolation that you have been heard, and your warning is being listened to.

    I wouldn't be shocked that you were 'taken in by it', these people are after all experts at manipulating thoughts, people and systems to get what they want.

    You were treated badly by people you trusted, but that doesn't mean you are/were wrong to trust people, you are ill and shouldn't be expected to have to do deep background research on people.

    :hug:
     

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