The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Reach for the smelling salts: New paper 2018 to prove that abnormal beliefs cause ME disability (!)

Discussion in 'Latest ME/CFS Research' started by Countrygirl, Mar 3, 2018.

  1. Countrygirl

    Countrygirl Senior Member

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    Well, this new paper is enough to make me reach for my smelling salts.............and to pop another blood pressure pill.............to ward away a fit of the vapours. :D:rolleyes:

    How can there be people who still write this nonsense? Well, may they keep digging their hole into which they should soon disappear.....................

    For the masochists amongst us you can even purchase the full document, while for the mentally well balanced, it could provide a bit of entertainment and a chuckle..............maybe even a bit of sympathy for the misguided individuals who write this stuff.


    [​IMG]
    Biological Psychiatry: Cognitive Neuroscience and Neuroimaging
    Available online 12 February 2018
    In Press, Accepted ManuscriptWhat are Accepted Manuscript articles?
    [​IMG]
    Archival Report
    Fatigue is associated with altered monitoring and preparation of physical effort in patients with chronic fatigue syndrome

    Author links open overlay panelMarieke E.van der Schaaf12KarinRoelofs2Floris P.de Lange2Dirk EM.Geurts5Jos WM.van der Meer4HansKnoop13∗IvanToni2∗
    1
    VU University Medical Center, Department of Medical Psychology, Expert Center for Chronic Fatigue, Amsterdam Public Health research institute, Amsterdam, the Netherlands
    2
    Radboud University, Donders Institute for Brain, Cognition, and Behaviour, Nijmegen, The Netherlands
    3
    Academic Medical Centre (AMC), University of Amsterdam, Department of Medical Psychology, Amsterdam, the Netherlands
    4
    Radboud University Medical Centre, Department of Internal Medicine, Nijmegen, The Netherlands
    5
    Radboud University Medical Centre, Department of psychiatry, Nijmegen, The Netherlands
    Received 8 November 2017, Revised 9 January 2018, Accepted 9 January 2018, Available online 12 February 2018.

    Show less
    https://doi.org/10.1016/j.bpsc.2018.01.015Get rights and content

    Abstract
    Background
    Chronic fatigue syndrome (CFS) is characterized by disabling fatigue, which is suggested to be maintained by dysfunctional beliefs. Fatigue and its maintenance are recently conceptualized as arising from abnormally precise expectations about bodily inputs and from beliefs of diminished control over bodily states, respectively. This study uses functional neuroimaging to identify the neural correlates of fatigue and its maintenance by beliefs during a physical effort task.

    Methods
    We isolate behavioural adjustments and cerebral activity during feedback processing and motor preparation, in the context of a task where CFS patients (N=85) and healthy controls (N=29) produced 30%, 50%, and 70% of their right hand maximal voluntary contraction (MVC), and received directional feedback on performance (e.g. “too little force”).

    Results
    CFS patients showed an effort-dependent behavioural bias towards less effort investment in response to directional feedback for the highest effort level as compared to HC. This bias was associated with reduced feedback-related activity in the DLPFC. These effects were proportional to state-related fatigue and prior beliefs about their ability to perform the task within CFS patients. CFS patients also showed higher activity in the supplementary motor area (SMA), proportional to their state-related fatigue, and reduced connectivity between SMA and sensorimotor cortex during motor preparation as compared to controls.

    Conclusions
    These findings link fatigue symptoms to alterations in behavioural choices on effort investment, prefrontal functioning and SMA connectivity, with the DLPFC being associated with prior beliefs about physical abilities.

    Keywords
    Psychosomatic symptoms
    Effort
    Functional MRI
    Prior beliefs
    Dorsolateral prefrontal cortex
    Supplementary motor area
    Choose an option to loc
     
  2. jesse's mom

    jesse's mom Senior Member

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    grrrr.
    :devil:
     
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  3. nanonug

    nanonug Senior Member

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    Well, no shit, considering CFS patients know very well what happens after effort: PEM!
     
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  4. hellytheelephant

    hellytheelephant Senior Member

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    Words fail me....!
     
  5. Silencio

    Silencio Senior Member

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    How do they get patients to participate in these studies?? Do they lie to them about what is being studied? Clearly they are setting out to prove a hypothesis and make their “results” line up with it. How on earth does this fly at any university?!
     
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  6. cigana

    cigana Senior Member

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    Orwellian
     
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  7. alex3619

    alex3619 Senior Member

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    Given that fatigue is an optional and relatively unimportant symptom, I wonder when they are going to wake up to that? I guess never.
     
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  8. Countrygirl

    Countrygirl Senior Member

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    As a consultant-friend said to me, ME is complex and only doctors with above average intelligence can comprehend it.

    Sadly, this suggest that the majority are ....................rather.........dim. :p
     
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  9. alex3619

    alex3619 Senior Member

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    I think my rule 14 covers this -

    14. Stupidity and ignorance are independent of intelligence. Anyone can be stupid or ignorant about something. The only safeguards are objective facts, investigating claims, and reason. You can also ask an expert, but keep in mind the expert is only less likely to be a victim of stupidity or ignorance.

    The issue here is that stupidity is not defined by intelligence. Its about training, awareness, and taking action to ensure decisions are well founded on evidence and reason. When do doctors have time to investigate things? Doctors are not unintelligent. They do however sometimes fall foul of ignorance and stupidity, if not arrogance. They lack the resources to properly do their job, and this is global. Those who take time to investigate properly are nearly always researchers and have set aside time every week to do this kind of thing.
     
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  10. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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  11. Mel9

    Mel9 Senior Member

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    Nonsense!
     
  12. Sundancer

    Sundancer Senior Member

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    yes, non-sense, the dutch laddies again....

    as how they find their patients, when you google CFS in dutch, what pops up are the websites of the psychobabbleboys.
    Of course there is other information too. But the official information promotes GET and CBT and fitnet and what not.

    in 2 weeks we'll get a new guideline..... I do not dare to hope to be honest.
    And still not heard about Dr Visser, our only ME-doctor. Visited by inspection because he saved an adolescent from being moved out of his home....
     
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  13. Countrygirl

    Countrygirl Senior Member

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    I have posted this on its own thread, but this is an example of the harm inflicted on Dutch patients by the people above:

    Shocking story about the (mal)treatment of a ME/cfs patient

    “Today it’s been 15 years ago since I came home from a Dutch rehabilitation centre. Valentine’s Day 2003, a Friday. I'm pretty sure I have never spoken about what happened during that time. In fact: I bet many of my friends don’t even know I was there. I’ve tried desperately to forget and repress everything, but that never works completely. The nightmares stay. The fear stays too.

    Great despair hit us in 2002. I've never been completely healthy in my life, but after a Pfeiffer infection in 2001 my health got so bad I almost couldn’t go to school anymore. We sought help from my general practitioner, who sent me to a well known facility in Nijmegen. So I went, and without any blood tests, or any other test I was diagnosed with CFS, and I had to join their specialised CBT/GET program because it was really promising. However, I ended up in the control group and had to wait.

    Waiting wasn’t an option back then, because I only deteriorated, and that’s how we got to the rehabilitation centre, they ran a similar program. They told me they took my illness very seriously and that their program consisted of slow increase of activity. They had a success rate of 80% for people with my ‘fatigue complaints’. They were really nice and I was willing to do ANYTHING to stop feeling so terrible, even if that comprised living at the centre during on weekdays for six months.

    And that’s how I got to stay in a room with three other teenagers, as a 15 year old girl. Everything hit me hard… things like the awful folk music from my neighbour, the talking, the activity of everyone… it was never quiet, not even at night. I thought I was too sensitive, too shy, and that because of this I couldn’t join in. I wondered whether the others had the same condition I had, because they could go on all day. I thought I imagined the loud music made me dizzy. Maybe my adaptation problems were mainly the result of being so far away from home. Of course that was part of the problem, but all the stimuli made it a hundred times worse. And those were unavoidable, you were never left alone and always forced to join others, you could never seek out a bit of quiet. I really tried to join in because I didn’t want to be left out (I was a teenager after all), but I was so exhausted and feverish and everything hurt, I just couldn’t do it. It was also forbidden lie down outside of the half hour resting time, so I regularly locked myself in the bathroom and lay down on the dirty floor for as long as I could, simply because I just couldn’t sit up anymore.

    It got way worse after the actual treatment started. I had to make schedules that consisted entirely of 30 minutes for the entire day, and every 30 minutes I would have another activity or a resting period. Each week more activities would be added and rests would be reduced. It took many of those half hours for the psychologists to tell me I must have had a trauma, because no physical cause was found for my illness. That trauma must have being really deep, because it had blocked my energy. I racked my brain, but I couldn’t think of anything.

    At physical therapy, I had to do the same thing over and over again in the same amount of time, but the second time I was always slower. The therapist told me it was all in my head, I thought I was ill and that was why it didn’t work, but I definitely could do it because my body wasn’t ill at all. The leaders were the worst. At least three times a day I was told I didn’t try hard enough. That I just didn’t want to get better. That it was all in my head. I was lazy. I was unmotivated. I should have shown progress by now, so I just wasn’t trying hard enough. I was weak. I cost society money. I was worthless. Just imagine, you would have to hear all that for three months, multiple times a day, when you’re just an insecure teenager. Psychologists, doctors, mentors, social workers, physical therapists, team leaders etc., they all told me this. I did EVERYTHING they asked me, and more. My regime was very tight and I didn’t once let myself stray from the program. Every Sunday evening, when my parent brought me back, I wanted to run away, I wanted to beg that I didn’t have to go back, but I didn't do any of that. I just conceded with a heavy heart. It was the only way to get better. I wasn’t good enough, so I had to try harder.

    It took 3 months, give or take a few days. Three months of hell and three months in which I deteriorated physically and my ability to do things continuously decreased. Mentally, I was convinced I actually was worthless. I could liken my experience to the extreme training a soldier has to endure, where they are being torn down before they are rebuilt. But all I did was break down. Then all of a sudden, out of the blue, I was told they couldn’t help me anymore because I wasn’t getting better. I begged them to keep trying, but no, this was the end. Every last bit of hope I had was smashed to the ground. Later I found out how they got to that promised success rate of 80%: All patients that stayed internally for more than three months were added into the calculation. Patients who didn’t last three months were not included. It was in their best interest to throw out anybody that didn’t improve before the crucial 3 month mark, so they could access more funding from the government to continue their work. So here I was, completely disillusioned and more desperate than ever, standing outside the centre on February 14th 2003. A part of me was secretly relieved that I wouldn't be bullied anymore, but I buried that feeling, because that was an essential part of the therapy, which would help me to get better. How naive I was.

    At home I could finally rest and with the help of my incredible parents I found my self worth again. Only the nightmares stayed - and still haven’t gone away. I freeze up at the doctors because I’m afraid they’ll tell me it is all in my head. I don't just think that, it actually happens on a regular basis, and every time my fears grows bigger still. I developed PTSD because of doctors and psychologists. Because of the centre.

    15 years later I’ve learned a lot more. Afterwards I started reading and researching and found similar stories. I educated myself and with the help of other patients, I found a specialist who was willing to help. Finally I got diagnosed with ME, a disease that has been recognised since 1960, but is still ignored in most countries. I’ve also got POTS, which creates autonomic dysfunction (which affects all systems you're not aware you have, like temperature and digestion).Due to the dysautonomia my blood doesn’t circulate properly and keeps pooling in my legs. I’ve got numerous abnormalities in my blood that causes inflammation values matching that of pneumonia, I’m being haunted by numerous viruses and bacteria, including Lyme disease, and even a muscle biopsy came back with a total of 7 abnormalities. Because of exercise intolerance, the CBT/GET therapy at the rehabilitation centre is extremely dangerous for ME-patients and made me sustain permanent damage. I repeat: Permanent damage.

    I never returned to the level I was before I went there and even now I'm getting worse every year. Thank goodness it’s a very slow decrease. Right now, I hope for recognition from the government and doctors. For good medical help. For money needed for research of ME, because there still isn’t any. I hope this will never happen to anybody ever again. All those hopes still haven’t come true. In fact, they seem further away than ever, because my specialist, the only one who took me seriously, is under scrutiny by the authorities because he dared to stand up for a young adult who was about to be forced into a similar therapy that I had to endure.

    Today I focus on the fact that it has been 15 years since I got released from the rehabilitation centre. 15 years to rebuild myself and to believe in myself again. I survived.”

    Monique

    ME/CVS Vereniging
     
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  14. Sundancer

    Sundancer Senior Member

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    thanks for posting it here too.

    yep, the situation in Holland is ( I think) just as bad as in the UK.
    they are still boasting that CBT will be the answer, and link through to a letter from ( i think) Bleijenberg that states that even though the PACEtrial had some bad aspects, there is loads of research that underpin the thought that CFS patients have dysfunctional beliefs etc...
    well, see the latest bag of *#*#.

    I'll go out for a bit now, the sun is shining and I need to get some air into my head. It does not make me better to get angry about these ... scientists?
     
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  15. Countrygirl

    Countrygirl Senior Member

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    Yes, amazingly, as I look out of my window, the world has suddeny turned from white to green and there is a strange bright orb in the sky,................it is vaguely familiar. For the first time in days, I am going to open the door...............carefully. I think the Beast from the East has eloped with Storm Emma.................all is quiet........and little of the white stuff left................and all the icicles have vamooshed.
     
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  16. Sundancer

    Sundancer Senior Member

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    I've been out!!!!
    the sun was shining, the frost is gone, the birds are singing and I made a walk, 7 minutes, wow!!!!

    ( ah, that must be those dysfunctional believes eh...) But no, since i take B12 there is bit more energy.

    ( plus, now the frost is gone, maybe tomorrow someone will come to unstop my toilet)
     
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  17. Cheesus

    Cheesus Senior Member

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    I wrote to the lead author:

     
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  18. Sundancer

    Sundancer Senior Member

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    :rofl::rofl::rofl:

    good, I wonder whether you get an answer, those dutchies are about as stubborn as Crawley and Wesseley.
    To be honest, I do not have the energy for letters like thta...but applaud it, thanks:thumbsup::thumbsup::thumbsup:
     
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  19. Countrygirl

    Countrygirl Senior Member

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    For @Cheesus --------------------->:trophy: Excellent work. :thumbsup:
     
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  20. 1gooddog

    1gooddog Senior Member

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    Dear God save us. Can you use fatigue, optional and unimportant in the same sentence. There should be a law. No wonder research is going nowhere with psycho babble twits running it.
     
    Mel9 likes this.

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