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.
Discuss the article on the Forums.

Investigating neural mechanisms of change of cognitive behavioural therapy for CFS

Discussion in 'Latest ME/CFS Research' started by Kati, Jul 3, 2015.

  1. Kati

    Kati Patient in training

    Messages:
    5,446
    Likes:
    19,475
    I wish it was good news, but alas.

    http://www.biomedcentral.com/content/pdf/s12888-015-0515-9.pdf

    Abstract

    Background: Chronic fatigue syndrome (CFS) is characterized by profound and disabling fatigue with no known somatic explanation. Cognitive behavioral therapy (CBT) has proven to be a successful intervention leading to a reduction in fatigue and disability. Based on previous neuroimaging findings, it has been suggested that central neural mechanisms may underlie CFS symptoms and play a role in the change brought on by CBT. In this randomized controlled trial we aim to further investigate the neural mechanisms that underlie fatigue in CFS and their change by CBT.

    Methods/Design: We will conduct a randomized controlled trial in which we collect anatomical and functional magnetic resonance imaging (MRI) measures from female CFS patients before and after CBT (N = 60) or waiting list (N = 30) and compare these with measures from age and education matched healthy controls (N = 30). By including a large treatment group we will also be able to compare patients that benefit from CBT with those that do not. In addition, to further investigate the role of endocrine and immune biomarkers in CFS, we will determine cortisol and cytokine concentrations in blood, hair and/or saliva.

    Discussion: This project creates an unique opportunity to enhance our understanding of CFS symptoms and its change by CBT in terms of neuroanatomical, neurofunctional, endocrinological and immunological mechanisms and can help to further improve future treatments strategies.

    Trial registration: Dutch Trial Register #15852. Registered 9 December 2013 (http://www.trialregister.nl/trialreg/ admin/rctview.asp?TC=4311)
     
    leokitten, Esther12 and angee111 like this.
  2. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,550
    Europe
    @Kati I looked at the names on this study. The last name on the list is Hans Knoop. He works at the CFS Centre in Nijmegen (NL) and most patients on dutch speaking forums seem to have been traumatised by his approach. He is a zealous advocate for CBT and still today claimes that this is the only scientifically proven way of curing patients or at least making them a whole lot better. (Although when I read the website he's basing this statement on a study from 2001. Outdated much?) He is still convinced that it's fear of exertion that is holding us back. https://www.radboudumc.nl/Zorg/Afdelingen/nkcv/Pages/default.aspx (cfs info not available in English)

    Let's find a big waste bin and dump this study in it! :whistle:
     
    ahmo and Valentijn like this.
  3. Kati

    Kati Patient in training

    Messages:
    5,446
    Likes:
    19,475
    Yes @Effi aweful paper, and more psycho-babble to come seemingly since they will likely publish the results. I wish patients knew not to enter this study, at all costs.

    And I am posting not because I am supporting this study, I am posting it so others are aware of what is happening.
     
    AndyPandy, mango, Effi and 2 others like this.
  4. Bob

    Bob

    Messages:
    9,846
    Likes:
    33,935
    England (south coast)
    A b-cell-mediated autoimmune disease seems like a good educated guess though!

    @Kati, thanks for posting. The study seems a bit desperate. (Sorry, I can't bring myself to 'like' your post, for reasons I know you understand!)
     
    Indigophoton, beaker, Kyla and 6 others like this.
  5. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,550
    Europe
    Yeah I think it's really important we stay on top of the 'wrong' studies too, just to know what we're fighting!! So thank you for posting @Kati .

    Just wanted to add that Hans Knoop and his 'Center of CFS Expertise' (his wording!) does not 'believe' in the term ME. 'Scientists (which ones?) aren't happy with this term either, as it stands for brain inflammation, which has never been proven.' (Japanese study begs to differ!) 'It is just the patients themselves and the patient organisations who keep on advocating for the term ME.'

    It's baffling how he can still say these things TODAY. With all the latest scientific findings that have come out... I guess he didn't do his homework! I wish we could give him detention! 'Write 100 times: I will not spread lies about cfs. I will not...' lol :p
     
    Kyla, Snowdrop, GalaxiiGrl and 4 others like this.
  6. Kati

    Kati Patient in training

    Messages:
    5,446
    Likes:
    19,475

    i agree with you, it seems like a last ditch effort to save the psychobabble: " Let's prove that CBT has a scientific proof" :rolleyes:. Of course they will carefully pick out their cohort, right? :ill:
     
    Kyla, Cheshire, Effi and 1 other person like this.
  7. Bob

    Bob

    Messages:
    9,846
    Likes:
    33,935
    England (south coast)
    Yep, that's exactly what I was thinking!
     
  8. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,550
    Europe
    I wouldn't be surprised if they used the broadest criteria possible, just to get a better outcome.

    Mind you, that clinic also treats fatigue after cancer treatment with CBT, so I guess their only criteria is 'fatigue in any way, shape or form'. Then maybe massage the numbers a bit, and BOOM: scientific proof is born! :rolleyes:
     
    Kyla likes this.
  9. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,550
    Europe
    Just picturing psychobabble on life support. Doctor: 'does it have a Living Will? Where are its parents?' [psychobabblers shuffling in the background, mumbling something about not wanting to let it go] lol :p
     
    Last edited: Jul 3, 2015
    SOC, GalaxiiGrl and Kati like this.
  10. duncan

    duncan Senior Member

    Messages:
    1,982
    Likes:
    4,299
    Is there an assumptive close folded into that title? Isn't that the preferred gimmick of used cars salesmen?
     
  11. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,283
    Likes:
    45,782
    If it's not being reported in the Dutch media and didn't involve Dutch researchers, then the prevailing view is that it didn't happen.
     
    SOC and Bob like this.
  12. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,550
    Europe
    that seems to be the trend in belgium too :cautious:
     
    Valentijn and Bob like this.
  13. Dolphin

    Dolphin Senior Member

    Messages:
    10,635
    Likes:
    28,042
  14. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,491
    Waiting list control isn't great.... but is also better than normal for these studies in CFS.

    I wonder who is funding it.
     
  15. Dolphin

    Dolphin Senior Member

    Messages:
    10,635
    Likes:
    28,042
    From Twitter https://twitter.com/CoyneoftheRealm/status/616883455671074816:

    In reply to this comment on the trial:
    James Coyne is an influential psychologist (with no major connection with ME/CFS)
     
    Indigophoton, Simon, Denise and 7 others like this.
  16. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,491
    Yeah, this sort of study is unlikely to be entirely negative - two groups of people having different experiences are likely to have some different neurological responses.

    PS: Hi Fire!
     
    Simon and Dolphin like this.
  17. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,491
    It says that they will be using actometers for this, although that's listed separately from the primary and secondary clinical measures. I wonder if they're trying to set that up as something other than an outcome measure (mediator?) in case it comes back negative again, but keeping it there in case they get a positive result this time?

    If the best things about this and PACE were combined, and then results weren't spun, I think that you'd have a decent trial. The waiting list control is a bit rubbish.
     
    Valentijn and Dolphin like this.
  18. leokitten

    leokitten Senior Member

    Messages:
    579
    Likes:
    1,876
    Maryland
    Ugh every time I read about CBT I just sigh. If researchers did trials of CBT on people with any chronic debilitating illness the results would always show some statistically significant improvement. I'm certain even with MS or Parkinson's they could show an improvement and publish this as "effective treatment".

    Pick any chronic ailment and I'm sure the results would be the same. It's not a real treatment its just a therapy to help people cope with the reality of living with a chronic illness, of course it's going to improve things slightly but that's not a treatment!
     
    Valentijn, Cheshire and geraldt52 like this.
  19. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447
    Dolphin likes this.
  20. Dolphin

    Dolphin Senior Member

    Messages:
    10,635
    Likes:
    28,042
    A trial of a similar form of CBT to the one used in King's College, London (and PACE Trial) on multiple sclerosis led to patients saying they had fatigue scores better than the scores healthy people have!

    Free full text: https://www.researchgate.net/profil...is_fatigue/links/02e7e526ab2fe43ae8000000.pdf

     
    Scarecrow, Simon, Valentijn and 3 others like this.

See more popular forum discussions.

Share This Page