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Open University of Oxford: CFS study: Researching the biochemistry of Chronic Fatigue Syndrome, closes 30th Dec 2022

Discussion in 'Recruitment into current ME/CFS research studies' started by Andy, Nov 30, 2021.

  1. Andy

    Andy Committee Member

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    Currently I can't find out any further details than given here. There doesn't seem to be any participant information sheet available, or details of who exactly is running this study. Red flags for me are that they refer to CFS, not ME/CFS, and on the Facebook post (which confusingly doesn't seem to exist on the Lindus Health Facebook page, they refer only to Chronic Fatigue.

    "Chronic Fatigue Syndrome can be disabling for sufferers. Despite this, research into it is scarce, and biological reasons for symptoms are poorly understood.

    This study will assess brain and muscle biochemistry of participants using magnetic imaging in order to better understand changes that may be related to fatigue.

    The study is looking for people who have a diagnosis of Chronic Fatigue Syndrome and who are over 18 years old. The study will involve 1 remote screening discussion and 1 in-person visit to the research site at the University of Oxford which will involve an MRI scan. You will receive £50 for participation."

    https://www.lindushealth.com/research/cfs-study

    I spotted this via this Facebook post (screenshot below)
    Screenshot 2021-11-30 10.34.26.png

    As I say above, I can't find this post on the Lindus Health Facebook page, https://www.facebook.com/LindusHealth/. I have no explanation why not.
     
  2. CRG

    CRG Senior Member (Voting Rights)

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    Lindus are a start up - https://find-and-update.company-information.service.gov.uk/company/13298185 incorporated only in March this year, apparently as a new entrant into the medical trials recruitment business - there are other established players. Anyway looks like Lindus has some way to go before it's a 'smooth' operation. With a closing date of Dec 2022 and only 20 participants to recruit, looks like they are putting any business they are getting up on their front window.

    The trial does not as yet appear on the CAG register https://www.hra.nhs.uk/planning-and...ies/confidentiality-advisory-group-registers/ - see the >2013 pdf
     
  3. CRG

    CRG Senior Member (Voting Rights)

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  4. Wyva

    Wyva Senior Member (Voting Rights)

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    @Andy The missing Facebook post may be due to current issues with FB. I also posted something on my ME/CFS FB page today and it disappeared after a short time. It still exists though because I'm getting a few likes but it is not visible to me when I look at the FB page with my admin account or my personal account. However, this is only the case on my laptop, I can still see it on my phone. This may or may not be the same reason why you can't find the Lindus post.
     
  5. Ash

    Ash Senior Member (Voting Rights)

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    Yeah. This terminology doesn’t scream genuine concern. Actually I wouldn’t trust them as far as I could throw them, which as you can imagine is significantly less far than average due to you know what.
     
  6. Solstice

    Solstice Senior Member (Voting Rights)

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    Hasn't Oxford University also been historically crap for us?
     
    Ash and Peter Trewhitt like this.
  7. Milo

    Milo Senior Member (Voting Rights)

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    Usually for research such as these, there needs to be ethics board approval- if you remember the Lightning process in Norway failed there.

    if someone is interested, usually there is a contact name and there is a screening process (hopefully) along with an informed consent to sign, which would provide further information. The principal investigator’s name should be available, and you can ask questions directly.

    I’d be most interested in knowing
    1) who is doing the study
    2) whether they have a solid ME expert in the team
    3) what case definition they are using and whether they require a doctor diagnosis
    4) whether they are looking for a mix of people, men and women, young and old, and early disease or prolonged disease (heterogeneity can be a problem)
     
  8. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Ash, CRG and MSEsperanza like this.
  9. Andy

    Andy Committee Member

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    I've been passed further info about this study.

    It is one of two studies being run by Beata Godlewska, https://www.psych.ox.ac.uk/team/beata-godlewska
    Who is part of Prof Philip Cowen's Clinical Psychopharmacology group and collaborates with Prof Catherine Harmer, exploring her cognitive neuropsychological model of drug action in depressed populations.

    It involves an MRS (looking at brain chemicals) taking some creatine, cognitive testing, questionnaires (possible blood-taking, if you give permission) etc

    This is the list of members of the team she is in:

    Professor PJ Cowen
    Dr Beata Godlewska
    Dr Betty Raman
    Dr Ann Sharpley
    Dr Will Clarke
    Dr Monique Andersson
    Dr Brian Angus
    Dr Marieke Martens

    Cross posted with Peter above.

    ETA: Important information kept, mostly a format change.
     
    Last edited: Dec 1, 2021
    MEMarge, Ash, CRG and 2 others like this.
  10. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Philip Cowen
    PROFESSOR OF PSYCHOPHARMACOLOGY
    Dept of Psychiatry, University of Oxford

    See https://www.psych.ox.ac.uk/team/phil-cowen

    He is a psychiatrist with historic links to Kings College, London. His research interest seems to primarily relate to psycho pharmacology of depression. Professor Cowen sits on the NICE guideline panel on anxiety and the Medical Research Council Neurosciences Board.

     
    Lilas, Ash, Wyva and 3 others like this.
  11. Ali

    Ali Established Member

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    First post! Looks like Peter Trewhitt was right, this is Phil Cowen's study.

    What I didn't realise was that the funding includes Long Covid too.
     
  12. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Given the use of the term CFS and the prominence of the idea of fatigue, one wonders if this will result in a preselection of very specific subjects, which along with the small sample size makes how they define ME/CFS and which diagnostic criteria they use very critical in ensuring a representative sample.

    Also relevant is do their long Covid subjects meet any ME/CFS diagnostic criteria or not?
     
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  13. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Seems to match.


    Research summary

    "Chronic fatigue syndrome (CFS) is a common and debilitating condition whose causation is not well understood. Many of the symptoms of CFS suggest an underlying brain dysfunction. In a previous study using magnetic resonance spectroscopy (MRS) we identified a number of neurochemical abnormalities in CFS patients in a brain region called the anterior cingulate cortex (ACC).

    "Some of these abnormalities are potentially remediable by dietary treatment. However, biochemical findings in the literature in CFS are inconsistent between studies. We therefore believe that it is important to replicate prospectively the abnormalities we identified in our previous study. The goal of the current investigation is to attempt this replication using MRS in twenty volunteers with CFS and twenty healthy controls."

    The findings they want to replicate seem to be what they published in this pilot study:

    Godlewska, B.R., Williams, S., Emir, U.E. et al. Neurochemical abnormalities in chronic fatigue syndrome: a pilot magnetic resonance spectroscopy study at 7 Tesla. Psychopharmacology (2021). https://doi.org/10.1007/s00213-021-05986-6

    Thread here.

    Michiel Tack's take on the pilot study:

     
  14. CRG

    CRG Senior Member (Voting Rights)

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    Off topic but an interesting coincidence: An established company in the business that Lindushealth is seeking to break into is Simbec Orion - set up over 40 years ago as Simbec Research by one Mansel Aylward. Very much on the boo hiss scale for us because of his championing BPS approaches and harsh benefits tests, MA is a local hero for having the chops to set up Simbec in Merthyr Tydfill just at the time when traditional industries were closing down, this added to local admiration already earned by being the first medic on the scene of the Aberfan disaster. All goes to underwriting his eminence in Welsh health circles.

    Simbec Orion https://www.researchuk.co.uk/

    Mansel Aylward http://www.wales.nhs.uk/news/41423
     

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