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

Andy

Andy

Retired committee member
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.
 
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
 
@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.
 
Andy said:
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.

.
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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.
 
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)
 
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.
 
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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.

My research focuses on the psychopharmacology of depression. I am interested in the biochemical changes that are associated with depression and how drugs work to alleviate the symptoms that depressed patients experience.

Clinical depression is an important public health problem and one of the leading contributors to the global burden of disease. Current treatments, although very helpful, are not effective for an important minority of patients, particularly those referred to mental health services. The rate of discovery of new drug treatments for depression is low partly because our knowledge of the underlying neurobiology is limited.

My group uses a variety of brain imaging methods as well neuropsychological technigues to clarify the brain changes in depression. We also study the effects of psychotropic drugs in these models. We study people who are acutely unwell as well as those at risk of depression because, for example, they have a previous history of the illness or a family history of mood disorder. In the latter respect much of our current work focuses on identifying neurobiological risk factors for young people at risk of depression in the hope of finding simple interventions to help prevent the onset of depression.
Click to expand...
 
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?
 
Peter Trewhitt said:
I don’t know if this is the same study, but


Neurochemistry of CFS and post-COVID-19 fatigue
Named contact Phil Cowan
See https://www.hra.nhs.uk/planning-and...ies/research-summaries/neurochemistry-of-cfs/
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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:

Michiel Tack said:
The authors write:

So this could have been rather interesting. Unfortunately, these authors from Oxford University used the Fukuda criteria (10/22 patients were taking antidepressants) and they focused on a brain region (the pregenual ACC) because of their previous work on depression.

They write:

So I'm a bit concerned that they might have focused their powerful MRI imaging on the wrong area because of their model and views of CFS.

Nonetheless, the lower levels of myo-inositol levels in patients could be interesting as it might be related to the functioning of glial cells.
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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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