AfME announce funding for a new PhD student working with Dr Neil Harrison on the impact of inflammation on the brain, Jun 2018

Andy

Andy

Retired committee member
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Action for M.E. is delighted to announce its latest PhD studentship in biomedical M.E. research.

Following our rigorous Research Funding Assessment Process, our Board of Trustees has awarded funding to Dr Neil Harrison to recruit a PhD student for three years as part of his project to investigate the effects of inflammation on brain function in M.E./CFS, with the aim of determining the neurobiological mechanisms that underpin fatigue, post-exertional malaise and pain experienced by people with M.E.

Dr Harrison, Reader in Neuropsychiatry and Neuroimaging at Brighton and Sussex Medical School, says, “This research is important as it will bring state-of-the-art brain imaging to the study of M.E./CFS, a standard this is being increasingly used in other illnesses affecting the brain. This will allow us to look in much greater detail at how M.E./CFS affects brain function and better understand how mild inflammation influences this.”

Subject to the contract being agreed, and a student recruited, this PhD will start later this month. You can find out more on our project page at https://www.actionforme.org.uk/…/what-are-the-details-of-t…/

This PhD studentship has been awarded following our October 2017 funding call for high-quality, innovative pilots that address the biology of M.E., for which a number of applications were submitted. Last month, Action for M.E. and the Scottish Government’s Chief Scientist’s Office announced that our jointly funded PhD studentship in biomedical M.E. research would be awarded to Prof Chris Ponting, University of Edinburgh.
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Further details at this link, https://www.actionforme.org.uk/reso...brain-inflammation-phd-study-you-are-funding/

Interesting part of that
In addition to the PhD study he is leading, funded by Action for M.E., Dr Harrison is working on two additional projects funded by Arthritis Research UK and the Medical Research Council (MRC).

The MRC-funded study forms part of a larger grant led by Prof Mark John James Edwards, at St George's, University of London. Some concerns have been raised about this study, which was included as a work package in a much larger grant, A unified mechanism for functional neurological symptoms, including that:

  • it is trying to prove that M.E./CFS is a functional neurological disorder
  • it will be used as evidence to move people with M.E. to treatment under the banner of Medically Unexplained Symptoms, which is psychiatric in focus
  • that study participants will be studying ALL patients with functional neurological disorder, and not people with clearly defined M.E.
  • the “treatment” referred to in the study abstract will be behavioural.
We asked Dr Harrison to address this. He says:

“Thank you for asking me about this. To clarify, the grant with Prof Edwards includes several independent work packages including some on non-epileptic attack disorder and functional movement disorder. These are led by Prof Edwards at St Georges and I have no involvement in either of these studies. This M.E./CFS study is completely separate study and is led by me at Brighton and Sussex Medical School.

“I do not conceptualise M.E./CFS as a functional neurological disorder and this study is certainly not trying to prove that M.E./CFS is a functional neurological disorder. My view is that M.E. is a complex, systemic condition, which requires appropriate biomedical treatment; our current study aims to provide important new evidence in support of this.

[Much more at link]
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I note that he says: "It’s important to note the typhoid vaccine induces only a very mild inflammatory response and has never been associated with problems in people with M.E./CFS."

I'd like to know more about that, as I am a bit concerned about the vaccine.

When has it been used before, in what patients, for how long have they been followed, etc.?
 
This is the bit to which I was referring- related to Neural consequences of post-exertion malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.” by Edwards/ Harrison - so
so probably different research, but some aspects of outlook remain concerning.


AwolSenior Member (Voting Rights)
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Last night after Jonathan Edwards kindly replying, I felt initially a little reassured, but standing back and thinking about it more I still think there is much to go wrong as some of these people - even if Harrison is more nuanced and not trying to shoehorn a preconceived theory into his studies - are trying to relabel ME as a functional neurological disorder and current treatment for fnd is basically CBT and rehab (so a form of GET). I still will keep a close eye on this line of research.
I feel the same. I first heard of Neil Harrison as a speaker at the IiME Research Conference in 2015, enjoyed his presentation on the conference DVD, was pleased to know of his interest and involvement in ME research and have no doubts about his sincerity and good intentions.

I also don't object to researchers trying to prove or disprove their functional neurological disorders hypothesis in ME or CFS, provided that selection criteria are clear and methodology above board etc., but the phrasing in the overview of the study that you linked to concerns me.

"We have previously developed a theory that we believe provides a reasonable mechanism for how symptoms are produced. We have already gathered evidence that supports this theory in patients who have functional symptoms affecting movement (e.g. weakness, tremor) and sensation (e.g. numbness). We now want to move forward and test if this theory can also account for symptoms experienced by people with chronic fatigue syndrome and non-epileptic attack disorder." http://gtr.rcuk.ac.uk/projects?ref=MR/M02363X/1

I also noticed that at end of the second of these two interesting interviews kindly given by Neil Harrison in 2016, he mentions the work of a researcher in Australia, Andrew Lloyd, whose research activities look impressive to me, but then ends with this:

"He has recently completed the Cancer Australia-funded Treatment of Post-cancer fatigue Study (TOPS) trial, which demonstrated the effectiveness of cognitive-behavioural therapy and graded exercise therapy in the management of post-cancer fatigue. In the UNSW Fatigue Clinic he leads a multi-disciplinary research team conducting both pathophysiological research to better understand disease menchanims in medicallyt-unexplained fatigue states, and also clinical research to improve existing cognitive-behavioural therapoy (CBT) and graded exericse therapy (GET) treatment interventions." (ETA the correct link: https://research.unsw.edu.au/people/professor-andrew-lloyd)

As I said, I find Neil Harrison personable and interesting to listen to, and do not doubt his good intentions, I just think it makes sense to be alert to the possible disadvantageous outcomes of well-meaning biomedical research activities until we have better tools for differential diagnosis of ME.
 
So it could be good, but I too have some reservations at the moment. From what he's said, it sounds to me like he was maybe only involved in the FND paper in a minimal way (perhaps just to get more credits to his name?), but it's not exactly inspiring. I'm glad he's spoken out and said he doesn't think ME is FND now. I'm curious to see how this turns out. The proof, as always, will be in the pudding.
 
Lots to look good about the 2 PhD projects AFME are part funding. Regarding FND my concern is regarding the mark Edwards research ad the idea is for testing before and after treatment, for FND the treatment is essentially behavioural and would involve I assume CBT, rehabilitation, physio get etc, All areas of concern as over used in the CFS field. I read an article from mark Edwards on FND treatment where he doesnt seem of the opinion that drug treatment is appropriate for it, echoing to me Crawley and the behaviouralists. Research on the neuroinflammatory/brain involvement is fine but I do have concerns on FND beliefs , treatment and the MRC
Andy said:
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Further details at this link, https://www.actionforme.org.uk/reso...brain-inflammation-phd-study-you-are-funding/

Interesting part of that
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But the mark Edwards abstract or whatever is looking for a unifying theory of FND and has CFS as part of it. Therefore how can Edwards at least not be conceptualising that way
Secondly can someone clarify this CFS part of this larger package in terms of funding as there is an impressive £600 k figure often quoted for this research. Am I right that the CFS part is not £600 k?
 
MeSci said:
I note that he says: "It’s important to note the typhoid vaccine induces only a very mild inflammatory response and has never been associated with problems in people with M.E./CFS."
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I'm not a normal MECFS patient (I think technically, I'm not one at all, since I now have an alternative diagnosis). But this vaccination killed me. Two weeks of hell, followed by three more weeks of misery.

And if anyone thinks I might just have been imagining it, then my CRP levels were partaking in the same fantasy - they were through the roof.

That might just be me. But if you've ever had any sort of crash following a flu jab or such like, and you're barely holding onto a job/life as it is, I would steer clear of this one.
 
Cinders66 said:
But the mark Edwards abstract or whatever is looking for a unifying theory of FND and has CFS as part of it. Therefore how can Edwards at least not be conceptualising that way
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Post-PACE, I'm a bit surprised Action for ME decided to be involved with anything that could even remotely back-fire on them.
 
Esther12 said:
Post-PACE, I'm a bit surprised Action for ME decided to be involved with anything that could even remotely back-fire on them.
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post PACE it seems like they still have the fence post stuck up their backside even if they are leaning towards the biomedical side slightly more than before
 
I've been told that AfME's research strategy is "try everything and see what sticks". Because at this point, no one knows what will work. AfME isn't opposed to any specific type of research.

If what I was told is true, it could explain some of AfME's research efforts.

I also was told AfME is looking to fund more PhD's.
 
Webdog said:
I've been told that AfME's research strategy is "try everything and see what sticks". Because at this point, no one knows what will work. AfME isn't opposed to any specific type of research.

If what I was told is true, it could explain some of AfME's research efforts.

I also was told AfME is looking to fund more PhD's.
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Aren't they funding one of Crawley's PhD students, who is currently promoting prejudice about patients rejecting evidence in her papers?

I'm worried that Action for ME can view a failure to learn from their mistakes as some virtuous form of open mindedness.
 
Esther12 said:
I'm worried that Action for ME can view a failure to learn from their mistakes as some virtuous form of open mindedness.
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Unfortunately, that is my impression.

And this is part of the reason AfME is so sensitive to criticism for past efforts. They meant well, even if it didn't pan out.

It's not that AfME is against biomedical research. They just promote all types of "research".
 
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