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

Facebook post

Further details at this link, https://www.actionforme.org.uk/reso...brain-inflammation-phd-study-you-are-funding/

Interesting part of that

 

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.?

 

Is this the FND research?
https://www.s4me.info/threads/cmrc-...-the-board-of-the-cmrc.2809/page-9#post-51054

 

https://www.s4me.info/threads/a-uni...cal-disorders-2018-mark-j-edwards-et-al.3992/

 

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)
Messages:
209
Likes Received:
1,595
↑
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.

 

This is the research I was thinking of, I think:

https://www.s4me.info/threads/mecha...trial-in-progress-april-2018.3689/#post-65477

 

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

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?

 

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.

 

Post-PACE, I'm a bit surprised Action for ME decided to be involved with anything that could even remotely back-fire on them.

 

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.

 

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.

 

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".