Current Research Project: Understanding the neural mechanisms of fatigue & memory impairments in CFS/ME & Multiple Sclerosis using fMRI

I see CRICBristol are also involved in another ME/CFS study -

• Understanding the neural mechanism of fatigue and memory impairments in MS & CFS/ME, Dr Jade Thai

(See http://www.bristol.ac.uk/cricbristol/research/ ), but I haven't yet found any further details of this study on the University site.

The research that @NelliePledge links to above sounds potentially interesting, but obviously Esther Crawley's involvement, though unsurprising, is a worry given she seems to have problems distinguishing the symptom of chronic fatigue and Chronic Fatigue Syndrome. If Prof Crawley is involved in setting the subject selection criteria it could be that the CFS group includes people with unrelated chronic fatigue conditions and therefor tells us nothing meaningful about ME/CFS. Let's hope these researchers do not let themselves get misled into using the discredited Oxford Criteria.

I could not find a date relating to this research as I wonder how old this page is. It refers to Dr Esther Crawley rather than Prof Crawley, though this could be a typo.

It would be interesting for someone to persuade Prof Crawley to clarify her understanding of the nature of ME as her career is heavily invested in promoting behavioural and psychological treatments, whilst in scientific articles skirting round any discussion of the causes/eitiology. However in the general press she comes out with some very flakey statements bordering on psuedoscience, [added - perhaps also explaining why she allowed herself to get drawn into the whole Lightning Process debacle] :

[added - Looking again, I think the study @NelliePledge links to, and the one I mention at the start of this post could be one and the same. I may have allowed the different titles to mislead me.]

 

What is this research groups fixation with fatigue? It is but one possible symptom of ME.

Why keep focussing on this one symptom? You'd think they believe that fatigue is a window into the soul of this illness--it isn't.

And what is the purpose of now confirming what we've been saying for literally decades, that we often experience significant difficulty with cognitive tasks. How will this study be able to connect fatigue to what they see on an fMRI regarding cognitive tasks?

Not that this group has the expertise but I'd rather -- if they must study fatigue -- they studied the biology of sleep. What allows us to get good refreshing sleep and what prevents that?

Let's hope that EC attaching herself to Dr Thai (I know nothing of Dr Thai) will be a learning experience in science.

Here is a sample of a recent paper just as an introduction: https://www.pnas.org/content/115/17/E4091

 

Of the other researchers involved Dr Simon Collin (see http://www.bristol.ac.uk/social-community-medicine/people/simon-m-collin/index.html ) has co authored a number of CFS articles with Prof Crawley.

 

Dr Thai's publications (see http://www.bristol.ac.uk/clinical-sciences/people/jade-b-thai/publications.html ) seem very eclectic, it may be that she is more interested in the techniques of brain imaging as much as answering specific questions in relation to particular clinical groups.

 

I think it was @Woolie (?) who pointed out that fMRI is used mainly for psychiatric conditions, since it's not really useful for anything else.

 

The logical reasoning must be that MS patients can " recover" with CBT/ GET, given that the researchers state so many similarities between the two conditions.
I think neuroimaging is a very blunt tool. It cannot tell us WHY the brain is not working.

 

I am highly sceptical about the presence of competence. My impression was any brain scan research is pretty complex, and I don't see why Crawley et al. have the needed expertise to produce something meaningful. That won't keep them from declaring their "findings" as facts I fear.

 

I just looked at the page @NelliePledge linked to. Its hard to work out what they're actually planning to do, which makes me very, very suspicious.

As an aside, I thought this was an odd thing to say:

Its like they think that MS is caused by a neurological impairment. But that's kind of arse about face. As i understand it, the primary disease mechanism is inflammation and a corollary is neurological damage. The most logical model is that the fatigue in MS is due to the inflammation, not the neurological problems, because it appears early in the disease (usually before diagnosis), and before there is significant neurological damage.

I understand that the BPS view is that fatigue in MS is "psychological". We're not the only ones who get brushed aside on that front. So hard to knwo what these folks are up to.

Recently, I've talked to a few people with various autoimmune diagnoses, and some say when they ask for help with the thing that really impedes their everyday function - fatigue - doctors tend to just brush it off. The only disease features that seem to capture medical attention are those that are objectively observable (e..g, on a scan) and those that might shorten the person's life.

It seems that doctors are still really only interested in quantity, not quality of life.

 

looks like it was a Phd study(?)
https://www.findaphd.com/phds/proje...athy-cfs-me-and-multiple-sclerosis-ms/?p60157

eta:
this link shows it was in 2014 or thereabouts
https://www.findaphd.com/phds/proje...athy-cfs-me-and-multiple-sclerosis-ms/?p50757

 

PS I just saw the study description that @Sly Saint posted. They're definitely hoping to see differences between the CFS/ME and MS groups. I think they're going for the view that fatigue in MS is "real" (ie. has a neurological basis), whereas ours is psychological. Therefore, they will look different on an fMRI when people perform cognitive demanding tasks.

@adambeyoncelowe is right that fMRI is mainly used to make psychological-level inferences. (not biological-level ones). But "psychological" extends to lots of things other than thoughts, feelings and behaviours - it also encompasses things like memory, perception, word and face recognition, spatial processing, visual and auditory attention, working memory, etc. The best case scenario is that they find MECFS patients show abnormal patterns of activation during demanding tasks (probably less activation in the region that's most critical for the task, and more activation in areas not critical - because that's the usual pattern you see when people are bad at something). That would confirm that we're having genuine cognitive difficulties.

The worst case scenario is that they try and make backwards inferences that the areas we engage demonstrate that we are more fearful, emotional, hypervigilant, etc. Although its not appropriate to make those kinds of inferences from fMRI (you can't work backward from a region of activation to what function is being performed in that region), people do it a lot in health psychology.

 

Will make things interesting if the Guideline review goes in our favour and improves the criteria then.

 

seems to be in two parts(?)(ie cfs ms)
http://www.bristol.ac.uk/research/impact/chronic-fatigue-syndrome/
http://www.bristol.ac.uk/cricbristol/volunteer/003/

not Bristol but these publications may also be of interest:
https://www.ncbi.nlm.nih.gov/pubmed/24229326
https://www.mdpi.com/2075-4418/8/3/42/htm

eta: and this one https://www.mdpi.com/2075-4418/8/3/42/htm

 

NICE can be read ambiguously re PEM. It' s only recently that PEM has been part of paediatric protocols i think.