Scientist joins Sussex ME Society's advisory team

Source: Brighton & Hove Independent

Date: August 7, 2018

Author: Amy Horsfield

URL:
https://www.brightonandhoveindepend...s-sussex-me-society-s-advisory-team-1-8593430

Scientist joins Sussex ME Society's advisory team
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A scientist from the Brighton and Sussex University Hospital NHS Trust has joined the Sussex ME Society's Medical advisory team. Dr Jessica Eccles, a Medical Research Council Training Fellow, is currently leading a research study at Sussex University exploring the brain-body interactions of people living with Myalgic encephalopathy(ME) and Fibromyalgia.

The Sussex ME Society cares for people with ME and Chronic fatigue syndrome(CFS) that affects over 4,000 adults and children in Sussex. The neurological disorder can cause physical and mental fatigue, confusion, difficulties with memory and concentration, muscle pain, mood disturbances and vision problems.

Colin Barton, chairman of the charity, said: 'We are delighted to welcome Dr Eccles to our team of top doctors and scientists that advise us and are pleased to be assisting with the important studies being carried out at the university into this potentially life ruining illness.'

Dr Eccles is working alongside Dr Neil Harrison on the Sussex ME Society's advisory panel researching post-exertional malaise that is a key indicator for ME.

To find out more about the Sussex ME Society, visit: http://www.measussex.org.uk

 

It’s quite unusual for a local support group to have several, top medical advisors? Why are they required?

 

https://www.bsms.ac.uk/about/contact-us/staff/dr-jessica-eccles.aspx

As an MRC Clinical Research Training Fellow she recently completed her PhD in the relationship between joint hypermobility, autonomic dysfunction and psychiatric symptoms

 

Having read her staff info from John Mac's link, she sounds like someone I would never, ever want to see as a patient.

 

Alongside such luminaries as Esther Crawley and Alistair Miller.

 

Is that "top" used in the sense that they have all been in, or seek access to, the big tent.

 

Dr Eccles' research focuses on brain body–interactions. As an Academic Clinical Fellow she studied vulnerability to interferon induced depression, auto-antibodies in Alzheimer’s Disease, and neural correlates of abnormal skin sensations. She published the first paper to show structural brain differences in key emotional brain regions in joint hypermobility and her MRC funded doctoral work has continued to establish the relationship between joint hypermobility, autonomic dysfunction and psychiatric symptoms.

I am not too impressed by the study. They took 72 healthy people without anxiety and divided them up into 'hypermobile' and control. They found no difference in anxiety (not surprisingly) despite this supposedly being a paper about the link between hypermobility and psychiatric symptoms.

Conveniently, 36 patients fell into the hypermobile group. But this was defined as Beighton score of 1 or more. Now, I have always had a Beighton score of 2 and I don't think anyone would suggest that less than a score of 4 would count as generalised hypermobility. So this is not a study of hypermobility syndrome.

The main difference between groups seemed to be that the mobile ones were more sensitive to interceptive signals - signals about body positions - and they had bigger amygdalas. Is this a surprise?

Well, a significant factor in how mobile you are is how much you do stretching physical activities. Going to the gym will increase mobility at least of spine and probably other joints a bit. And it seems that the study is really comparing rather stiff people (brighten zero) with people who are bit supple. Would one expect a difference in sense of position. I think one might well do. The stiff people were likely to be the couch potatoes.

And what does one make of a big amygdala. clearly not that it is associated with psychiatric symptoms because the group had none. Maybe the amygdala gets bigger if you go to the gym or otherwise get to know your body a bit and keep supple.

 

I feel like it's a bit embarrassing for them to try to use a local group like that, although there are still examples where they seem to do so. Surely it stands out as odd to people though?

 

On their website measussex.org under links there is a link to 'Treatment for Children with ME/CFS' which takes you directly to the University of Bristol FITNET-NHS study page.

Why is their website included on the ME Association site?

 

For the second edition running the MEA's members magazine includes some information from them as well.

Not sure it does much to raise my fun levels though..

 

That mentions the ME Society. I have been saying on another thread that I have never heard of such a thing. Does anyone know what it is, or was? Perhaps that is the organisation whose advice Goldberg objected to for advocating total rest. But it hardly fits the description of a" powerful self-help group". It would be typical if all "self-help groups" were tarred with this particular brush, by a significant member of the psychiatric establishment.

So could the ME Society be a shortened form of the Sussex & Kent ME Society? That might make sense.

 

'orgasiation'......... not sure what levels this is referring to

 

That was my first thought, too, when I read "brain-body-interaction" - that's a nice new word for mind-body-connection or psychosomatic. (It feels manipulative.) That's how I personally understood it.

 

Would be interesting to know why the ME Association was promoting Colin Barton's group without mentioning any of the problems with it.

 

The ME Association magazine wouldn’t tend to criticize other groups, like a lot of groups. I was disappointed to see the promotion of the group. I suspect Colin Barton submitted it but they didn’t have to include it. New-ish editor could be a bit naive.

 

My bad, the scan below is from two editions ago, so Barton's group has appeared in two of the last three magazines.