CENSSAS: Exploring Associations Between CENtral Sensitivity Syndromes and the Autism Spectrum

Andy

Andy

Retired committee member
Not a recommendation.
The CENSSAS study is a research project investigating possible associations between Central Sensitivity Syndromes (CSS) and Autism Spectrum Conditions (ASC).http://www.censsas.co.uk/#

‘Central Sensitivity Syndrome’ is a relatively new umbrella term used to describe a group of related illnesses including Fibromyalgia (FMS), Chronic Fatigue Syndrome (CFS), Temporomandibular Joint Disorder (TMJ), Irritable Bowel Syndrome (IBS) and several other conditions. Informal observations have suggested that people with an Autism Spectrum Condition (ASC) might be more vulnerable to developing these conditions.

The aim of the CENSSAS study is to see whether there is an association and, if so, what common complaints or overlapping symptoms there might be. To do this, we need to explore the symptoms of people with ASC and with CSS, but also look at the extent to which symptoms of CSS, autistic traits or other related symptoms occur in the broader population. Therefore, we are seeking participation from anyone aged 18+.

The survey should take around 30-45 minutes to complete, and you should be able to complete it in more than one sitting if you wish, provided you use the same computer/browser.

After the initial survey, we will speak to people with autism or a Central Sensitivity Syndrome about their experiences of illness, diagnosis and daily living, and look at areas where experiences are the same for everyone, and where they differ. You will be able to provide your email address at the end of the survey if you are interested in taking part in this research.
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http://www.censsas.co.uk/


This FM charity has 13k followers, which explains why this central sensitisation rubbish is spreading if they are willing to share it.
 
This makes no sense. The description of what they are trying to find out - ie the prevalence of overlap between the two categories, is an epidemiological question, so they should do a population based epidemiology study to discover population prevalence of each, and whether the overlap is higher than expected.

Instead they ask the very people who might have diagnoses from both categories to fill in the questionnaires and tell them it's about people who fit both categories. So of course it will look like there's a high prevalence of overlap.
 
'Related' how?

The most direct relationship I see is that they don't understand them, so the relationship is 'things we don't have a clue about'.

...and now they are trying to add ASC (WTF is ASC, call it by the same name as everyone else does FFS) to this collection of things they don't understand, as if that will make them easier to study, to help people.

All it would do is make them more difficult to study IMO, whilst having the unfortunate side effects of both growing their 'field' and discouraging serious people from entering it.
 
Trish said:
This makes no sense. The description of what they are trying to find out - ie the prevalence of overlap between the two categories, is an epidemiological question, so they should do a population based epidemiology study to discover population prevalence of each, and whether the overlap is higher than expected.

Instead they ask the very people who might have diagnoses from both categories to fill in the questionnaires and tell them it's about people who fit both categories. So of course it will look like there's a high prevalence of overlap.
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That,s the desired outcome.
Gets research funded
By promoting the bastardisation of CSS , it morphs into something else . This is a veneer of applied " biomedical". Watch it play out.

There is a ship being steered

Eta last sentence
 
Andy said:
Not a recommendation.

http://www.censsas.co.uk/


This FM charity has 13k followers, which explains why this central sensitisation rubbish is spreading if they are willing to share it.
Click to expand...

It’s a terrible website not easy to use and the content doesn’t look too good couldn’t see anything about the need for research into the illness. Makes ME charities look very effective in comparison.
 
Funded through Economic and social research council.

This is a link to their research ethics:

https://esrc.ukri.org/funding/guidance-for-applicants/research-ethics/

I have no idea if this is useful. I don't have the wherewithal to look. And as it seems that ethics actually steer clear of useful guidance with regards to whether the research in question will truly be able to deliver any useful data I expect it's all above board. I suppose quality of research is not considered an issue of ethics.

I'm so disheartened by seeing endless (admittedly often small) amounts of money dripping into an ocean of nonsense research. I wish someone on the inside of all this would get smart and get a conscience to speak up.
It's also people's careers wasted where real contributions could have been made.
 
This is bad both ways because they will just say that people with autism are obviously mentally ill so "CSS" symptoms aren't real. It also give them licence to ignore any of those biological issues that people with autism do get and then they'll be able to also downgrade the CSS thing to "anyone who suffers those symptoms is delusional". Bad for the biological health of autistic people and bad for everyone else. Also potentially they'll be able to get hold of the children with any so-called CSS symptoms and hide them under the banner of autistic spectrum disorder.
 
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This popped up in my google scholar alerts too, due to the mention of ME/CFS, which from their definition I’m not convinced the author understands particularly well. I don’t think they're trying to dismiss it, just don’t understand it.

There’s acknowledgment of people not being believed etc, but I couldn’t see anything about diagnostic criteria used. They’re bundling a whole range of conditions together.

Probably won’t be spending any more time trying to understand this one.

Whilst many chronic pain disorders have been linked to central sensitization, a group of health conditions previously considered to be psychiatric or unexplained have been more recently theorised as having a primary component of central sensitization, and therefore referred to as ‘central sensitivity syndromes’, or CSS (Mayer et al., 2012; Yunus, 2007, 2008). Conditions commonly included under this umbrella include fibromyalgia (FMS), myalgic encephalomyelitis (ME/CFS), irritable bowel syndrome (IBS), temporomandibular joint disorder (TMJD), migraine and others. They are sometimes instead referred to as Chronic Overlapping Pain Conditions or COPCs (Gatchel & Neblett, 2018; Maixner et al., 2016).
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ME/CFS is associated predominantly with persistent fatigue and tiredness even after sleep, as well as post exertional malaise. Central sensitization was first proposed as a possible explanation in 2007 (Meeus & Nijs, 2007), and further research has shown that central sensitization can explain fatigue as well as chronic widespread pain (Druce & McBeth, 2019; Nijs et al., 2012; Staud et al., 2015). Current theory suggests that the underlying mechanisms of ME/CFS are complex but do include central nervous system dysregulation (Rivera et al., 2019). A recent systematic review and meta-analysis estimated the global prevalence of ME/CFS to be 0.89% (Lim et al., 2020).
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I think that autistic people may well be sensitive to stimuli and I can see an overlap in mechanisms with ME/CFS as conceivable but that needs to be explored without prefaced concepts like CSS that don't actually mean anything in terms of testable mechanism.
 
Something that is frequently talked about by autistic people is 'sensory seeking', ie being undersensitive to stimuli (compared to other people), hence some physical repetitive behaviours or 'stimming' (repetitive movements or fiddling) to provide a consistency of sensory feedback. I've no idea how this might interact with any processes in ME/CFS but it is very much opposite to any theory of 'central sensitisation'. I hope the author will be considering this.
 
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