Discussion in 'PsychoSocial ME/CFS Research' started by Andy, May 12, 2018.
Paywalled at https://onlinelibrary.wiley.com/doi/full/10.1111/sjop.12451
I thought the ME - ASD connection was that when toddlers get hit with whatever causes ME (eg enterovirus), it manifests as ASD, and that because the toddler is still growing, it also affects their development reflected in somewhat impaired social / emotional connection.
If that theory is so, wouldn't that potentially explain the higher scores on the Autism-Spectrum Quotient by folks with ASD?
Interesting! If asked to predict, I would have said we'd have higher incidence of autistic traits...
Why is that? Even on this forum, there is a very wide range of personalities. And S4ME is a forum that can be expected to attract more than its fair share of people who like facts and figures and analysing things.
Could it not be that those who are more laid back and less single-minded might not be very visible in the community? And indeed, having been written off as lazy, might not even be diagnosed with ME/CFS?
Sure, but I don't consider Asperger's a personality. It is true that we might just attract analytical types here.
Ehhhh we're lazy slobs when it suits the researcher / clinician's bias, aren't we?
But all that aside, I'm surprised because now I've heard a number of researchers' idle chit-chat about it. First study I've seen published that says anything one way or the other. And of course, we're all prone to personal bias -- Asperger's and ME both run in my family.
From parents' forum there does seem to be some correlation , particularly high functioning asbergers. Whether that is higher than general population, or within other chronic illnesses, i don' t know. Adolescent females seem particularly affected and female ASD does seem subtly different.
Rich van K had a theory re low glutathione which did involve similar pathways to Yasko' s theory on autism.
I would have guessed the same and I do have some slight concerns about the reliability of self-assessment in a population wary about being associated with a 'neuropsychiatric' condition
A passing and completely unscientific thought on this.
I tried a while ago filling in a questionnaire based assessment for Aspergers' syndrome on-line (a proper one used by psychologists assessing people).
Doing the same questionnaire based on myself before ME and after many years of ME, I think my answers to some of the questions would be different.
I wonder whether people who develop ME as children who are perhaps slightly towards the Aspergers/high functioning autistic part of the spectrum may end up forced further into it by the loss of learned coping strategies because of the prolonged isolation of being ill.
Edit - but according to this research paper, that's not the case anyway, so I'm probably talking rubbish.
(This is a comment I wrote a while back, somewhere else. I think it's worth repeating.)
There are some major underlying problems here, and in all other studies using the same set of questionnaire data.
I asked a well-informed friend of mine, who used to be a patient at the ME/CFS-centre that collected the data, to describe the main problems in their own words. They replied in Swedish. Below is my rough translation — any mistakes are mine, not theirs!
Here’s what they said:
Many warm thanks to my very helpful friend who, despite being very ill, so generously offered to share all this. We both feel that this is hugely important info that needs to be shared widely, to make people aware of at least some of the underlying problems.
I once came across a comment which may have general application. The comment was to the effect that the only people with the skills to understand and interpret answers to questionnaires have no need of them.
Edit. Questionnaires, that is, not skills.
To give some context, here's another study by the same author:
A comment I wrote a while ago, somewhere else: I think they are trying to say that the effect of CBT could be increased by adding a couple of "psycho-educative sessions of emotional awareness training", since CFS patients have insufficient emotional awareness capacity and big difficulties in describing feelings...
Oh dear. More nonsense to ignore then.
Some more context. Ljungar is -- in my opinion -- one of the most influential BPS proponents in Sweden, although she often describes herself as a having a "biomedical" view/approach.
To give you an idea of what her view of this disease is, here's a telling example. She was the one behind the most recent changes on the Swedish medical information website 1177.se Vårdguiden's page on ME/CFS.
She removed these two crucial sentences:
She deleted all other references to "long-term reduction in functional capacity" as well.
She removed this too:
All these were deleted from the list of symptoms:
Worsening of symptoms after exertion (now it only says malaise after exertion)
A few new symptoms added: orthostatic intolerance, "low-spiritedness" and reduced stress tolerance.
Also gone is the text about pharmacological treatments targeting the immune system, and a paragraph about current research into the immune system, autoimmune and autoinflammatory processes etc...
Prevalence estimate numbers and all references to "post-viral fatigue" were deleted too.
The info on PEM and pacing is sorely inadequate (it was in the previous version too).
I’d say that the overall changes make it sound as if ME/CFS isn’t very serious at all, and there is a lot of focus on fatigue, depression etc. One big step back, sadly
She added some new text that I think is very odd/incorrect, for example this one:
Many of the changes have an underlying subtle (not so subtle!) BPS smell, e.g. the words "limited" and "limitations" have been replaced with words such as "different" and "changes"...
God, I hate people like this.
I guess that’s why they call it a spectrum condition?
Back to questionnaire bias I suspect. Hence the need for an expert?
Sadly still quite misunderstood.
My understanding is the AQ is not, and was never intended to be, diagnostic for ASD. A high score simply suggests further testing may be a good idea, a low score suggests ASD is not likely. It's basically a fairly short screening test to discover if other, much longer and more comprehensive, testing/interviews should be done.
Using it in the way it has apparently been done here, by people who, if they know enough about ASD to decide if it's influenced by M.E., should know the AQs purpose and limitations, is IMO dishonest.
ETA - I am not an expert, merely someone who's been through the process.
What do you suppose is their aim? Maybe they hoped to see a correlation and then do study #2.
I do not suppose, I am almost permanently confused and bewildered by the actions of both others and myself, so I'm not in a position to suppose anything.
Jumping to rash and totally unfounded conclusions, and being completely convinced they are correct - that's more my line these days
maximal tinfoil might suggest that if you can link two disease populations in order to make the less-attackable one more attackable by association, then you do it. if you cannot, then you say they are not connected.
but i'd guess that the study is just meaningless moronic heat thrown off by wanting something to do. despite having an interesting topic by accident!
anecdotally in the community there is enough discussion of various potential connections between m.e. and asd that i'd like to see rigorous studies.
one person wrote a book of interviews [n=20] and observations, which is nominally about smart pw-neuroimmune-disease, but covers a lot of ground. she suggested these research questions:
* What percentage of neuroimmune patients showed autism spectrum or prodigy traits as children or had precocious ability in math, languages, or music? What percentage of patients exhibited hyperlexia?
* What is the overlap or relationship, if any, of adult neuroimmune diseases and autism spectrum disorders?
[note: i was sent the final draft, but was unable for health reasons to read it thoroughly or write the foreword. it mentions /the kafka pandemic/ and its concepts.]
[edit: amazon links do not work for me on this forum. one more try: www.amazon.com/Gifted-Sick-Intersection-Ability-Neuroimmune-ebook/dp/B00MNR7AI8/ref=cm_cr_pr_product_top ]
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