Patients with chronic fatigue syndrome do not score higher on the autism‐spectrum quotient than healthy controls, 2018, Bileviciute‐Ljungar et al

Andy

Andy

Retired committee member
Abstract
Clinically, there is an overlap of several symptoms of chronic fatigue syndrome (CFS) and autism spectrum disorder (ASD), including fatigue; brain “fog”; cognitive impairments; increased sensitivity to sound, light, and odour; increased pain and tenderness; and impaired emotional contact. Adults with CFS (n = 59) or ASD (n = 50) and healthy controls (HC; n = 53) were assessed with the Autism‐Spectrum Quotient (AQ) in a cross‐sectional study. Non‐parametric analysis was used to compare AQ scores among the groups. Univariate analysis of variance (ANCOVA) was used to identify if age, sex, or diagnostic group influenced the differences in scores.

Patients with ASD scored significantly higher on the AQ than the CFS group and the HC group. No differences in AQ scores were found between the CFS and HC groups. AQ results were influenced by the diagnostic group but not by age or sex, according to ANCOVA. Despite clinical observations of symptom overlap between ASD and CFS, adult patients with CFS report few autistic traits in the self‐report instrument, the AQ. The choice of instrument to assess autistic traits may influence the results.
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Paywalled at https://onlinelibrary.wiley.com/doi/full/10.1111/sjop.12451
 
Interesting.

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?
 
JaimeS said:
If asked to predict, I would have said we'd have higher incidence of autistic traits...
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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?
 
Hutan said:
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.
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Sure, but I don't consider Asperger's a personality. :) It is true that we might just attract analytical types here.

Hutan said:
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?
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Ehhhh we're lazy slobs when it suits the researcher / clinician's bias, aren't we? :wtf:

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.
 
JaimeS said:
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? :wtf:

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.
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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.
 
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:
The primary care health centres used to be able to send referrals to Danderyds Sjukhus (DS, “Danderyd’s Hospital”), where Indre Bileviciute-Ljungar used to work. At the time, it was Stockholm’s only ME specialist centre. It had a bad reputation, and a report on, and written by, the centre — which had been run in the form of a project — led to its closing in 2015.

Thorough medical investigations had to be done before sending a referral there, and at the centre the doctor could then make a diagnosis. Before coming to the centre, one received a large amount of questionnaires in the mail. The questionnaires appeared to be a part of the medical investigation, in order to try to exclude depression, to check if there are pain issues etc. There are lots of ‘yes or no’ questions, boxes to tick and scales to draw lines in. There are no fields where you can add your own comments or clarifying explanations.

Despite this massive amount of questions, there’s nothing that allows you to put anything about PEM in there. No questions at all to find out if PEM is present or not. For example, there are no follow-up questions, that easily could have indicated which kind of activities are causing it etc.

When you registered at the centre, you were asked if you wanted to take part in this project, that would be used for research purposes. You signed an agreement then and there, and it said that you can withdraw at any time. However, you didn’t get a copy of the agreement to keep.

The news about the centre’s closing was very welcome, and we were hoping that the doctor in question would stop using these questionnaires for research, since the data really doesn’t give a fair representation of the ME-patients at all. However, the doctor has continued using these questionnaires even after the project ended [and, even though she relocated to another county, and is now working at a different ME/CFS centre]. She still has some connections at [the medical university] Karolinska Institutet in Stockholm, and is therefore still able to access the questionnaire data, although Stockholm county council owns it. She is doing several studies based only on these questionnaires.

For example, one of the questions was: can you walk x meters? If your answer is yes, you are saying that you can do it (without problems). If your answer is no, you are saying that you are unable to walk. For this question to give a fair picture, it needs to be followed up by another question; one more question would have to be added in. Does this affect your symptoms, either immediately or later?, in order to show PEM, which is the main criterion, and that I feel has to be included if you’re studying this diagnosis.

Another question was if you care about your looks/appearance as much as you used to. Yes or no.
Has anyone close to you passed away? Has anyone commited suicide?
Rate your pain on this scale by drawing a line where you are.

When you meet the doctor (I saw her twice), during the registration process you go through the questionnaires very quickly. I very clearly explained about the problems with the questions, and also explained in detail that in order to give a fair picture of how I view my own current health situation, the answers have to be expanded with explanations. She allowed me to tell her, but she took no notes.

The project was run for a number of years. Unfortunately it looks like she will continue doing studies based on these questionnaires.

It’s possible to contact the archive to ask them to remove your questionnaire data. However, it is complicated and not at all clear whom to contact, or how. Some of us started looking into it a while ago, and managed to find out whom to contact and how. Many of the patients who took part in the project had no idea how these questionnaires were being used, they were unaware of their right to withdraw, didn’t even know that they were still being used by this researcher who is now working in another county, within a different county council.

The questionnaires are available to researchers in Stockholm, they can apply to use them. In other words, people who have never ever met a ME patient can study ME based on these questionnaires, even though they don’t even include our main issues.
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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.
 
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To give some context, here's another study by the same author:
Differences in alexithymia and emotional awareness in exhaustion syndrome and chronic fatigue syndrome

Maroti D 1, Molander P 2,3, Bileviciute-Ljungar I 4,5.

Author information
1 Department of Clinical Sciences, Karolinska Institutet and Department of Rehabilitation Medicine, Danderyd Hospital, Stockholm, Sweden.
2 Department of Medical and Health Sciences, Linköping University and Region Östergotland, Linköping, Sweden.
3 Department of Behavioral Sciences and Learning, Linköping University, Linköping, Sweden.
4 Department of Clinical Sciences, Karolinska Institutet and Department of Rehabilitation Medicine, Danderyd Hospital, Stockholm, Sweden.
5 Department of Medical and Health Sciences, Linköping University and Region Östergotland, Linköping,

Scand J Psychol. 2016 Sep 30. doi: 10.1111/sjop.12332. [Epub ahead of print]
DOI: 10.1111/sjop.12332

Abstract
Symptoms of Exhaustion Syndrome (ES) and Chronic Fatigue Syndrome (CFS) are overlapping and create difficulties of differential diagnosis. Empirical studies comparing ES and CFS are scarce.

This study aims to investigate if there are any emotional differences between ES and CFS.

This cross-sectional study compared self-reported alexithymia and observer-rated emotional awareness in patients with ES (n = 31), CFS (n = 38) and healthy controls (HC) (n = 30).

Self-reported alexithymia was measured with the Toronto Alexithymia Scale-20 (TAS-20) and emotional awareness with an observer-rated performance test, the Level of Emotional Awareness Scale (LEAS). Additionally, depression and anxiety were scored by the Hospital Anxiety and Depression Scale (HADS).

Results show that patients with ES expressed higher self-reported alexithymia in the TAS-20 compared to HC, but had similar emotional awareness capacity in the observer-rated performance test, the LEAS.

Patients with CFS expressed more difficulties in identifying emotions compared to HCs, and performed significantly worse in the LEAS-total and spent more time completing the LEAS as compared to HC.

Correlation and multiple regressions analyses revealed that depression and anxiety positively correlated with and explained part of the variances in alexithymia scores, while age and group explained the major part of the variance in LEAS.

Findings of this study indicate that emotional status is different in patients with ES and CFS with respect to both self-reported alexithymia and observer-rated emotional awareness.

Emotional parameters should be approached both in clinical investigation and psychotherapy for patients with ES and CFS.

Keywords: alexithymia; chronic fatigue syndrome; depression; emotional awareness; exhaustion syndrome

https://www.ncbi.nlm.nih.gov/pubmed/27686801
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Wikipedia said:
Alexithymia /ˌeɪlɛksəˈθaɪmiə/ is a personality construct characterized by the sub-clinical inability to identify and describe emotions in the self.
https://en.wikipedia.org/wiki/Alexithymia
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Alexithymia study said:
There are striking symptom similarities in [Exhaustion Syndrome, ES] and CFS, at least when the Fukuda criteria for CFS are applied [...] ES is, however, considered a stressrelated psychiatric disorder caused by long-term psychological stress that is often, but not exclusively, work related [...] ES is related to high work demands in conjunction with low levels of influence or control [...] in both conditions Cognitive Behavioral Therapy (CBT) is the usual psychotherapeutic treatment approach.
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Alexithymia study said:
It has been argued that alexithymic individuals are vulnerable to incorrectly attributing benign bodily sensations to physical disease (Kooiman, Bolk, Rooijmans & Trijsburg, 2004). Having alexithymic tendencies could make it difficult to differentiate feelings from bodily states such as tension, distress and fatigue (Waller & Scheidt, 2006).

Alexithymia has been conceptualized as a stable personality trait (Taylor et al., 1997) or as a defensive state reaction to a stressful situation such as, for example, a traumatic event, or a medical, or psychiatric illness (de Vente, Kamphuis & Emmelkamp, 2006).
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Alexithymia study said:
Clinical implications
Alexithymia has been associated with poor outcomes in psychodynamic therapy and supportive therapy [...] Moreover, difficulties in emotional awareness capacity have been shown to be a strong moderator of treatment effectiveness in both CBT and psychodynamic psychotherapy (Beutel, Scheurich, Knebel et al., 2013).

Given that existing CBT treatments for CFS have a moderate effect (White, Goldsmith, Johnson et al., 2011) and that CFS patients both report and have a hampered emotional awareness capacity, an increased focus on emotional awareness could enhance treatment outcome (Chalder & Hill, 2012; Moss- Morris, 2005).

Simply adding two 30-minute psycho-educative sessions of emotional awareness training to standard medical treatment led to a more decreased pain intensity for patients with Irritable Bowel Syndrome
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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...
 
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:
1177.se said:
"Långvariga funktionsnedsättningar kan leda till omfattande och stadigvarande nedsättning av arbetsförmågan, eller svårigheter att fullfölja skolgång liksom att klara dagliga verksamheter och personlig omvårdnad."

Long-term reduction in functional capacity may lead to substantial and permanent reduction of capacity for work, or difficulties fulfilling school attendance as well as managing daily activities and personal care.
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1177.se said:
“Det finns ännu inget botemedel mot ME/CFS och sjukdomen räknas som livslång.”

As yet there is no cure for ME/CFS and the illness is considered lifelong.
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She deleted all other references to "long-term reduction in functional capacity" as well.

She removed this too:
1177.se said:
“Personer med ME/CFS (myalgisk encefalomyelit/chronic fatigue syndrome) beskriver en extrem fysisk och mental utmattning ofta i kombination med sjukdomskänsla. Det svenska begreppet kroniskt trötthetsyndrom är egentligen en missvisande term i sammanhanget och ska inte blandas ihop med sömnighet.”

People with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) describe an extreme physical and mental exhaustion, often in combination with malaise. The Swedish term kroniskt trötthetssyndrom [literally ”chronic fatigue syndrome”] is actually a misleading phrase in this context and should not be confused with sleepiness.
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All these were deleted from the list of symptoms:
  • Exhaustion
  • Flu-like feeling
  • Fever
  • Muscle pains
  • Neurological problems
  • Frequent infections
  • Memory problems
  • Worsening of symptoms after exertion (now it only says malaise after exertion)
  • Unrefreshing sleep
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:
1177.se said:
"Hur mycket symtom du får beror på om du har fått diagnos, behandling och anpassning i ett tidigt eller senare skede av sjukdomen."

How much symptoms you get depends on whether you have received diagnosis, treatment and adjustments in an early or later stage of the illness.
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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"...

:grumpy:
 
mango said:
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 all references to "long-term reduction in functional capacity" as well as these two crucial sentences:


She removed this too:

All these were deleted from the list of symptoms:
  • Exhaustion
  • Flu-like feeling
  • Fever
  • Muscle pains
  • Neurological problems
  • Frequent infections
  • Memory problems
  • Worsening of symptoms after exertion (now it only says malaise after exertion)
  • Unrefreshing sleep
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"...

:grumpy:
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God, I hate people like this.
 
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.
 
JaimeS said:
What do you suppose is their aim? Maybe they hoped to see a correlation and then do study #2.
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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.

===

p.s.

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?
"

Amazon product ASIN B00MNR7AI8
[LINK=amazon]B00MNR7AI8[/MEDIA] .

https://www.goodreads.com/book/show/23377613-gifted-and-sick

[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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