Neurodivergence as a risk factor for Post-Covid-19 Syndrome, 2023, Raw et al

The lead author comes from Newcastle-upon-tyne - people from the Me/CFS clinic there made an horrendous submission to the NICE guideline process.

First paragraph of the abstract:

I don't know about central sensitisation in neurodivergent people ('neurodivergence' surely covers a lot of different things?), but it's far from proven that ME/CFS is explained by a 'heightened response to internal physiological stimuli'.

Later in the text it is said that the mechanisms underlying ME/CFS are not fully understood, and that Central Sensitisation is only a 'key theory'. But then later in the paper, the certainty is back:

It was an online survey, so, for sure, self-selection is likely to have been an issue.

So, there was no significant association between being (self-declared) neurodivergent and having persisting systems.

 

Mentalising (the ability to think about thinking?) - no effect on risk of persisting symptoms
Social anxiety - no effect on risk of persisting symptoms
Sensory reactivity - significant risk

DS14 is a measure of negativity and social inhibition - no overall effect on risk of persisting symptoms
Negative affectivity was only higher in people in the 4-12 week period; surprisingly, it wasn't significant in people still with symptoms after 12 weeks.

 

I didn't see a clear description of how they asked about persisting symptoms. I didn't see it noted that respondents were required to only note symptoms that were significantly worse after the infection than before. And then there's also the self-selection issue - people are way more likely to answer a survey about persisting symptoms if they have them, than if they don't and would rather not think about the risk of getting them.

While it's great that the authors were able to consider that an association doesn't tell us about the direction of causality, the prejudice embedded in that discussion is pretty horrible, and a bit illogical.
In their view, people with persisting symptoms from 4 to 12 weeks, who were statistically more likely to be showing negative affect, might be experiencing those symptoms because they didn't "take the actions necessary to accelerate their recovery" (e.g. returning to regular activities). And yet, the people still stuck with persisting symptoms after 12 weeks didn't tend to show negative affect...

It looks as though this 'sensory reactivity' is the only real finding related to personality or behaviour in this paper. This is a sub scale of the RAADS-14 instrument. The whole instrument has only 14 questions. The questions possibly relating to 'sensory reactivity' are:
2. Some ordinary textures that do not bother others feel very offensive when they touch my skin.
7. When I feel overwhelmed by my senses, I have to isolate myself to shut them down.
10. Sometimes I have to cover my ears to block out painful noises (like vacuum cleaners or people talking too much or too loudly)

The possible responses are:

• true now and when young
• true only now
• true when I was young
• never true

The paper does not tell us if the respondents on this survey were given the options around when the sensitivities occurred. It is entirely possible that the correlation between persisting symptoms and the 'sensory reactivity' subscale of the RAADS-14 is because people with persisting symptoms are experiencing noise sensitivity that they did not previously and are taking to their bed when they have PEM.

They only assessed using a scale for autism. They can't then make a claim about a wider neurodivergence category.



This is a mediocre paper. It does not explain its methodology clearly enough, it states things as facts that are not known (e.g. that central sensitisation explains ME/CFS), and reeks of prejudice against people who are experiencing persisting symptoms (e.g. that they have not tried to return to normal activities).