The extracellular matrix integrates mitochondrial homeostasis, 2024, Zhang et al.

Something I learnt as a rheumatologist is that 'not-quite Marfan's' or what is often called Marfanoid has nothing whatever to do with Marfan's itself - which you either have or do not have. A Marfanoid body is well within the range of normality. The deformities of true Marfan's are quite specific.

I'm wondering more if there's some sort of genetic / epigenetic hint which might elicit mechanisms as marfanoid seems anecdotally to be common in teens with ME/ CFS.
 
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I'm wondering more if there's some sort of genetic / epigenetic hint which might elicit mechanisms as marfanoid seems anecdotally to be common in teens with ME/ CFS.

It would be interesting to know if there is in fact any association with height or span. (Marfanoid of course does not particularly imply hypermobility. It would be a separate association, which starts to get complicated.) A paediatric service could check through the height statistics for its ME/CFS diagnosed patients fairly easily. It would be one of the few objective things that might show something interesting. Height would of course need to be assessed in centile for age.
 
A paediatric service could check through the height statistics for its ME/CFS diagnosed patients fairly easily.


I don’t understand how this would tell us anything useful without control groups.

How common might these proportions be in the general population? Families? (Edited to be clearer)

As I suspected my arm span is longer than my height; we’ve just measured. I also know that is true of one of my sisters who was measured when she received her CFS and hEDS (“with marfanoid features”) diagnosis. We’re the only ones in the family with ME/CFS. I’m shorter than average, my sister is taller than average.

I believe if other healthy members of my family were measured we’d find the same proportions in some of them (it’s a body type some of us inherited from my father, and possibly my grandfather from what I have been told though I never met him). I don’t know anything about genetics but wouldn’t that suggest a genetic link for those features in my family but not necessarily a connection to ME/CFS? If anyone’s interested I don’t think my family would mind doing some measuring.

eta - there’s also a lot of hypermobility in my family.
 
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I don’t understand how this would tell us anything useful without control groups.

I think in this context the standard paediatric centile height charts would be adequate. They derive from vast amounts of data on normal children. A height of 5 foot ten in a twelve year old girl is going to be in a high centile (i.e. statistically at the very top end). There will be centiles for span to height ratio in the Marfan literature from normal populations I suspect. If the mean for an ME/CFS population is different from the 50th centile on the charts then there may be something interesting to look into.
 
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