Endothelial dysfunction in ME/CFS patients, 2023, Sandvik, Mella, Fluge et al

I was thinking about what JE says here re his observations regarding movement abnormalities in clinical practice with various different patient groups. How spending voluntary working time with ME patients well enough to attend events away from home, but not without physical toll, gave the chance to observe normal movements in all these individuals.

I find this so interesting. It might be one significant reason why healthcare professionals in the main have an instant read of us that in this aspect is compatible with the ideological framework that informs them we are fine, faking or making a mountain out of a minor condition, making a mockery out of those unfortunate enough to suffer real damage and disease. On the other hand it also spares us the majority of disableist mistreatment and shunning by mainstream society that affects people with visible physical impairments. We are welcome back to the non-disabled community anytime. Anytime we can pull ourselves together stop over focusing on our minor trivial ailments and get back to family/ community responsibilities, employment, sports study etc.



My own experience has been reporting some movement issues that were abnormal for me or had become more difficult to handle walking into things bruising up repeatedly, difficulty lifting foot and some, to a Dr getting checked out in the Gp surgery or by specialist (never been to a specialist specifically for this but they do ask about walking etc sometimes) they check reflexes and when the results appear normal for them they don’t allow me to talk about it ever again “yes you said that last time” “probably your CFS.”

I do not think that I am the best judge of how normal/abnormal my movements are because I mostly can’t see them. I feel them and judge from this plus some mirror checks.

But I do think that they are improved dramatically by caffeine-which I can only use sparingly or terrible side effects and loss of effectiveness- and adrenaline, I have plenty of both every time I see a doctor. I need this to allow me to escape my home to attend an appointment. So they won’t see the problem in action. But I think if they did it would most closely resemble physical exhaustion, sleep deprivation, drink or downers. If Drs saw peak PEM level movement, I don’t actually think they’d take me medically more seriously, possibly less. The shadow of functional disorders etc would probably lead them to assume the dysfunction was performative on my part. Because I do have some control. I can move in a relatively ordinary manner, I just can’t sustain or rely on this ability.

People close to me don’t comment on it and they are usually the only ones to see it. However when I could still walk outside strangers would give me a wider birth on the days I had these signs and not on others. Friends and carers would start staring at me and sometimes make comments saying they thought I was about to go over or pass out or drop something or walk into or trip over something. There were various different problems causing this. But delayed response or lack of power from muscles and momentary loss of control of an arm or leg, were part as well as loss of proprioception and dizziness.

I used to accept this as part of being ill that concerned me but I wasn’t much concerned with other people’s perceptions around this. But I’ve become more self conscious of this as I’ve become more severe and it’s got more noticeable and persistent. Partly it’s socially uncomfortable to get attention for something that can be extremely unpleasant painful and frightening. It quite obviously makes others
uncomfortable around me.

I am comparing this to how for years and years people told me that they couldn’t believe I was ill as I looked so well and seemed so full of energy. Or the different reactions when people didn’t look alarmed but would say that I was looking a bit tired maybe time to call it a night. Then when I saw them again they’d say oh you look better, you must of been really tired.

I can’t know for sure but I think looking well and energetic is having control of your facial muscles, small muscles across body and large muscles. Looking tired is losing some degree of control of your facial muscles and smaller muscle groups. Looking scary is losing some degree of control over your larger muscles, and lower body.

All the people with ME I’ve known irl moved normally just perhaps getting from rested to tired to exhausted in a shorter period than is normal.

I know I present non-disabled in terms of mobility and physical presentation even now at this severity occasionally. But not for long.

Could be an ME related movement disorder that hits some people harder than others. I have a pronounced case. Or could be a distinguishing feature that points to misdiagnosis. I don’t know. Though I do suspect a co-morbidity most because I had mild signs affecting my mobility long before ME that I put down to minor injuries from exercise. But now I am not sure.