Episodes of extreme weakness or paralysis

[Jonathan Edwards]

I just assumed it’s cataplexy. Want to move but can’t. Just wait until you can. Tends to be all of me though.

That would be intriguing since we have been discussing the relation of ME/CFS to narcolepsy.
The odd thing is that cataplexy is usually brought on by pleasant surprise (not by nasty surprise). It seems to be triggered by some very specific events associated with emotion signalling, maybe insula or amygdala or something. But perhaps there is a variant that isn't that has some link to ME/CFS.

 

[V.R.T.]

That makes it sound as if a CNS event triggered by chronic pharmacological issues led on to an ME/CFS course rather than being a feature of the ME/CFS that followed?

If ME/CFS involves synaptic control somewhere around the hypothalamus, as various things might suggest, then it wouldn't be too surprising that if could be set in motion by other CNS problems as much as cytokines or lymphocytes from infection I guess.

Well, that's another point in favour of my theory that my alcoholism was a factor in my developing MECFS.

Although I had a clear infectious trigger at least for my definite onset, and my prodromal onset (or whatever) happened during a winter when I was going to a lot of pubs and parties, and I'm sure I remember having a bug or two.

Hopefully if the CNS event trigger is the really a factor we will still be able to break the signalling cycle via the immune part of the loop.

 

[Kitty]

I just assumed it’s cataplexy. Want to move but can’t. Just wait until you can. Tends to be all of me though.

Mine's a bit cataplexy-like, but the trigger's different: mostly rest or cold, but high carb loads can also do it.

It only affects my limbs and a small patch under my chin, everything else is fine. I used to be unable to move for about 30 to 40 minutes. The last episode was the morning Tony Blair was elected in 1997; since then it's only been partial, so I can move my limbs but not control them very well. If I try to walk I stagger as if I'm drunk.

It's never been a frequent occurrence, and I only get it now when I'm particularly well. At those times I'm more likely to go out in the cold for long enough to affect my muscles, or collapse for a rest after doing sustained activity.

The first episode coincided with getting ill, but also with menarche (unusually late at 17).

 

[Jonathan Edwards]

It only affects my limbs and a small patch under my chin,

I have never been able to move a small patch under my chin.
I guess this is something else.

 

[DHagen]

Well, that's another point in favour of my theory that my alcoholism was a factor in my developing MECFS.

Same - especially with no obvious preceding infection. In my own case - and, to be clear, only in my own case -, I've always been pretty certain that this is all fundamentally my fault.

 

[V.R.T.]

I've always been pretty certain that this is all fundamentally my fault.

I sometimes feel this way too. But I don't think it's a good way to look at things really.

 

[Cinders66]

There is also no evidence that ME/CFS is associated with episodes of paralysis, as a patient apparently associated with this conference claimed in the BBC news segment. This kind of confusion with other distinct conditions remains as counterproductive as ever.

except really life cases like my deceased pen pan Lynn gilderdale - lots of coverage of her case in news archives - who had this long-term and probably others. ! I'm not sure what evidence can be expected if most of the very severe have no connection with Drs who write material …. except from cases being heard of? …im pretty sure this is a feature of well know figure Linda crowhurst’s severe m.e too.

 

[Kitty]

I have never been able to move a small patch under my chin.

The muscle that moves the middle of my tongue upwards goes a bit floppy. I can curse the cat well enough for all practical purposes though.

 

[Jonathan Edwards]

I'm not sure what evidence can be expected if most of the very severe have no connection with Drs who write material

There is certainly a problem with documentation but there have been a good number of physicians who have written about ME/CFS who have definitely had experience with severe and very severe cases. Over a period of 70 years at least we have seen no documentation of localising signs such as paralysis. The Royal Free cases should be excluded because nobody really knows what was going on acutely and the documentation is not very convincing anyway.

(I think these posts should be on another thread, sorry.)

 

[MrMagoo]

I do think I’ve had narcoleptic incidents, but they feel very distinct from MECFS. I don’t know if you can have intermittent narcolepsy.
The cataplexy ones some are after laughing, they seem different than the ones where you’re too fatigued to move to say, get off a bus.

My tounge is a separate issue; it works well enough in English but it won’t roll its r any more, can’t do Scottish accent now.