UK: “Stronger Together” – ME/CFS Alliance 20th Anniversary event, The Pavillion, Winchester Cathedral, 4th March 2026: 10.30-4.00

V.R.T. said:
A lot of people including myself have transient episodes of paralysis. I think it would be misguided to dismiss this as it is a quite commonly reported symptom, even if it is not universal.
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We have discussed this before and I tend to agree with Nightsong from a medical perspective. In medical terms paralysis is used to imply a failure of motor nerve pathway or muscle function leading to complete loss of power in an area. Complete inability to move a limb, or the whole body, can occur for other reasons. One is pain. Another is severe vertigo. Another is syncope. The terminology is muddled but we tend not to refer to these as paralysis. Moreover, the general public tend to understand the distinction.

People with ME/CFS on the forum report episodes of being unable to move either certain limbs or in general. However, I have not seen any medical reports of paralysis in the usual medical sense. It is difficult to know what these episodes are due to without that documentation. That is a pity because if this could be documented properly we might learn something important.

What worries me is that claims of episodes of paralysis in ME/CFS are used as evidence for an "ME" style neurological disease - an encephalitis maybe - of the sort rather poorly documented at the Royal free in 1955. This perpetuates the myth that ME/CFS is a neuroinflammatory disease with localising neurological signs, which it isn't.

Better documentation of very severe ME/CFS seems to me to be something we badly need. Despite there being physicians who have specialised in advising on management of very severe patients there is virtually nothing documented in the medical literature - which is strange.
 
Jonathan Edwards said:
People with ME/CFS on the forum report episodes of being unable to move either certain limbs or in general.
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This is what I was referring to. I wasn't aware of the medical distinction.


Jonathan Edwards said:
Better documentation of very severe ME/CFS seems to me to be something we badly need.
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Agreed, we desperately need better understanding of very severe. Although to be clear about the paralysis episodes, for me these episodes started when still mild but starting to deterioate. My partner is moderate but has experienced them in her more severe bouts, whilst a friend who is very severe has never experienced them.
 
Even the video here is an odd mix, in that it talks of some quite severe symptoms and yet also the people are up to interviews, out in the world, walking around, in the garden in a wheelchair. Many would love to do those things!

There seems to be a lack of representation of severe (and certainly very severe) in the media, research and medical literature. I think it gives people of all backgrounds and roles a distorted idea of what the condition is or can be for so many. I’m not sure how we can change that.
 
V.R.T. said:
When I have the energy I will try and reply to this in detail.
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My illness started like this on January 9, 2022, around 6 PM. I was playing a video game, my leg was on the table, and I tried to get up. I fell to the floor; my right quadriceps wasn't responding... it was vibrating like a phone! I was able to get up 10 seconds later. After that, a few hours later, I started experiencing symptoms that have never left me: a burning sensation on my skin, paresthesia, tingling all over my body, and chills that have never gone away (no burning skin now). They start at the back of my neck and go down to my thighs. In short, four years later, I've been bedridden for a year in very severe condition. At the time, I had everything done: brain and spinal MRIs, blood tests (they found an old, untreated Lyme infection, a positive Western blot... I thought that was it, but it wasn't...). In short, I won't forget this paralysis of my right quadriceps : the beginning of the end.
 
neophyte32 said:
I fell to the floor; my right quadriceps wasn't responding... it was vibrating like a phone!
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That sounds like a central neurological problem, possibly motor cortex, mid brain or basal ganglia, just conceivably spinal cord. If it settled in 10 seconds there would be no structural change though. I cannot think of any recognised neurological problem that would quite fit, but vibrations or rhythmic oscillations can occur in limbs with reflex sympathetic dystrophy and in that case nobody has any real idea what the heck is going on.
 
Jonathan Edwards said:
That sounds like a central neurological problem, possibly motor cortex, mid brain or basal ganglia, just conceivably spinal cord. If it settled in 10 seconds there would be no structural change though. I cannot think of any recognised neurological problem that would quite fit, but vibrations or rhythmic oscillations can occur in limbs with reflex sympathetic dystrophy and in that case nobody has any real idea what the heck is going on.
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Yes, my neurologist never understood... nothing showed up on the MRI. I had a tramadol addiction problem at the time; I was taking a low to medium dose for three years (75/100 mg). I had mixed it with alcohol that day (I'm convinced it was those years of opioid addiction, sometimes with too much alcohol, that wrecked my central nervous system). But what does that have to do with the MECFS? I'll never know. A few months later, my lumbar puncture revealed a high blood-brain barrier index (8.50 instead of 6.50) as well as a high CSF IgG (50 instead of 35). A few months later, my MECFS really flared up again with severe panic attacks during exertion and a sensation of oxygen deprivation in the brain.
 
neophyte32 said:
I had a tramadol addiction problem at the time; (I'm convinced it was those years of opioid addiction, sometimes with too much alcohol, that wrecked my central nervous system). But what does that have to do with the MECFS? I'll never know.
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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.
 
Jonathan Edwards said:
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.
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Yes, I think so. I've always thought that tramadol largely caused my ME/CFS. I also had inexplicable fits of anger at that time, and I still do, actually, an intolerance to cold and heat, difficulty regulating my emotions... COVID just finished me off. How can we support the brain and the central nervous system, the hypothalamus? Science still doesn't know, I imagine... I know that my ME/CFS comes from there...
 
Jonathan Edwards said:
At least we have some reason to look there now, and there are parallel situations where ways have been found to restore normal signalling, even if so far a bit unpredictable.
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You mean we're increasingly aware that the problems originate in this area of the brain? For me, it's obvious, and I've been 100% certain I have MECFS since then, though it's only been severe for a year. But how can we move forward without neurologists on our side?
Because it's rather tiresome, to put it politely, to keep seeing the same research that leads nowhere. I'm lucky to be believed because my case is clear and typical of MECFS, and I'm being offered IVIG (Intravenous Immunization), which is rare. But I'm so severely affected that I'm hesitant. I want my brain, my central nervous system, repaired. But how? Anyway, I'm getting off track. Thank you, Professor.
 
MrMagoo said:
I just assumed it’s cataplexy. Want to move but can’t. Just wait until you can. Tends to be all of me though.
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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.
 
Jonathan Edwards said:
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.
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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.
 
MrMagoo said:
I just assumed it’s cataplexy. Want to move but can’t. Just wait until you can. Tends to be all of me though.
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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).
 
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