THE MISREPRESENTATION OF PARALYSIS IN PEOPLE DIAGNOSED WITH ME/CFS.
THE MISREPRESENTATION OF PARALYSIS IN PEOPLE DIAGNOSED WITH ME/CFS.
Stonebird.
Paralysis is a symptom that is rarely highlighted in the literature for ME/CFS. Why is it not being properly investigated or researched? Why is it so often denied and underplayed?
It is easy to use the word paralysis, but does that mean the same experience and cause for each person?
People with an ME diagnosis, who experience temporary stroke like episodes or muscle weakness and partial or full temporary paralysis, may have a missed diagnosis due to poor investigation and poor diagnostic criteria or even a misdiagnosis.
There is a real danger of misrepresenting the true nature and reality of a person’s temporary paralysis by using words like ‘paralysis -like’ or you just ‘ feel’ paralysed. This opens up the possibility of misinterpretation and misunderstanding, as if it is somehow all in your mind or only feels like paralysis and opens the door to psychiatric misinterpretation and mistreatment or FND diagnoses.
Just because paralysis is temporary rather than permanent does not mean it is any less real or not disabling, like other better recognised diseases displaying permanent paralysis. They just have a different physiological pathway, underpinning the physical experience. Using words that minimise this reality is not helpful.
Clinicians should be aware that Channelopathies can cause temporary disruption of iron channels that lead to temporary muscle weakness and paralysis. In Hemiplegic Migraine, for example, the channelopathy, a temporary iron dysfunction, is in the brain. In Periodic Paralysis the channelopathy is in the muscles. Both can exhibit temporary weakness and /or partial to full temporary paralysis.
People who have an acquired or genetic channelopathy do not experience ‘paralysis-like symptoms'. Even if the paralysis is temporary, it is still very real. It may also manifest as muscle weakness.
In ME there may well be an associated channelopathy involved in this very disabling, debilitating and fluctuating condition. Chaudhuri and Behan have researched this possibility previously and in Australia at Griffith University, there has been progress in recognizing the involvement of a calcium channelopathy in ME, though it does not appear to reference paralysis specifically. Yet how many people are aware of this, we wonder?
A channelopathy is a well recognised physiological mechanism that should gain greater respect for people so often dismissed with an ME/CFS diagnosis, who have little evidence or explanation of the biology of their symptoms.
Just because paralysis is only temporary, it makes it no less a real phenomenon, but can often lead to a lack of belief and misunderstanding or misrepresentation. Because paralysis is often ignored, downgraded, dismissed, misinterpreted or at best recognised, but not explained, there may well be people in the ME/ CFS community who have treatable symptoms or can gain better understanding and a more respected diagnosis for their paralysis.
People may say, for example, that they have migraine, but we wonder how many people have seen a neurologist and had this diagnosed as the serious neurological disease that it is in its own right, with complex symptom patterns that may have a range of potential treatment options?
How many people with an MECFS diagnosis have migraine and also experience some sort of temporary paralysis and therefore could, perhaps be experiencing hemiplegic migraine?
Paralysis needs better recognition, better investigation, better respect, and appropriate language used to describe and honour the person’s true reality. It has to be acknowledged that it is incredibly difficult to be taken seriously once you have an ME/CFS diagnosis, particularly by rare disease specialists. There are a range of possible alternative diagnoses for people experiencing temporary paralysis.
Each person deserves the respect of knowing what is the cause of their paralysis. It is not an easy path to keep fighting for an explanation though and may take many years once you can get a clinician interested enough to recognise paralysis and pursue a correct diagnosis,because testing takes a long time and each disease tends to be considered one after the other, in our experience.
The person who endures continual bouts of paralysis needs medical explanations, support and needs much better help than being left alone to get on with it.
Arguing your corner should not be as difficult as it is. Respecting the person‘s reality by using appropriate language is the first step.
L & G Crowhurst
Refs:
The Experience of Paralysis in Severe ME
Neurological Channelopathy in Chronic Fatigue Syndrome (ME/CFS)?https://phoenixrising.me/.../a-neurological.../
New research confirms people with ME/CFS have a consistent faulty cellular structure
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