Without wishing to subtweet anyone, I am seeing much discussion of #LongCovid & similarities (or not) with #MECFS. I can only speak of my lived experience with the latter & the misconceptions I have seen about symptoms & diagnosis, so here is a thread about those things...
Secondly, my symptoms began not in response to a virus but to vaccinations. There was no live virus attacking my organs, no illness that I was suffering, no post-viral fatigue. Nonetheless, I experienced many of the symptoms reported by #MECFS & #LongCovid sufferers.
My doctors (GP, neurologist, rheumatologist, endocrinologist) suggested that the vaccines had triggered an extreme response by my immune system. My own body was the cause of the symptoms I experienced. A non-exhaustive list of those symptoms:
Extreme fatigue with non-refreshing sleep, uncontrollable shivers at the slightest external temperature change, heart palpitations, weakness, pain, trembling (and the "buzzing" often reported), post-exertional malaise, stomach problems, being out of breath simply walking,...
...being unable to lift myself out of bed or chairs, inflammation (causing secondary issues), near-instant lactic acid on walking, muscles aches, uncontrollable yawning, confusion ("brain fog"), microsleeps, insensitivity to medication.
As you can see, #MECFS is not simply "tiredness" & (for me at least) is not post-viral fatigue that has become chronic. It is something much, much deeper than that. This makes it very difficult to explain or to describe, but I am sure that the #LongCovid sufferers can understand.
There are clearly some #MECFS symptoms that overlap with those we are hearing about from #LongCovid sufferers, but that doesn't mean they are the same thing. Based on my experience, it also doesn't mean that they are *not* somehow the same, or related.
Our bodies are responding to something - a virus, in some cases - in ways we do not yet understand. The underlying cause is uncertain but is knowable if we look hard enough. #LongCovid sufferers have every right to help, support & research of their condition. So too for #MECFS
So, keep fighting whether you are the #MillionsMissing or those living with #LongCovid. Hold onto your Identity but keep the compassion & understanding for those on the other side of the coin, those for whom this is new & those for whom this is old.
I am early for #MEAwarenessHour, but hope you will forgive me for that.
