I was once pronounced clinically dead with Cerebral Malaria.
It was a misdiagnosis but I recovered from that much quicker
than I've recovered from Covid-19.
It's a strange disease Covid-19,
it has a whole series of weird symptoms
which can go off in almost any direction.
I had it a bit before Christmas but I still haven't completely recovered from it.
And yet I'm one of the lucky ones because so far touch wood
I don't have symptoms severe enough to say I've got Long Covid.
Long Covid has many different aspects they include long-term lung damage,
heart damage, brain damage,
causing brain fog and neurological disorders.
There's a whole range of symptoms associated with it,
but there's one cluster of symptoms which quite a lot of people
with Long Covid seem to have which rings a bell.
And these are symptoms which look very similar
to those of M.E. and or Chronic, Fatigue, Syndrome.
ME/CFS is a condition which just knocks the stuffing out of you,
it's often characterised by extreme fatigue you go to bed but you don't
get any less tired but if you try to exert yourself physically or mentally
it can really knock back your health and have very serious impacts
making you extremely unwell for a long time.
And so everything you do to try to ameliorate your condition,
to get out and about to meet people again actually sets you back,
it doesn't make you better it makes you worse.
And many end up housebound or even bed bound for decades.
And if as it now seems Covid triggers in a large number of people
symptoms very similar to ME/CFS then we're looking at a public health disaster.
A tsunami of post-viral illness afflicting huge numbers of people.
"How would you rate your breathing your breathlessness on that scale? - 8 or 9.
"And what about your legs how fatigued would you say your legs are?
On that scale of 0 - 10, 0 being nothing 10 being the worse you can imagine? - 10.
I look normal but I feel like my body is like totally breaking down inside."
Why aren't we talking about this?
Well it could be because this cluster of symptoms this condition ME/CFS
has been massively neglected for decades.
Some of it dates back to a paper published in the British Medical Journal in 1970,
by researchers looking into sudden post-viral events
where very large numbers of people went down with ME/CFS.
And without interviewing any patients or any doctors they concluded
that this disease was effectively imaginary that it was all in the mind.
People thought they had this disease when they didn't actually
have anything wrong with them at all.
They dismissed it as 'mass hysteria'.
On what grounds?
Primarily on the grounds that the majority of sufferers were women.
That was it.
That was their reasoning that was the science behind that conclusion.
It wasn't science it was misogyny.
And there's research showing that illnesses that mostly afflict women
receive less funding than illnesses that mostly afflict men.
And that they have repeatedly through history been dismissed
as psychosomatic or hysterical or imaginary.
And astonishingly even today there are multiple reports of ME/CFS patients
saying my doctor isn't taking me seriously they just dismiss me.
People have even been sectioned for insisting that they have this condition
insisting that it is, as we now know, a real condition.
But because doctors refuse to believe them and because they persist in this belief
they get sent to a psychiatric ward against their will.
One of the most fundamental principles of medicine is that
doctors must listen to the patient and take the patient seriously.
Now they might be right or wrong but the doctor must be listening
must be taking them seriously must be investigating it until
all the possibilities have been eliminated and that doctor knows,
or has a good chance of knowing, what's really going on.
Now all this is pretty grim but the one hopeful thing
is that now that there is attention on Coronavirus and some people at least
are beginning to pay attention to its post-viral impacts.
This could prompt the research and attention
that ME/CFS has been lacking for so long.
And it could be that finally we start to see some serious money invested
into finding out more about this condition devising a diagnostic test hopefully
and maybe one day even devising a treatment and a cure.
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