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So, my thoughts on the post-Covid web portal and £8 million for research.
Imagine you're starving, right?
You walk for miles and find a decent little cafe offering free soup. You ask for a bowl. Nothing fancy, just basic nutrition.
They give you a single chocolate button.
/1
Imagine you're starving, right?
You walk for miles and find a decent little cafe offering free soup. You ask for a bowl. Nothing fancy, just basic nutrition.
They give you a single chocolate button.
/1
You eat it. It’s nice. But it isn’t what you need, and it isn’t what you asked for.
You feel bad. You want to be positive. You’re not sure if you should say something.
Well, I'm saying something.
The Government aren’t offering enough. Not by far.
/2
You feel bad. You want to be positive. You’re not sure if you should say something.
Well, I'm saying something.
The Government aren’t offering enough. Not by far.
/2
In Edinburgh, we have a post-Covid helpline. It’s self-help focused.
From what I've heard, most people get leaflets. I get physio, as I cannot walk well.
And it's been good... it's just not enough.
Their scope is a chocolate button.
/3
From what I've heard, most people get leaflets. I get physio, as I cannot walk well.
And it's been good... it's just not enough.
Their scope is a chocolate button.
/3
Of course, I don't know what the English service will look like.
I imagine it will be informative, like the existing tools from NHS trusts, and the British Lung Foundation.
Tools we don't need duplicated.
Tools that aren't a substitute for specialist investigations.
/4
I imagine it will be informative, like the existing tools from NHS trusts, and the British Lung Foundation.
Tools we don't need duplicated.
Tools that aren't a substitute for specialist investigations.
/4
Why is support so light? Because they’re calling this Post Viral Fatigue.
Though PVF may explain some experiences, and while it deserves recognition, it is part of a bigger picture of #LongCovid symptoms.
I talk about this here: http://bit.ly/2ZTtCUX
/5
Though PVF may explain some experiences, and while it deserves recognition, it is part of a bigger picture of #LongCovid symptoms.
I talk about this here: http://bit.ly/2ZTtCUX
/5
#LongCovid is an inclusive term encompassing numerous experiences – including possible PVF, as well as symptoms of dysautonomia, mast cell issues, ongoing infection, organ damage, and other complications.
It recognises the disease as new, complex, and in a state of flux.
/6
It recognises the disease as new, complex, and in a state of flux.
/6
We don't know what it will be called a year from now. It may fall under an existing umbrella, or it may get its own terminology, like Post-Sepsis Syndrome.
But given the complications, an open name makes more sense for now.
/7
But given the complications, an open name makes more sense for now.
/7
I've seen, maybe, a thousand home cases in the support groups.
Blood clots.
Lung damage.
Percarditis.
Silent hypoxia.
Right ventricle this and left-valve that.
Problems not always detected in the standard suite of tests.
Problems not solved by pacing and turmeric.
/8
Blood clots.
Lung damage.
Percarditis.
Silent hypoxia.
Right ventricle this and left-valve that.
Problems not always detected in the standard suite of tests.
Problems not solved by pacing and turmeric.
/8
But the Government keep subscribing to the label of PVF, because it’s familiar and, in their stigma-stained eyes, benign.
Something cheap. Treatable with leaflets and CBT.
And £8million for research? It sounds like a lot, doesn’t it? It isn’t.
/9
Something cheap. Treatable with leaflets and CBT.
And £8million for research? It sounds like a lot, doesn’t it? It isn’t.
/9
Imagine if 100, 000 people with #LongCovid got an extensive medical work up – comprehensive scans, bloods etc. That might cost, say, £2000 a head.
How many of us are *desperate* for that level of investigation?
That’s £20 million right there.
/10
How many of us are *desperate* for that level of investigation?
That’s £20 million right there.
/10
I’m sorry if this sounds cynical.
I hope this is the start, and not the beginning of the end. Given this Government’s criminal incompetence, I find it hard to see this as anything more than lip service.
This isn't recognition. Keep fighting.
We're not done, @MattHancock.
I hope this is the start, and not the beginning of the end. Given this Government’s criminal incompetence, I find it hard to see this as anything more than lip service.
This isn't recognition. Keep fighting.
We're not done, @MattHancock.
