#LongCOVID
Just an FYI for anyone who has been diagnosed with ME/CFS who has had COVID-19 and is thinking of donating convalescent plasma:
People with ME/CFS are not allowed to donate blood (at least in the UK).
You might not be told this as not everyone knows.
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Just an FYI for anyone who has been diagnosed with ME/CFS who has had COVID-19 and is thinking of donating convalescent plasma:
People with ME/CFS are not allowed to donate blood (at least in the UK).
You might not be told this as not everyone knows.
1/
Why can't people with ME/CFS donate blood?
Officially:
Originally the ban was introduced because it was unclear whether ME/CFS was transmissible by blood (e.g. possible virus in blood).
Currently it's because the NHS says donating could make our condition worse.
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Officially:
Originally the ban was introduced because it was unclear whether ME/CFS was transmissible by blood (e.g. possible virus in blood).
Currently it's because the NHS says donating could make our condition worse.
2/
Unofficially:
In recent years early evidence has emerged from a few different research groups including at the NIH & Stanford, which looks like there is an as-yet unidentified "factor" (molecule) in ME/CFS plasma, which affects cell function.
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In recent years early evidence has emerged from a few different research groups including at the NIH & Stanford, which looks like there is an as-yet unidentified "factor" (molecule) in ME/CFS plasma, which affects cell function.
3/
We don't know what the factor is yet - experiments have just shown ME/CFS plasma exerting unusual effects on the cells of healthy people.
Therefore we don't know what effect our plasma could have on someone who is critically ill with COVID-19.
It could be fine, it could not be.
Therefore we don't know what effect our plasma could have on someone who is critically ill with COVID-19.
It could be fine, it could not be.
I'm not trying to discourage anyone who has fully recovered of who doesn't have ME/CFS from donating. It sounds like a great thing to do if you qualify.
But just realised lots of people don't know that people with ME/CFS aren't allowed to donate blood.
But just realised lots of people don't know that people with ME/CFS aren't allowed to donate blood.
Maybe this is worth considering if you have #LongCOVID and suspect you may be developing ME/CFS (i.e. if you have PEM).
If you have undiagnosed ME/CFS, it's unlikely anyone will stop you donating, but donating might not be the best idea?
If you have undiagnosed ME/CFS, it's unlikely anyone will stop you donating, but donating might not be the best idea?
P.s. The ban does not apply to research studies. If you want to enrol in a research study that involves you donating blood for scientific purposes (and not to be transfused into another person), you are allowed.
There is some evidence that people with ME may have low blood volume, so if you donate blood for research it's s good idea to hydrate well before and after you donate to help replenish your blood volume. That's what the Biobank nurse told me anyway ☺️.
P.P.S.:
Here are screenshots taken today from the UK blood donation website which says that people with CFS, ME and Post-Viral Fatigue Syndrome cannot give blood:
Screenshots taken from:
my.blood.co.uk/KnowledgeBase
Here are screenshots taken today from the UK blood donation website which says that people with CFS, ME and Post-Viral Fatigue Syndrome cannot give blood:
Screenshots taken from:
my.blood.co.uk/KnowledgeBase
Note that if you are diagnosed with PVFS and subsequently recover, you will still have a lifetime ban from blood donation (unless the rules change in the future).
