Evidence that M.E. isn’t contagious?

[forestglip]

There appear to be organizations like the Scandinavian Donations and Transfusions database (SCANDAT) that do these kinds of studies:

No evidence of transfusion transmitted sporadic Creutzfeldt-Jakob disease: results from a bi-national cohort study (2020, Transfusion)

We identified 39 donors with a subsequent diagnosis of sCJD. No cases of CJD occurred among the 883 recipients of blood products from these donors. A total of 89 CJD cases were identified among recipients of transfusions. No clustering of cases from the same donor occurred.

 

[Sasha]

I wonder if it'd be possible to do a study that tracks blood transfusions to see how their health compares afterwards depending on if they received blood from someone with ME/CFS or other conditions vs healthy donors.

That's a clever idea but in the UK at least, PwME aren't allowed to donate blood:

In November 2010, anyone who had or did previously have ME/CFS was excluded from giving blood in the UK.

This was after the ME Association wrote to Dame Sally Davies – the then Chief Medical Officer at the Department of Health – to highlight the possible risk of a retroviral infection known as XMRV being transmitted by blood. In his letter, Dr Shepherd referred to the fact that XMRV was being considered as a possible cause of ME/CFS at this time.

After XMRV had been disproven as being a cause of ME/CFS, the NHS Blood and Transfusion service decided that the ban would remain. This was primarily because of donor safety given the amount of blood loss involved during blood donation which could exacerbate ME/CFS.

 

[forestglip]

That's a clever idea but in the UK at least, PwME aren't allowed to donate blood:

Yes, it'd have to be somewhere that does allow it. The US does, but I'm not sure there's a good enough connection in the US between the blood donation organization Red Cross and patient health records to study it.

I was wondering about the Scandinavian system that did the study above, but apparently as of 2010, Norway doesn't allow pwME to donate as well. Not sure about Sweden.

Today, the Directorate of Health sent a letter to all blood banks in the country, stating that patients who have been diagnosed with ME should not be accepted as blood donors in this country either.

[...]

In the letter, the Directorate of Health clarifies that blood donors must be healthy.

"No one who feels sick should donate blood. It follows that patients diagnosed with ME/CFS should not be accepted as blood donors," the letter states.

Edit: Oh I think that organization SCANDAT is just for Sweden and Denmark. Not sure if either of those countries ban pwME from donation.

 

[Kitty]

In the light of small studies showing blood components from people with ME/CFS negatively affecting cells taken from healthy people, I'd imagine no one would want to take the risk.

They might be small studies, but until someone redoes them and fails to replicate the effect, surely it has to be considered potentially unsafe.

 

[forestglip]

In the light of the small studies showing blood components from people with ME/CFS negatively affecting cells taken from healthy people, I'd imagine no one would want to take the risk.

They might be small studies, but until someone redoes them and fails to replicate the effect, surely it has to be considered potentially unsafe.

I don't mean a study that asks people with ME/CFS to donate. I mean just looking at health records in places where transfusions from donors with ME/CFS are already happening.

 

[Utsikt]

Yes, it'd have to be somewhere that does allow it. The US does, but I'm not sure there's a good enough connection in the US between the blood donation organization Red Cross and patient health records to study it.

I was wondering about the Scandinavian system that did the study above, but apparently as of 2010, Norway doesn't allow pwME to donate as well. Not sure about Sweden.


Edit: Oh I think that organization SCANDAT is just for Sweden and Denmark. Not sure if either of those countries ban pwME from donation.

I’ve tried to look into this in Norway previously. You can’t donate if you are sick or feel sick. There are other rules as well, but no exemptions from those two.

 

[forestglip]

Maybe something a bit different to this could be done in any country: look at new incidence of ME/CFS in both donors and recipients after the transfusion. It's possible there's something in the blood that increases the risk of ME/CFS, so maybe those who receive blood from people who go on to develop ME/CFS are more likely to also go on to develop the condition.

I'm not sure there'd be enough incentive to undertake that study, but maybe it'd be worth it to trawl for associations of new incidences of any conditions between donors and recipients: cancer, autoimmune, neurodegenerative, etc.

 

[bobbler]

Yes, it'd have to be somewhere that does allow it. The US does, but I'm not sure there's a good enough connection in the US between the blood donation organization Red Cross and patient health records to study it.

I was wondering about the Scandinavian system that did the study above, but apparently as of 2010, Norway doesn't allow pwME to donate as well. Not sure about Sweden.


Edit: Oh I think that organization SCANDAT is just for Sweden and Denmark. Not sure if either of those countries ban pwME from donation.

Could the pattern that the systems that have tracked it and know in future a recipient could track it back ie legal case possible have banned donations from pwme? Is that really where the answer hides?

 

[Sean]

There is a blanket ban on blood donation for those with ME/CFS in Australia, which I support on precautionary grounds. I have an uncommon blood type and used to give blood regularly before getting ME/CFS. I decided to stop not long after getting it, years before getting diagnosed, and decades before it was banned.