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.

 

[Utsikt]

Merged posts
---------

Reactivation of herpesviruses in Myalgic Encephalomyelitis

Human Herpesvirus 6B in Myalgic Encephalomyelitis pathogenesis: temporal analysis of viral reactivation and immunity toelucidate cause vs effect

www.brunel.ac.uk

Everything you say is compatible with HHV-6B reactivation as the cause of ME. Check out Jaqueline Cliff's research under the link above.

If it’s HHV reactivation, then ME/CFS isn’t contagious.

Cliff, Cambridge and Edwards recently published a hypothesis paper, the thread is here. I think she’s got more unpublished data (if I remember the comments here correctly), so it will be interesting to see what it shows.

 

[PageofME]

If it’s HHV reactivation, then ME/CFS isn’t contagious.

For one HHV-6B is listed on some official list of empirically validated ME/CFS triggers. I don't remember where I saw it. But I will let you know if I see it again.

I base the idea that ME can be infectious on my own experience and the observation that there are many families and couples where several who are all ill.

Viruses and bacteria have very different capacities at being contagious and also different pathways of infection. For herpes it is mainly saliva but there is also sexual transmission (especially HSV-2).

Under normal circumstances the immune system can control HHV-6B. But the immunocompromised often can't.

If you have a situation of ongoing distress, an illness or an infection as far as I understand it your HHV-6B will always go up a little bit because your immune system is a little bit compromised at controlling reactivation. See here where it is suggested that HHV-6B loads in saliva can be used as a predicter for athletic fitness to be used in training plans for sports medicine.

Evaluation of Saliva Collection and DNA Extraction Methods for Practical Application of Salivary Human Herpesvirus 6 and 7 Assays - PubMed

Salivary human herpesvirus 6 and/or 7 (HHV-6/7) have recently attracted attention as microbiological markers of physiological fatigue in laborers and athletes. However, the accuracy and efficiency of the HHV-6/7 assays can be improved for practical application. We conducted three experiments to...

pubmed.ncbi.nlm.nih.gov

If in such a situation you manage to get high loads of HHV-6B DNA additionally from outside in the form of a reinfection by the means of a kiss with an acute ME-patient (with PEM) your immune system might be overwhelmed and reach the criticial ME-threshold and you end up having your first ME-flare.

I think that that's what happened to me.

I know I can't prove it, of course. But it doesn't contradict any logic.

I am open to auto-immunity theories. However, I find them much complicated than the simple idea of HHV-6B reactivation causing ME. However, for me personally auto-immunity theories fail to explain why I can bring my ME flares (yes, I fulfilled CCC and I have PEM), fully under control with the antiviral acyclovir. And HHV-6B theory can. Acyclovir has not excellent but good activity against HHV-6B.

 

[Utsikt]

For one HHV-6B is listed on some official list of empirically validated ME/CFS triggers. I don't remember where I saw it. But I will let you know if I see it again.

I think any infection can be followed by the onset of ME/CFS, but that doesn’t make ME/CFS contagious in the normal sense of the word, because there is clearly something more needed for ME/CFS to occur. ME/CFS seems to be a reaction to infections (that by themselves are contagious).

If EBV is required for MS, that doesn’t make MS contagious.

I base the idea that ME can be infectious on my own experience and the observation that there are many families and couples where several who are all ill.

Those observations can also be explained by shared genetic and/or environmental factors.

There are a couple of threads where this is discussed, and we should probably continue the discussion there to not clog this thread.

https://www.s4me.info/threads/is-there-any-research-into-whether-me-cfs-is-contagious.16484/

Or

https://www.s4me.info/threads/evidence-that-m-e-isn%E2%80%99t-contagious.29980/

 

[PageofME]

Those observations can also be explained by shared genetic and/or environmental factors.

Well, these observations are not my argument. My argument is inspired by these observations.

But yes, let's stop discussing HHV-6B hypothesis and possible ME contagiousness here.

 

[Yann04]

the observation that there are many families and couples where several who are all ill.

Couldn’t that be explainable through genetics and shared trigger?

For example both my mum and I got sick after the same COVID infection.

I assume we both shared genetic susceptibility and we also both got an infection that for one reason or another was particularly prone to causing post-viral illness.

If you have a situation of ongoing distress, an illness or an infection as far as I understand it your HHV-6B will always go up a little bit because your immune system is a little bit compromised at controlling reactivation. See here where it is suggested that HHV-6B loads in saliva can be used as a predicter for athletic fitness to be used in training plans for sports medicine.

One could also interpret this the other way around. That the bodily stress of ME makes HHV6 more likely to reactivate. And so it’s more a consequence than a cause.

Obviously none of us can be sure we’re right as we just don’t have the data for now.

 

[PageofME]

Couldn’t that be explainable through genetics and shared trigger?

For example both my mum and I got sick after the same COVID infection.

I assume we both shared genetic susceptibility and we also both got an infection that for one reason or another was particularly prone to causing post-viral illness.

One could also interpret this the other way around. That the bodily stress of ME makes HHV6 more likely to reactivate. And so it’s more a consequence than a cause.

Obviously none of us can be sure we’re right as we just don’t have the data for now.

I think they are all good explanations. But none of them is a proof that it is impossible that some patients might have caught ME directly from an acute ME patient - like I think was the case for me.

 

[Jonathan Edwards]

I think they are all good explanations. But none of them is a proof that it is impossible that some patients might have caught ME directly from an acute ME patient - like I think was the case for me.

I don't understand what this means. If we know infections trigger ME/CFS then you can presumably get ME/CFS from catching the infection from someone else. I am not sure it helps to call that 'catching ME directly'. What more would that mean?

 

[Hutan]

For one HHV-6B is listed on some official list of empirically validated ME/CFS triggers. I don't remember where I saw it. But I will let you know if I see it again.

I wrote the following as part of a review of an UNREST education resource (a video):

0.53 I think this may be the source, or at least a source, of what I think is the misleading idea that HHV6 is a trigger of ME/CFS. Given that most people get HHV6 when they are a child, it doesn't seem likely that an HHV6 infection is a trigger of ME/CFS. It's possible that it reactivates around the time of ME/CFS onset, due to the person being immunocompromised, in the same way that HSV also often reactivates. Maybe it's even that cause of ME/CFS. But, I don't think it's accurate to say that we know it is a trigger in the same way that EBV or SARS-CoV-2 are.

I don't think we have any evidence that people are getting ME/CFS as a result of a late primary HHV-6 infection i.e. after say age 5, although it would be interesting if we did.

 

[PageofME]

I wrote the following as part of a review of an UNREST education resource (a video):


I don't think we have any evidence that people are getting ME/CFS as a result of a late primary HHV-6 infection i.e. after say age 5, although it would be interesting if we did.

And I didn't say we have. : )
Many thanks for moving posts and more instructions on how to use the plattform.

 

[PageofME]

Thanks for clarification. I wasn't sure at all what you were implicating.

Over the past years I was very active in teaching new COVID-trigger ME-patients on a German speaking online platform and in the comments section on Cort's Health Rising that the theory that COVID somehow stuck around and caused ME wasn't a very compelling idea because there were so many different pathogenic but also non-pathogenic factors known to set off ME.

And of course to make them aware that ME/CFS might represent chronic HHV-6B reactivation.

In Zurich there is an experienced ME/CFS clinician who made me aware that we shouldn't think that there is always one clear trigger like an infection but that we should understand the cause of the onset of ME/CFS in other patients rather as possibly having different factors who add up maybe sometimes over years.

I think that that's very interesting because I can remember two things looking back at the last weeks before I got my first ME episode. High distress and kissing someone on a date who complained to me a couple of days later about having recurrently felt and ongoing feeling flu-like, fatigued, and with a sore throat after running.