Evidence that M.E. isn’t contagious?

[PageofME]

Hi, I have recently started a new relationship and my boyfriend has admitted to having a slight worry that he can ‘catch’ M.E. from me. Does anyone know something I could give him to read to reassure him that it isn’t contagious? Thanks

Hi Sandra, since the pathomechanism of ME/CFS is not known and there are pathogenic and not pathogenic mechanisms hypothesized to drive the illness we don't know whether for sure whether ME/CFS is contagious or not.

I think that I might have caught ME/CFS from a mild acute patient on a date through a kiss. This person complained to me a couple of days later that they experienced fatigue, feeling flu-like and with a sore throat after running.

My theory is that because of chronic distress and malnutrition I had a weakened immune system at the time – this is known as a trigger for ME/CFS by itself already. But because I had my first ME/CFS episode (a severe episode that went away completely after resting for six weeks) shortly after that date I suspect that it could have had an influence.
Since I was a mild patient after that first episode and had only mild flare-ups of just a couple of hours or days for the next three years I didn't give the idea of contagion a thought after I was diagnosed and believed like everyone else here that ME/CFS was not contagious.

However, over the years I realised that there are many families with two or more ME/CFS patients where not only one parent and children are affected but also cases where both of the parents or couples without children are ill. And about two weeks ago I realized that if it turned out to be true that chronic HHV-6B reactivation was the driver of ME/CFS – which is in my view the most convincing idea about the pathomechanism because I can fight my flares with a herpes drug – it might well be that the high viral loads in the saliva of acute patients (patients who experience a flare-up or an episode often rather referred to as PEM or a crash by the patients) could overwhelm the immune system of someone they are intimate with or eat from the same bowl. Even when this person has already built a resistance to HHV-6B because of a primal infection in childhood.

Therefore and on the grounds of my personal experiences and opinions on the matter my advice would be to strictly refrain from being intimate with your partner while you are acute with an ME/CFS flare-up or more severe episode (with flu-like symptoms) and for some days after in the short term to stay on the safe side.

If you find a doctor and/or a lab that is ready to work with you on the matter you can test your HHV-6B loads in saliva regularly yourself to see whether they fluctuate according to your symptom severity just as Jackie Cliff and her team have found out for a major group of ME/CFS patients.

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

 

[duncan]

Do we know definitively if ME/CFS cannot be passed from mother to infant in the womb?

 

[Kitty]

It seems unlikely the combination of events that led to the mother's ME/CFS would be reproduced in utero. The fetus is genetically different and may have a different HLA profile, so it could feasibly be at much lower risk of developing it than the mother.

There doesn't seem to be a case report of in utero transmission and babies don't appear to be affected anyway, so it's probably not a concern. Given that ME/CFS seems rare before the age of about eight, it might be necessary to get to a certain stage of immune maturity and/or to begin producing sex hormones before the error can be tripped.

 

[Jonathan Edwards]

Therefore and on the grounds of my personal experiences and opinions on the matter my advice would be to strictly refrain from being intimate with your partner while you are acute with an ME/CFS flare-up or more severe episode (with flu-like symptoms) and for some days after in the short term to stay on the safe side.

I think we may have some confusion here.

If ME/CFS involves reactivation of HHV-6 then by definition it is not 'infectious'. Reactivation involves an increase in your own viruses not getting more from someone else.

The idea that people with ME/CFS have herpes reactivation is plausible for various reasons but the original reason for looking - supposed immune deficiency - has not been replicated. We have no ongoing evidence of immunodeficiency in ME/CFS. Nevertheless, residual virus might be relevant.

But there is no clear clinical evidence for HHV6 being a trigger as far as I know. And catching HHV6 from someone else and then getting ME/CFS would be a quite different mechanism from a reactivation theory.

We try not to give any personal medical advice on the forum and I think that is a good policy. There are a lot of people who come here with very little knowledge looking for advice and they may easily get misled. I sometimes break the rule because I am a professional but even I try not to.