Epstein Barr Virus podcast from The Guardian

[Tia]

The Guardian science podcast has released an episode today about Epstein Barr Virus entitled

The virus that infects almost everyone, and its link to cancer and MS – podcast

https://www.theguardian.com/science/series/science

There is a brief mention of how EBV 'contributes to some cases of CFS' at about 14 minutes.

Epstein Barr Virus is particularly interesting to me because two close family members of mine have had cancers associated with Epstein Barr (one Burkitt lymphoma and one Non-Hodgkin's lymphoma) whilst I have ME. So I believe there's something inherited that makes myself and my family members unable to deal with the virus effectively. I've also noticed ME and cancers associated with EBV (such as non-hodgkin's) both occurring in other families and I would love to know if there is a higher than expected rate of this, I expect there is.

I have been saying for years that if we had properly invested in ME research years ago, we would have found out so much that would have been incredibly useful to our understanding of other conditions such as some cancers, MS and other autoimmune conditions. This podcast makes me think I was right, imagine what we could have found out about EBV from ME and the impact that could have had on MS and cancer research!

On the podcast, they discuss the potential moderna EBV vaccine. I wonder what impact that would have on ME numbers if it was rolled out. They also hypothesise that there may be some evolutionary advantages to EBV eg. it might help B cells remain effective so perhaps vaccinating everyone wouldn't be a good idea.

[Mods - I don't know if I've posted this in the right place, I was looking for an ME in the news thread. Apologies if it's the wrong place. Also I sorry my writing went a bit big and I couldn't get it back to the normal size!]

 

[Simon M]

I have been saying for years that if we had properly invested in ME research years ago, we would have found out so much that would have been incredibly useful to our understanding of other conditions such as some cancers, MS and other autoimmune conditions.

Not to mention ME.

they discuss the potential moderna EBV vaccine. I wonder what impact that would have on ME numbers if it was rolled out.

17% of DecodeME participants report their illness began with GF.

 

[Tia]

17% of DecodeME participants report their illness began with GF.

Yes, definitely significant. I think they should have focused on this more in the podcast as it's a pretty clearly established link. Frustrating just to be a bit of a throw away observation.

I think for some people it's very clear that GF is the start. But I also wonder if there may others of us who had milder GF (perhaps not diagnosed at the time) and then progressive onset ME afterwards. I think this is a possibility for me but I put 'cause unknown' on the DecodeME questionnaire because I'm not sure. Blood tests show I've had GF at some point (I think I know when but I was living abroad and didn't speak the language at the time so didn't get a diagnosis). My symptoms were then progressive.

Or maybe there are some of us who didn't even have GF but somehow EBV is interacting with our immune systems somehow to cause the issues we experience?