This is an excerpt from the eBulletin of ME/CFS Australia (SA).
This has been a big week in ME/CFS communities around the world, with a rather sensational announcement by the Whittemore-Peterson Institute in the USA. [Many will remember Dr Dan Peterson who spoke at Norwood Town Hall last year, and told us then of his new project at the Institute part-named in his honour].
The institute announced that they had detected the retroviral infection XMRV in ME/CFS patients. They tested ME/CFS patients and found initially almost 70% had evidence of XMRV infection. More specific testing later on found the number climbed to about 95% of about 100 patients with ME/CFS who tested positive to XMRV or antibodies to XMRV. The numbers among the control group were under 4% of over 200.
www.wpinstitute.org/xmrv/index.html
Also an informative Q&A on this at
www.wpinstitute.org/xmrv/xmrv_qa.html
On the face of it, this looks very promising. If only ME/CFS patients had a viral infection, and the general population did not, then it would look like we had found either a cause or an effect of ME/CFS. However, we have all learnt to beware of first announcements. We have been down similar paths with Epstein-Barr virus, HHV-6 – and others.
This discovery does look more convincing than any previous, but we now know that ME/CFS patients are not the only people showing high levels of infection by the XMRV virus. Fibromyalgia patients tested by the US team also were over 90% positive for XMRV. Those of us with both ME/CFS and fibromyalgia won’t be surprised in the least by that, since we know there is a huge crossover. But we also know now that Atypical MS patients have tested positive for XMRV. So, maybe this virus is something that is implicated in a range of auto-immune disorders. In any case, I recommend that you read the UK ME response for a thoughtful response:
www.meassociation.org.uk/content/view/1042/161/
In fact, if you read the whole of the Q&A page at the W-P Institute site, you will see that they also recommend not jumping to conclusions (especially about whether and how XMRV may be “caught”) at this preliminary stage. In summary, these are exciting initial findings and we need follow-up as soon as possible, but we should be cautious about making too much of them yet.
Meanwhile there is a discussion on this topic happening on our Facebook site:
www.facebook.com/topic.php?uid=44893280104&topic=11145
And Peter Scott, our web manager par excellence, is keeping us up to date with all the media responses [there have been many] at http://www.sacfs.asn.au
