When I was embarking on this journey of mine, some 15 years or so ago, it seemed then that if only some proof was forthcoming, some unequivocal proof, some evidence, of a pathological nature, that could back-up the then prevalent name and associated definition attached to my diagnosis: myalgic encephalomyelitis. If only, right? Pretty sure it's what we and our doctors for that matter want. Because with a 'root' cause or evidence of something, anything, that might be involved in our debilitation, of a biological nature (obviously ) we might stand a far better chance of getting an effective treatment, and if not that, then maybe a least greater acceptance and understanding in the wider social world. Validity, right? Well, for some it looked like this might be the case with the handful (less than a handful) of autopsies that showed evidence of this basal root ganglionitis. I mean it's an 'itis', right? Encephalomyelitis, is one too? And the Basal Ganglia are kind of near the spine and associated with the nervous system, right? I've seen this association, this hope, variously stated across the internet. Unfortunately, most of the instances in which it has been used have tended to try and throw it at arguments pertaining to nomenclature: "What about dorsal root ganglionitis? THAT's proof of ME!" Most recently, the other day, I happened across this little 'gem' from ME Advocacy: I am no doctor or neurologist (obviously) and to be honest I didn't know or understand enough about the pathology to be able to comment for the most part, other than to say that until more autopsies were performed, a couple of instances will not sway any argument. The only chance of more autopsy tissue being made available for significant study are - in so far as I can see - that offered by the ME Association a project which is being held-up by cost burdens (there was an update to this effect in Essential's last week). The Biobank joint ventures won't cut the mustard - for evidence of dorsal root ganglionitis I understand you need tissue obtained from autopsy - though perhaps this 'inflammation' can be observed as is inferred above by use of some sort of scan - but I doubt it. Anyway, so I had little knowledge and therefore did not feel confident in commenting - though I did wonder as ever I do, why people who choose to make statements didn't themselves ask those who might know before broadcasting these assumptions - but there we go: c'est la vie. Then Dr Charles Shepherd in the latest issue of ME Essentials was asked the following question and responded (below). Don't get me wrong, it is a shame (in an obvious way) that dorsal root ganglionitis is not an example or proof of 'encephalomyelitis'. But we can't change pathology no matter how much easier we hope it might make things. Still, evidence is evidence and hopefully more autopsies will be volunteered, tissue collected, and studied with appropriate power. Of course dorsal root ganglionitis might be only part of the puzzle, and for some people, some of the time. But I'll take something over nothing any day of the week Any spelling mistakes are my own.