Firestormm
Senior Member
- Messages
- 5,055
- Location
- Cornwall England
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:
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.
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 encephalomyelitis in ME
"...In ME, autopsies have already demonstrated that dorsal root ganglionitis, which is the result of inflammatory processes targeting the sensory ganglia, is present in patients. Dorsal root ganglionitis is an alternative name for sensory ganglionitis, which may occur as a result on inflammation caused by HIV...."
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
Reproduced with kind permission from Dr Shepherd and with thanks to the person who posed the question.
Question: I've followed the post-mortem research that you are involved with and noted that there are regular references to dorsal root ganglionitis being found in some of the tissues that have been examined.
Please could you explain what this means? And does this finding confirm that people with ME have inflammation (the -myelitis in encephalomyelitis) in the spinal cord?
Answer:
Dorsal root ganglionitis means that there is inflammation (-itis) in a part of the peripheral nervous system called a dorsal root ganglion.
A dorsal root ganglion is a bundle of nerve fibres that sits on one of the nerve roots that enter or leave the spinal cord. This is the long nerve that passes down the back inside the bony vertebrae - it sends and receives information to and from the brain.
The nerve roots that enter and leave the spinal cord have two main functions. Incoming information is largely sensory - relating to things like pain and touch - whereas out-going information largely concerns the passing on of instructions, e.g. creating muscle movements. Dorsal refers to the back of the spinal cord.
A dorsal root ganglion forms part of the sensory nerve root that enters the spinal cord - so it's involved in processing sensory information.
Inflammation in a DRG could therefore result in some of the sensory symptoms that occur in ME - pain, loss of sensation, abnormal sensations (paraesthesiae).
It's also interesting to note that the presence of dorsal root ganglionitis in Sjorgen's Syndrome has been linked to a peripheral neuropathy sometimes seen in this condition.
Although ganglionitis means inflammation, and this may well involve infection, the relationship to ME/CFS remains uncertain as this is only a preliminary finding in a small number of post-mortem cases.
A number of infections can cause ganglionitis - so it could have been caused by a previous infection not even related to ME.
As the DRG are anatomically outside the spinal cord, this finding is not the same as having inflammation in the spinal cord.
So, while the finding does support a role for inflammation in the nervous system for ME/CFS, it does not mean that spinal cord inflammation is also present.
Dr Charles Shepherd, Honorary Medical Honorary Medical Advisor The ME Association.
Any spelling mistakes are my own.