Is myalgic encephalomyelitis/encephalopathy an inappropriate name?

[duncan]

I have wondered if we start with encephalomyelitis early on, but we aren't aware and it is not revealed, and it progresses (or decelerates?) to encephalopathy. Maybe it's how one defines inflammation. Brain markers for inflammation aren't that good, in general, and maybe nuanced inflammation flies under the radar?

 

[charles shepherd]

@leokitten - do you believe that the disease you have is one and the same as the one presented at the Outbreak in London which Dr. Ramsay studied?

Simple answer is no if you are referring to the people who were involved in the outbreak at the Royal Free Hospital in London in 1955 - where Melvin was the attending physician

The outbreak is written up in considerable detail in Melvin's book (republished by the MEA) and it's clear that these people (mainly doctors and nurses) were very ill, with hard neurological signs including cranial nerve palsies, and were therefore admitted to hospital. The neuro symptoms and hard neuro signs seen in these doctors and nurses formed the basis for the introduction in the Lancet editorial covering the outbreak of the name myalgic encephalomyelitis

The vast majority of sporadic cases we see today do not have this type of clinical presentation

Melvin diagnosed my own ME and I was in regular contact with him till his death - if you read the book you will see that he makes a distinction between the clinical presentation seen in some of the early outbreaks with that of sporadic cases

 

[charles shepherd]

Obviously these findings would be consistent with 'encephalopathy', but aren't they more specifically consistent with 'encephalomyelitis'?

No - this type of low level neuroinflammation can be found in a number of non neurological disease.

It has even been suggested that it may play a role in depression.

Neuroinflammtion does NOT mean that someone has an encephalomyelitis but it does mean that the brain/central nervous system is involved

At the same time, the dorsal root ganglionitis we have found in several PM cases does not mean the spinal cord is inflamed as in encephalomyelitis.

The dorsal root ganglia form part of the peripheral nervous system.

 

[halcyon]

The vast majority of sporadic cases we see today do not have this type of clinical presentation

I agree, most people don't describe anything like what I read about in Ramsay's description of Royal Free. However, his description of endemic cases on page 29 of his book is spot on and still relevant today, and describes my onset to a T.

 

[Marky90]

Whilst you could say that there is some evidence for an autoimmune component to some cases of ME/CFS there isn't sufficient evidence to classify it as an autoimmune diseases.

I agree, and Fluge/Mella acknowledges so as well.. They say the findings might indicate a "variant of an autoimmune disease"..

 

[charles shepherd]

No - this type of low level neuroinflammation can be found in a number of non neurological disease.

It has even been suggested that it may play a role in depression.

Neuroinflammtion does NOT mean that someone has an encephalomyelitis but it does mean that the brain/central nervous system is involved

At the same time, the dorsal root ganglionitis we have found in several PM cases does not mean the spinal cord is inflamed as in encephalomyelitis.

The dorsal root ganglia form part of the peripheral nervous system.

Good review of neuroinflammation by Robert Dantzer who gave a keynote presentation to our Research Collaborative Conference in Bristol last year:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2919277/

 

[charles shepherd]

A small point but there's no implication in the name 'myalgic encephalopathy that the encephalopathy is causing the muscle pain. Myalgic is an adjective. The muscle pain is merely associated with the encephalopathy.

Correct!

 

[charles shepherd]

Obviously these findings would be consistent with 'encephalopathy', but aren't they more specifically consistent with 'encephalomyelitis'?

NO! Low level inflammation is NOT the same as having encephalomyelitis.

You can find it in a range of inflammatory and neuro diseases, possibly in depression as well

Have a look at the review I've just posted by Robert Danzer.

 

[charles shepherd]

I have wondered if we start with encephalomyelitis early on, but we aren't aware and it is not revealed, and it progresses (or decelerates?) to encephalopathy. Maybe it's how one defines inflammation. Brain markers for inflammation aren't that good, in general, and maybe nuanced inflammation flies under the radar?

Possible in some cases

My own illness was triggered by a chickenpox encephalitis (I had cerebellar involvement causing severe balance problems) but I don't believe I have an on-going encephalitis

 

[charles shepherd]

I agree, and Fluge/Mella acknowledges so as well.. They say the findings might indicate a "variant of an autoimmune disease"..

YES - That's another good way of describing what appears to be happening to the immune response in some cases

Overall, you can find low levels of some autoantibodies in some cases but there aren't the type of specific diagnostic autoantibody markers that you find in autoimmune conditions like SLE

 

[catly]

Benjamin Natelson, who has probably been one of the most prolific researches with publications on ME/CFs focusing on neurology/neuropsychology, believes there is evidence for encephalopathy or brain dysfunction in at least a subset of patients.

Odd how most of his research, largely funded by NIH, didn't make the AHRQ-P2P evidence review.

Whatever the cause, which I believe to be autoimmune in my case, most of my symptoms FEEL like they are neurological from the first minute I got sick.

 

[duncan]

@charles shepherd , don't you think whether one has encephalitis depends on what you're looking for, and how you define and measure encephalitis?

Would you consider any form of brain inflammation 'encephalitis', or would you qualify the type or scope of inflammation?

I would not have volunteered I had encephalitis vs. encephalopathy, but now that I think, about it, why not? Perhaps it really is a function of the metrics embraced, in large regard?

 

[halcyon]

NO! Low level inflammation is NOT the same as having encephalomyelitis.

I guess it would help to discuss specifically which studies you were referring to. I was thinking of the recent Japanese PET study that found evidence of diffuse brain inflammation, with a 45-199% increase of inflammatory markers versus healthy controls. Sadly they didn't test against depression patients as controls which would have been more interesting. They make no mention of "low level" in this study. Are there other studies that show signs of low level inflammation?

 

[leokitten]

YES - That's another good way of describing what appears to be happening to the immune response in some cases

Overall, you can find low levels of some autoantibodies in some cases but there aren't the type of specific diagnostic autoantibody markers that you find in autoimmune conditions like SLE

Then again from what I understand no one has ever looked that hard for new types of autoantibodies in ME/CFS, I think the jury is still out on this.

 

[charles shepherd]

@charles shepherd , don't you think whether one has encephalitis depends on what you're looking for, and how you define and measure encephalitis?

Would you consider any form of brain inflammation 'encephalitis', or would you qualify the type or scope of inflammation?

I would not have volunteered I had encephalitis vs. encephalopathy, but now that I think, about it, why not? Perhaps it really is a function of the metrics embraced, in large regard?

I would define (acute) encephalitis as a very serious, potentially fatal, rare neurological condition that involves significant inflammation of the brain.

These patients are often very ill and require hospital admission, often to an intensive care unit

This is not the normal clinical presentation that people describe in the acute stages of ME/CFS

Only a very tiny minority of people with very early ME/CFS will need admission to hospital

And a significant proportion of people with ME/CFS will predate the onset to a very minor viral infection - or no obvious infection at all

Again, this is not how encephalitis presents

 

[charles shepherd]

I guess it would help to discuss specifically which studies you were referring to. I was thinking of the recent Japanese PET study that found evidence of diffuse brain inflammation, with a 45-199% increase of inflammatory markers versus healthy controls. Sadly they didn't test against depression patients as controls which would have been more interesting. They make no mention of "low level" in this study. Are there other studies that show signs of low level inflammation?

I don't think anyone has replicated the results from Japan

'Low level' neuroinflammation is a term that I tend to use to describe this type of non encephalitis CNS inflammation

 

[charles shepherd]

Interesting to note that ME also stands for mild encephalitis:

https://books.google.co.uk/books?id...onepage&q=low level neuroinflammation&f=false

 

[duncan]

Encephalitis associated with ME/CFS need not be acute. In fact, I would imagine it would not be acute, but rather chronic and low grade - persistent but not obtrusive enough to be on conventional radar.

 

[charles shepherd]

Interesting to note that ME also stands for mild encephalitis:

https://books.google.co.uk/books?id=1pZwCAAAQBAJ&pg=PA87&lpg=PA87&dq=low level neuroinflammation&source=bl&ots=I44cPuKERx&sig=cjPvkFLdpA93-H46UUJPaleo2jk&hl=en&sa=X&ei=oiGXVbmUOoSL7AaJ2K-YAw&ved=0CGMQ6AEwCQ#v=onepage&q=low level neuroinflammation&f=false

The chapter in this book refers to low level neuroinflammation and ME/mild encephalitis in psychiatric disorders

 

[duncan]

It is of the same mold as the Dantzer study, then?