Suggested new name for ME/CFS

[Purple]

Since encephalopathy includes any disorder of the brain including those causing mental illness, I still prefer the more specific encephalitis -- inflammation of brain tissue. I think we have enough evidence for that. We don't yet have sufficient evidence for encephalomyelitis -- inflammation of myelin in the nervous system.

"myel" also refers to spinal cord, not just to myelin - http://medical-dictionary.thefreedictionary.com/myel-

 

[Purple]

4. Myalgic – advantage: symptom easily explicable by patient and observable in primary care.

"Myalgic" means muscle pain. Pain is subjective - therefore not observable in primary care.

 

[N.A.Wright]

"Myalgic" means muscle pain. Pain is subjective - therefore not observable in primary care.

Standard primary care physical examine includes palpation - may not be a quantification of pain but it is usually enough evidence for a sympathetic primary care doc to want to subsequently review or to refer for specialist assessment. Palpation can identify characteristics in the muscle - oedema, sponginess etc, so myalgia is one of the most accessible signs for ME/CFS in a primary care exam. Whether one would want it in the illness name is another question, but I'm not sure I can recall anyone writing on the forums (or any of the other patients I've met) saying that for them muscle pain isn't a feature of the illness.

For fibromyalgia there's something called the tender point test (palpation by another name), though I'm unclear how widely this is accepted as a valid examination tool.

 

[N.A.Wright]

Since encephalopathy includes any disorder of the brain including those causing mental illness, I still prefer the more specific encephalitis -- inflammation of brain tissue.

If the IOM is to consider it then the evidence needs to be published, peer reviewed and probably replicated. The Osaka City University study is promising but even that need not require actual inflamation of the brain, merely that the usual products of inflammation be present and caused by some as yet unexplained disease process. There's also the possibility that this small Japanese study has revealed something specific to a localised gene variant and replication needs to be done in diverse populations to address that along with the usual prcesses of replication.

Encephalopathy is a far easier characteristic to argue for, and tactically if the intent is to refocus away from 'fatigue' then something that has recognised implications for organic disease is a very useful option to consider. Certainly concern about 'association' with organicly mediated mental illhealth shouldn't be a concern - a brain disease is a brain disease whether Schizophrenia, Parkinson's or potentially ME/CFS (or what ever we want to call it).

 

[SOC]

If the IOM is to consider it then the evidence needs to be published, peer reviewed and probably replicated. The Osaka City University study is promising but even that need not require actual inflamation of the brain, merely that the usual products of inflammation be present and caused by some as yet unexplained disease process. There's also the possibility that this small Japanese study has revealed something specific to a localised gene variant and replication needs to be done in diverse populations to address that along with the usual prcesses of replication.

Encephalopathy is a far easier characteristic to argue for, and tactically if the intent is to refocus away from 'fatigue' then something that has recognised implications for organic disease is a very useful option to consider. Certainly concern about 'association' with organicly mediated mental illhealth shouldn't be a concern - a brain disease is a brain disease whether Schizophrenia, Parkinson's or potentially ME/CFS (or what ever we want to call it).

Agreed, if we're talking about the IOM changing the name. There is currently not enough published evidence even for encephalitis. If we're looking at published data for them to use, they're more likely to go with something general about the immune system than anything encephalo-.

I'm not expecting an official name change from IOM for just that reason -- there's not enough published evidence about etiology for them to be comfortable doing anything official. Maybe. You never know with these groups.

 

[N.A.Wright]

I'm not expecting an official name change from IOM for just that reason -- there's not enough published evidence about etiology for them to be comfortable doing anything official. Maybe. You never know with these groups.

The immediate issue is whether/how patients respond to the IOM's question about preference. It may be that a consensus on a logic based choice might have some long term influence, even if the IOM doesn't recommend change under the current state of knowledge. A final report saying - "patients want definition X because ........... " might bear fruit further down the line.

 

[Forbin]

It seems like the main objection to "Myalgic Encephalomyelitis" is that the "encephalomyelitis" is not what doctors and researchers traditionally think of as "encephalomyelitis." It would appear to be a more subtle, chronic and difficult to detect form of "encephalomyelitis." Speaking at the conclusion of the recent conference, Dr. Komaroff said:

"If it were confirmed by multiple other investigators it would, for me, say that there is a low-grade, chronic encephalitis in these patients, that the image we clinicians have of encephalitis as an acute and often dramatic clinical presentation that can even be fatal has – may have – blinded us to the possibility that there may be an entity of long-lasting – many years long – cyclic, chronic, neuro-inflammation and that that underlies the symptoms of this illness.”

So I began thinking about a word which would mean a "non-traditional," less "full blown" form of encephalomyelitis. I came up with:

Myalgic Paraencephalomyelitis​

[which could be abbreviated MP, MpE or MPE or could continue to be abbreviate ME.]

The Greek word "Para" means "close to" or "adjacent to" or "a version of" or "not quite, but similar." It shows up in a lot of words like "parallel," "paraphrase," "paramedic," and even "parathyroid". [It unfortunately also shows up in "paranoid" where it seems to literally mean something like "not quite one's self," but obviously this association isn't made with other words beginning with "para." My parathyroid glands do not have irrational suspicions.)

[The "para" prefix is not the same as the "pseudo" prefix, which means "false."]

I think this, or something like it, could help to get past the nomenclature objections of the traditionalists while still conveying that there is type of brain and spinal cord inflammation going on.


Just another idea....

 

[alex3619]

Reality may be on our side, but we also need to find a way to move the ball when it comes to perception. It took more than a decade before Marshall and Warren's findings on ulcers and H. pylori were fully recognized by the medical community - and they had a causative agent wriggling under a microscope.

According to my research it took 108 years. This was discovered in the nineteenth century, in Germany, published, then ignored until Barry Marshall, a hero of mine, rediscovered it and demonstrated it in a way the medical world could no longer ignore - though it was patients, not doctors, who forced the change. People like us.

http://forums.phoenixrising.me/index.php?entries/here-we-go-round-the-merry-go-round-part-one.1229/
http://forums.phoenixrising.me/index.php?entries/here-we-go-round-the-merry-go-round-part-two.1230/

I am now making parallels with CPET. A primary piece of ME pathophysiology has been measurable for 65 years, but I bet most doctors think there are no tests, even now seven years after the CPET findings were published. This is a reason for advocacy rage, and I am working on a blog called Reason for Rage.

 

[alex3619]

"Myalgic" means muscle pain. Pain is subjective - therefore not observable in primary care.

Some pain is measurable. We have the technology now. They just don't use it.

 

[WillowJ]

doesn't the periphereal neuropathy many of us have count as myelitis?

Regardless of whether ME is acceptable as far as accuracy, I agree with @Purple that other names are retained for historical reasons regardless of accuracy, so "we don't think it's accurate" is a lame excuse.

ME or Epidemic Neuromyasthenia or any of the other historical names should be used for now, particularly ME because it is coded in ICD.

ME/CFS is ok as a bridge (most of us are presently diagnosed with CFS), but CFS should cease use alone.