What Should This Disease Be Officially Called?

[Sidereal]

I think we should push for Ramsay's disease.

 

[KIO]

"Myalgic Encephalopathy" clinically, not describe the ME It it only creates a new disaster that leaves the understanding of ME:
I propose again: http://www.hfme.org/problemswithnamechange.htm

 

[beaker]

Maybe there's a good one in here :
The Disease of a Thousand Names: CFIDS--chronic fatigue/immune dysfunction syndrome 1991
by David S Bell

 

[jamie]

I read somewhere that other diseases have kept the same name after learning contradicting information to keep continuity and less confusion for old research. Should they change the name Malaria because they now know it's not caused by bad air?

ME has been used around the world for too long to change it even if they don't think it fits.

I say we just keep using it no matter what they say.

And I certainly didn't say to doctors as I was searching for answers that I need help for my exersion intolerance and unrefreshed sleep.

 

[KIO]

The Disease of a Thousand Names, Compiled by Melissa Kaplan: http://www.anapsid.org/cnd/diagnosis/names.html

Think CFIDS/FM/ME is a recent disease, cropping up suddenly in the 1980s? Think again. It has been described in the literature in accounts going back to the 1700s. There have been numerous clusters and epidemics around the world, including in the United States, this century alone.

The following descriptive names have been compiled from the work of Dr. Gordon Parish, Dr. David S. Bell, Dr. Henri Rubenstein, and Dr. Byron Hyde. The following represent just a few of the names that have been given to this protean illness.

Poliomyelitis Names
"Postpolio syndrome is considered by the medical community to be an indisputable entity. Unlike ME/CFS, there is no physician who doubts its existence. However, postpolio syndrome symptomology is identical to that of ME/CFS. The only difference is that, in postpolio syndrome, there is clear evidence of paralytic poliomyelitis in the patient concerned. Curiously, no note was ever made of postpolio syndrome except in the recent medical literature, despite the fact that poliomyelitis has been in existence as an epidemic disease since 1881 when the first epidemic of poliomyelitis occured in Sweden. The rise in postpolio syndrome closely parallels the increaing incidence of ME/CFS observed since 1979. It is our opionion at Nightengale [Foundation, Dr. Hyde's research and information organization in Canada] that postpolio syndrome is no more than ME/CFS (in an individual with previous history of clinical poliomyelitis)."

atypical poliomyelitis
abortive poliomyelitis
encephalitis stimulating poliomyelitis
encephalitis resembling poliomyelitis
postpolio syndrome
posterior poliomyelitis
sensory poliomyelitis

Names Based Upon Location

Iceland disease
Akureyi disease
Coventry disease
Tapanui flu
Otago mystery disease
Royal Free disease
Lake Tahoe mystery disease
Lyndonville chronic mononucleosis
English disease

Neuromyasthenia-related Names

neuromyasthenia
neurasthenia
epidemic neuromyasthenia
epidemic pseudo myasthenia
sporadic postinfectious neuromyasthenia
neurocirculatory asthenia

Myalgic Encephalomyelitis Names

myalgic encephalomyelitis
benign encephalomyelitis
benign myalgic encephalomyelitis
benign subactue encephalomyelitis
epidemic myalgic encephalomyelitis
epidemic encephalomyelopathy
acute infective encephalomyelitis
epidemic diencephalomyelitis
lymphoreticular encephalomyelopath

Myalgia-Type Names
The fibromyalgia names are based upon a symptom complex seen in ME, lupus, rheumatoid arthritis, and several other non-associated illnesses.)

epidemic malaise
persistent myalgia following sore throat
Damadian's ache
myofascial syndrome
muscular rheumatism
fibromyalgia syndrome
fibromyositis
fibrositis
epidemic myositis
lymphocytic meningo encephalitis with myalgia and rash
syndrome polyalgique idiopathique diffus (SPID)

Personal Names

Da Costa's Syndrome
Beard's Disease

Symptom-based Names

chronic fatigue syndrome (CFS)
la spasmophilie
Raggedy Ann syndrome
English sweats
effort syndrome
tetanie chronique idiopathique

Bacterial Names

chronic brucellosis
chronic Lyme disease

Combined Virus/Symptom Names

post-viral fatigue syndrome (PVFS)
persistent viral fatigue syndrome

Immune-based Names

chronic immune activation syndrome (CIAS)
chronic immune dysfunction syndrome (CIDS)
low natural killer cell syndrome
multiple chemical sensitivity sydnrom
ecological disease
allergic fatigue syndrome
antibody negative lupus
antibody netabive Lyme disease
chronic activate immune dysfunction syndrome (CAIDS)
chronic fatigue and immune dysfunction syndrome (CFIDS)
naxalone-reversible monocyte dysfunction syndrome (NRMDS)

Epstein-Barr Virus-based Names
(Keep in mind that EBV and mononeucleosis has now been discarded as the cause of CFS/ME. Not only is the virus prevalent in the non-CFS/ME population, not all CFS/ME patients show positive titres to EBV.)

chronic Epstein-Barr virus syndrome (CEBV)
chronic active Epstein-Barr virus infection (CAEBV)
chronic mononeucleosis
familial chronic mononeucleosis
chronic infectious mononeucleosis
chronic active Epstein-Barr virus infection
chronic mononeucleosis-like syndrome

Hypothalamic Names

epidemic vegetative neuritis
neurocirculatory asthenia
vasoregulatory asthenia
vasomotor instability
vasomotor neurosis
habitual chronic hyperventilation syndrome

The "Atypical" Names

atypical multiple sclerosis
atypical migraine

Miscellaneous Names

soldier's heart
epidemic vasculitis syndrome

Media Names

yuppie flu
yuppie plague



When I was going from doctor to doctor, seeking to find out just what was wrong with me (fevers, chronically feeling chilled to the point of shivering on warm Summer nights, swollen glands in throat and armpits, fatigue, brainfog, memory problems, head-to-toe pain, eye problems and more), I saw an infectious diseases doctor at UCLA, referred to me by the endocrinologist I saw there. Turns out she was a specialist in tropical diseases but agreed to do some blood tests to see what turned up, especially given my recent background in working with wildlife and having spent a year in Israel (albeit more than a decade previous to that time). What I now know to be typical abnormalities were found (weird SED rate, abnormal liver function), but what didn't hit me until I was typing up this list was that of all the zoonotic diseases she tested me for (including Q fever, toxoplasmosis, Rocky Mountain spotted fever, etc.) the only one that came up positive was canine brucellosis. I joked about getting "kennel cough" from my dog who caught it when he was hospitalized for hip surgery. Now, it's not so funny...

"​

 

[Sidereal]

I read somewhere that other diseases have kept the same name after learning contradicting information to keep continuity and less confusion for old research. Should they change the name Malaria because they now know it's not caused by bad air?

Well, there is a huge difference between myalgic encephalomyelitis and malaria. Encephalomyelitis is a specific pathology for which evidence in ME/CFS/SEID is lacking whereas malaria doesn't refer to any specific incorrect pathophysiology, it's just a word that means nothing derived from Italian for bad air.

 

[KIO]

I read somewhere that other diseases have kept the same name after learning contradicting information to keep continuity and less confusion for old research. Should they change the name Malaria because they now know it's not caused by bad air?

ME has been used around the world for too long to change it even if they don't think it fits.

I say we just keep using it no matter what they say.

Yessss!

 

[KIO]

Well, there is a huge difference between myalgic encephalomyelitis and malaria. Encephalomyelitis is a specific pathology for which evidence in ME/CFS/SEID is lacking whereas malaria doesn't refer to any specific incorrect pathophysiology, it's just a word that means nothing derived from Italian for bad air.

The problem that I see. If you do not make so many problems to keep the name "malaria" Now they know the cause, because they have to do so be squeamish with ME, which is already well described?
I see in so much bad will.

There are lots of diseases that have "unknown cause" and are not "well understood". Yet they have a right to a decent name.

 

[taniaaust1]

How about Mirza's disease? (Sophia Mirza)

I like this idea thou I dont know how that is said...

 

[taniaaust1]

When I wrote my blog on the IOM report, here is a list of alternative names that I sort of made up off the top of my head. But if anyone likes any of them, they could be included.


>So perhaps we should be considering something like Ramsay’s Disease. Or BCP – Bell Cheney Peterson Disease. Or Florence Nightingale Disease. Or Sophie Mirza Disease. Or Vanessa Li Disease. Or Laura Hillenbrand Disease. Or Royal Free Disease. Or Lake Tahoe Disease.

Most of those are too long for me to like. I really hope people consider the severe subgroup who have trouble writing and will be trying to write a name with shaking or weak or painful hands/wrists.

If we have to change the ME name, I really hope they keep it short.
I like "Tahoe Disease" too, it would help people be more aware this disease appears in outbreaks... and if one looks up TD, there are no other diseases with that abbrev.

If we have to put something with that new crappy definition I dont want ME to be assoc at all with which only would confuse things further, my first choice would be Tahoe Disease. (then hopefully they can fix the definition later).

 

[taniaaust1]

The concept of Mirza is admirable, but it sounds a lot like MRSA super bug. That could prove a problem.

agree with this post now that I think about it along those lines.. maybe not a so good name after all

 

[taniaaust1]

Our best chance may be to make the new name as close as possible to "Systemic Exertion Intolerance Disease," but have it sound like a real disease (finally). These are four possibilities:

Systemic Exertional Neuroimmune Disease

Multisystemic Exertional Neuroimmune Disease

Systemic Exertional Neuroinflammatory Disease

Multisystemic Exertional Neuroinflammatory Disease

OMG .. imagine those writing that on a form or having to reply and say all that on a day when someone asks what the initials of your disease stands for when one can hardly speak and is slurring words. (Ive been ill for 18 years now and still cant say either of the ME names cause they are long and hard to say).

If you have ever had a lot of trouble writing or speaking, you would understand what a nightmare names that long can be.

I really really hope people consider the severe group, they do not need a long name to be trying to deal with if the name is changed. You could well be sicker one day and be struggling to say those long names being suggested now.

 

[KIO]

Because patients M. E. want to change a name that already exists, for me remains a mystery.

Need a name, just one, short, precise, unambiguous.
If you incoming in the emergency room and I feel bad of not being able to talk and think, I can not hold a conference to medical triage, to explain that I have a disease called ME, but was incorrectly defined CFS, that even if he believes is not psychiatric, and is now called SEID, or something else ... and it will not even my husband. : D
I already happened that the triage doctor asked me to explain what is Myalgic Ecephalomyelitis ... aaargh! I made great confusion, and he however believed everything ... Maybe I have said right things ...
But if the emergency doctor looking on the internet or in PubMed MUST find a single thing! Not only chaos and the same disease described with 20 different names, which, however, will not know and will not try!

 

[Nielk]

Well, there is a huge difference between myalgic encephalomyelitis and malaria. Encephalomyelitis is a specific pathology for which evidence in ME/CFS/SEID is lacking whereas malaria doesn't refer to any specific incorrect pathophysiology, it's just a word that means nothing derived from Italian for bad air.

It is interesting to note that the ME-ICC in 2011 adopted in consensus the name Myalgic encephalomyelitis based on the published research they had at the time. Bateman and Klimas were members of the ICC and now the IOM four years later. There is more current evidence to uphold the name Myalgic encephalomyelitis. It is purely a political decision to do away with the name M.E.

 

[KIO]

(...)Bateman and Klimas were members of the ICC and now the IOM four years later. There is more current evidence to uphold the name Myalgic encephalomyelitis.

It is purely a political decision to do away with the name M.E.

I noticed too.
Exactly! and it is exactly what we have to avoid it happening!

 

[Sidereal]

It is interesting to note that the ME-ICC in 2011 adopted in consensus the name Myalgic encephalomyelitis based on the published research they had at the time. Bateman and Klimas were members of the ICC and now the IOM four years later. There is more current evidence to uphold the name Myalgic encephalomyelitis. It is purely a political decision to do away with the name M.E.

Can you cite any studies showing the presence of encephalomyelitis (I don't mean inflammation; I mean encephalomyelitis specifically) in ME patients? If such evidence were available, surely the disease would be treated seriously and taught in every medical school and textbook.

 

[KIO]

Sidereal,
But the WHO called her so, according to the findings of the autopsy, and the evidence ... no?

 

[Nielk]

Can you cite any studies showing the presence of encephalomyelitis (I don't mean inflammation; I mean encephalomyelitis specifically) in ME patients? If such evidence were available, surely the disease would treated seriously and taught in every medical school and textbook.

http://phoenixrising.me/archives/24936

http://www.webmd.com/chronic-fatigu...ot-possible-clues-to-chronic-fatigue-syndrome

http://www.meresearch.org.uk/news/inflammation-brain/

http://www.meresearch.org.uk/news/widespread-neuroinflammation/

http://www.meresearch.org.uk/news/brain-abnormalities-in-mecfs/

 

[beaker]

OMG .. imagine those writing that on a form or having to reply and say all that on a day when someone asks what the initials of your disease stands for when one can hardly speak and is slurring words. (Ive been ill for 18 years now and still cant say either of the ME names cause they are long and hard to say).

If you have ever had a lot of trouble writing or speaking, you would understand what a nightmare names that long can be.

I really really hope people consider the severe group, they do not need a long name to be trying to deal with if the name is changed. You could well be sicker one day and be struggling to say those long names being suggested now.

If you have trouble now w/ that or in the future. Why not have it pre written and copied out on pieces of paper. you need to fill it in. attach the copy or ask the person at the desk to attach it. I do that w/ my med list. I can't fill those out all the time so I have copies and attach them to forms. Just thought that might help you out .
I also used to have business cards w/ CFIDS on them and a little explanation/definition. They were from the CAA and although I no longer support the organization it was a great idea ( they stopped making them anyways ) Whatever this ends up w/ I hope someone does that again or maybe I'll do my own !

 

[Sidereal]

http://phoenixrising.me/archives/24936

http://www.webmd.com/chronic-fatigu...ot-possible-clues-to-chronic-fatigue-syndrome

http://www.meresearch.org.uk/news/inflammation-brain/

http://www.meresearch.org.uk/news/widespread-neuroinflammation/

http://www.meresearch.org.uk/news/brain-abnormalities-in-mecfs/

Thank you for the links, @Nielk. The two studies discussed in those articles do not show encephalomyelitis. I don't want to repeat myself as I've already posted on this topic in great detail elsewhere so I'll just leave it at that.