What's in a name? Change to Ramsays?

Sly Saint

Sly Saint

Senior Member (Voting Rights)
From me-pedia:
"The advantages of using the term, "Ramsay's Disease," is that as science discovers more about the pathophysiology of the disease, the name would not have to change. Currently, the many changes in the name of the illness has interfered with an accurate literature search for research, as well as, the education of physicians and the public, and contributed to frustration in the patient community."
"
http://me-pedia.org/wiki/Ramsay's_Disease

WHOs guidelines re NEW names.........not sure if it applies to changing existing ones, then there is also the 'infectious' issue.

"Among the existing monikers that its new guidelines “for the Naming of New Human Infectious Diseases” would discourage: Ebola, swine flu, Rift Valley Fever, Creutzfeldt-Jakob disease, and monkey pox. Instead, WHO says researchers, health officials, and journalists should use more neutral, generic terms, such as severe respiratory disease or novel neurologic syndrome."

http://www.sciencemag.org/news/2015/05/discovered-disease-who-has-new-rules-avoiding-offensive-names

"“In recent years, several new human infectious diseases have emerged. The use of names such as ‘swine flu’ and ‘Middle East Respiratory Syndrome’ has had unintended negative impacts by stigmatizing certain communities or economic sectors,” says Dr Keiji Fukuda, Assistant Director-General for Health Security, WHO. "
http://www.who.int/mediacentre/news/notes/2015/naming-new-diseases/en/

on a side note but of importance is the psychosocial crew are already 'renaming/redefining'
see https://dxrevisionwatch.com/category/bodily-distress-syndrome-2/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5032513/
 
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SEID was only supposed to be a temporary name until we could label accurately based on evidence. Currently the states are left with CFS or CFS/ME. Much of Europe is left with CFS and uk CFS, MUS or FND. The issues with CFS was the fact it's vagueness was designed to leave it open to psychological explanations, it puts fatigue as focus and is exceedingly vulnerable to the reduced CF. Both in UK & USA we haven't succeeded in getting any form of ME accepted, nor in the uk is there a movement to get one. I personally think it was a missed opportunity not to ride on the wave of the IOM report and embrace the temporary Name SEID , which sounds more serious, physical and gets PEM as the focus. I was reading about Unusual mitochondrial myopathies and repeatedly the symptom of exercise intolerance, along with fatigue and pain was mention in the review paper , so I see nothing harmful in the EI part of the name. The fact it spells dies backwards is as irrelevant as AIDS spelling SDIA backwards.
 
Cinders66 said:
SEID was only supposed to be a temporary name until we could label accurately based on evidence. Currently the states are left with CFS or CFS/ME. Much of Europe is left with CFS and uk CFS, MUS or FND. The issues with CFS was the fact it's vagueness was designed to leave it open to psychological explanations, it puts fatigue as focus and is exceedingly vulnerable to the reduced CF. Both in UK & USA we haven't succeeded in getting any form of ME accepted, nor in the uk is there a movement to get one. I personally think it was a missed opportunity not to ride on the wave of the IOM report and embrace the temporary Name SEID , which sounds more serious, physical and gets PEM as the focus. I was reading about Unusual mitochondrial myopathies and repeatedly the symptom of exercise intolerance, along with fatigue and pain was mention in the review paper , so I see nothing harmful in the EI part of the name. The fact it spells dies backwards is as irrelevant as AIDS spelling SDIA backwards.
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Yes I always thought the fact that SEID spelt dies backwards was completely irrelevant.

I thought that ME/SEID to replace ME/CFS would be a way to go. We could see which would survive.
 
WHat I understand is that the use of scientist or person name for disease have been abandon, why they would not consider Ramsey as a name. I forgot why this is the case or where I read it becuase that was my preference back in the day too.
 
Seems to me the name used most frequently about 10-15 years ago in the USA was CFIDS (for Chronic Fatigue and Immune Dysfunction Syndrome). I always thought they could take the 'F', and then we'd have Chronic Immune Dysfunction Syndrome, which IMO wouldn't be too bad. Or at least not nearly as bad...
 
Liv aka Mrs Sowester said:
I expect that when we finally find out what is driving our illness a suitable name will present itself.
In the meantime it's just a minefield - in fact this is the first discussion of the name I've seen that hasn't turned into an argument! Names are hard.
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I have been doing a lot of reading on this and the conclusion I have come to is largely one of representation/association. By that I mean that initially M.E. (or CFIDS in the US) were associated with biological origin/ physical disease not just by patients but by researchers at the time.

CFS was then introduced and associated with the psychosocial/psychological origins ,psychs,insurance companies etc. This has continued, but even some of the most devoted researchers of M.E. had problems with the name and suggested tweaking it (eg encephalopathy) or created their own subtypes, and then those who prefered the CFS moniker started doing the same to fit with their own interpretations.

But for at least the last 10/15 years people have been being diagnosed with CFS, as M.E (and CFIDS) were rarely used for diagnosis. Most of these patients accepted the name without any knowledge of the 'conflict'.

Although the 'conflict' still continues even those who are considered staunch believers in one name over the other have conceded.
"
At The Nightingale Research Foundation in Ottawa, Canada, we have stuck with the name Myalgic Encephalomyelitis because there have been at least 10 names used in the literature since we started looking at this disease process in 1984 and we are simply tired of trying to keep up with the name changes. We have also tried to avoid the term "fatigue". Fatigue is immeasurable and largely indefinable."

It is interesting that over the last few years M.E. as a name is seeing a bit of a resurgence as the 'BPS takeover' becomes more widely exposed, largely IMO down to this issue of association (as well as dislike for the name CFS for obvious reasons).

Contrary to what people have posted above, the WHOs guidelines are just that, and not enforceable:

"Of course, since they are just best practices, there's no guarantee anyone will adhere strictly to these new guidelines. For Ian Lipkin, an epidemiologist at Columbia University, new disease names need to be first and foremost informative."

"The International Committee on Taxonomy of Viruses has final say when classifying a new disease, but often a colloquial name spreads so quickly, the committee is left with few choices, which is what happened with swine flu."

https://motherboard.vice.com/en_us/article/qkvamm/how-to-name-a-disease
 
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That tweet by Colby is good evidence for the proposition that complex matters cannot usefully be considered on twitter.

The name should be used how? According to the original criteria? As a synonym for CFS under one of its sets of criteria, and if so which?
What is to become of those with a current diagnosis excluded by the new name?

It would add a whole new layer of confusion if Ramsay's disease were not synonymous with the Ramsay criteria for ME.
 
I've been through this many times before on other platforms:


WHO/ICD-11 position on use of eponyms:


ICD-11 Content Model Reference Guide:

http://www.who.int/classifications/icd/revision/Content_Model_Reference_Guide.January_2011.pdf

(...)

Page 59

"Use of Name of Noun formed after a person (eponyms)

The naming of diseases after proper nouns or people (e.g. eponyms) are explicitly discouraged, except in historical cases where the eponym is already well-established (Alzheimer, Parkinson, etc.). However, eponyms can be entered into the tool as synonyms. Eponyms are used without the Genitive “’s”.

Use of acronyms

An acronym is an abbreviation formed from the first letters of other words and pronounced as a word (e.g. NASA). Acronyms may never be used for titles of categories. They should be added as synonyms to the appropriate spelt out disease entity thus facilitating identification of the relevant cases and categories."
 
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