Notice about a forthcoming paper: A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma

[Sasha]

This is the sort of thing the crowd usually seems to decide, even when there are efforts to the contrary.

We've gotta get in there fast, then! We must prepare to be the crowd!

 

[Eleanor]

Gamma Interferon Regulated Disorder of Excitatory Receptors Syndrome. To be treated by drinking Irn-Bru.

 

[Jonathan Edwards]

I think LMT disease has to be preferred but how about:

Gamma interferon mediated neural activation syndrome.
Or, as above, Gamma interferon mediated nociceptor activation syndrome

 

[Utsikt]

I think LMT disease has to be preferred but how about:

Gamma interferon mediated neural activation syndrome.

GIMNAS sounds like gimnasio which is a gym in Spanish. Ironic name

 

[Utsikt]

LMT - it’s elementary!

 

[Yann04]

GIMNAS sounds like gimnasio which is a gym in Spanish. Ironic name

It is also pronounced pretty much the same as “gymnase” in French which means gym(nasium) as well.

 

[Jonathan Edwards]

You could just have IMNAS or PIMNA - persistent interferon mediated nociceptor activation.

 

[Sasha]

GIMNAS sounds like gimnasio which is a gym in Spanish. Ironic name

It is also pronounced pretty much the same as “gymnase” in French which means gym(nasium) as well.

This naming business is a lot harder than you'd think!

This is what WHO says about naming new diseases:

Diseases are often given common names by people outside of the scientific community. Once disease names are established in common usage through the Internet and social media, they are difficult to change, even if an inappropriate name is being used. Therefore, it is important that whoever first reports on a newly identified human disease uses an appropriate name that is scientifically sound and socially acceptable.

The best practices apply to new infections, syndromes, and diseases that have never been recognized or reported before in humans, that have potential public health impact, and for which there is no disease name in common usage. They do not apply to disease names that are already established.

The best practices state that a disease name should consist of generic descriptive terms, based on the symptoms that the disease causes (e.g. respiratory disease, neurologic syndrome, watery diarrhoea) and more specific descriptive terms when robust information is available on how the disease manifests, who it affects, its severity or seasonality (e.g. progressive, juvenile, severe, winter). If the pathogen that causes the disease is known, it should be part of the disease name (e.g. coronavirus, influenza virus, salmonella).

Terms that should be avoided in disease names include geographic locations (e.g. Middle East Respiratory Syndrome, Spanish Flu, Rift Valley fever), people’s names (e.g. Creutzfeldt-Jakob disease, Chagas disease), species of animal or food (e.g. swine flu, bird flu, monkey pox), cultural, population, industry or occupational references (e.g. legionnaires), and terms that incite undue fear (e.g. unknown, fatal, epidemic).

WHO developed the best practices for naming new human infectious diseases in close collaboration with the World Organisation for Animal Health (OIE) and the Food and Agriculture Organization of the United Nations (FAO), and in consultation with experts leading the International Classification of Diseases (ICD).

The new best practices do not replace the existing ICD system, but rather provide an interim solution prior to the assignment of a final ICD disease name. As these best practices only apply to disease names for common usage, they also do not affect the work of existing international authoritative bodies responsible for scientific taxonomy and nomenclature of microorganisms.

Notes to editors
The final name of any new human disease is assigned by the International Classification of Diseases (ICD), which is managed by WHO.​

 

[Sasha]

You could just have IMNAS or PIMNA - persistent interferon mediated nociceptor activation.

According to Google Translate, 'pimna' means 'drunk' in Bulgarian. Mysteriously, 'imnas' means 'imnas' in Ilocano.

 

[Yann04]

According to Google Translate, 'pimna' means 'drunk' in Bulgarian.

Probably still more accurate a name than “CFS”. I feel more drunk than tired with PEM.

 

[hotblack]

I'd prefer something that could also be written as, say [insert initial of favourite psychobehaviouralist] Is A Dolt.

Milligan’s Disease as in ‘I told you I was ill”

Probably still more accurate a name than “CFS”. I feel more drunk than tired with PEM.

(Ford) "you'd better be prepared for the jump into hyperspace. It's unpleasantly like being drunk."
(Arthur) "What's so unpleasant about being drunk?"
(Ford) "Ask a glass of water."

 

[Jonathan Edwards]

This is what WHO says about naming new diseases:

I haven't seen such a load of politically correct garbage in a long time.

For a start we are looking for the name of a causal process now, not a clinical picture. The clinical picture can go on being ME/CFS. We want to name the cause of that.

 

[Sasha]

I haven't seen such a load of politically correct garbage in a long time.

We could have done with being named after somebody all these long years instead of being stuck with an incorrect biomedical name and a name meant as a stick to beat us with.

For a start we are looking for the name of a causal process now, not a clinical picture. The clinical picture can go on being ME/CFS. We want to name the cause of that.

But when can we get rid of 'ME/CFS'? It's all kinds of awful (see above).

 

[Yann04]

But when can we get rid of 'ME/CFS'? It's all kinds of awful (see above).

I have a feeling it might stick around. Maybe not, who knows. In any case, if we’ve got an effective treatment and are being taken care of seriously, then I think we won’t care as much as we do now.

 

[jaded]

You could just have IMNAS or PIMNA - persistent interferon mediated nociceptor activation.

This may be a silly question but if nociceptors are activated in ME why are there some people that experience little pain?

Pain is a massive part of my illness including head to toe burning neuropathic pain which has spread but I’m often quite astounded that some pwME only have this as a minor feature.

I appreciate there are different types of small fibre sensory nerves and upregulated ion channels as a result of cytokines like interferon. I just wonder where the patient variability of symptom expression comes into play?

 

[Jonathan Edwards]

This may be a silly question but if nociceptors are activated in ME why are there some people that experience little pain?

I am assuming that nerves that mediate all sorts of nasty feelings are 'nociceptors' but people might have genetic differences in which nerve types are most susceptible to the problem maybe.

 

[JemPD]

Probably still more accurate a name than “CFS”. I feel more drunk than tired with PEM.

yes

 

[Sasha]

This may be a silly question but if nociceptors are activated in ME why are there some people that experience little pain?

Pain is a massive part of my illness including head to toe burning neuropathic pain which has spread but I’m often quite astounded that some pwME only have this as a minor feature.

I'm really sorry to hear that. Apart from migraines sometimes, I have not just little pain, but zero pain and have always counted myself very fortunate.

 

[hotblack]

I don't pretend to provide a clear answer to this but the answer may lie more in the set up than in anything specific going wrong. That would link to genetic risk.

Excellent thank you.

I can cope with probabilities, greys rather than black and whites. Combinations of complex interactions shifting this or that way. It seems to be how so much in the world works.

You’ve often talked about this idea so it makes sense to have it explored more mechanistically. Looking at which finely balanced mechanism may have had a cog spun a little faster or a leg kicked out from under it.

I suppose it’s the shifts or setup I’m also wondering about. What is it that means this happens in some people and not others? What are the factors that influence this? Is there a difference in a receptor or an antibody or indeed the interplay of multiple factors? The idea of this allowing people to have had different thresholds and different triggers appeals to me.

Looking forward to reading more and hopefully we’ll unravel things in the coming months.

 

[Robert 1973]

You could just have IMNAS or PIMNA - persistent interferon mediated nociceptor activation.

Should it not be disease now instead of syndrome?