Namechange 2009

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callow

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To my knowledge forces in the circle of De Meirleir or collaborating with him, propose a namechange from CFS to GIN, gastrointestinal neurotoxic syndrome.

This is important news and display what weight some put on the role of gut in this illness.
 

JanisB

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If you think people laugh about chronic FATIGUE syndrome, imagine what they will do with GIN!
He won't get anywhere. He hasn't proved that H2S is the etiology, just that it is present and correlates with severity.
 

Cort

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interesting! It perhaps suggests that he's further along than we think. He's got a lot of publishing to do before he can do that - got to rigorously delimit the GIN group - but it would be great if he really had a handle on this. DR. Mikovits at WPI did say her tests indicated that his set of patients was a coherent group - a real subset.

There certainly seems to be a subset of emerging at WPI. Maybe one at De Meirleir????? Only time will tell. :)
 

Jody

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Most people I know aren't familiar with this illness by ANY name.

Was thinking the other day, I could use any name I want to make up for it, the few times people show any interest in the fact that I have been chronically ill for years. No matter what I call it people just aren't interested in chronic invisible illnesses.

I don't think a name change would make much difference. Finding answers is what will make a difference.
 

Tony

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Name changes will make a lot of difference really. The subsets need to be clarified and then named. Lumping us all together is unhelpful to researchers, doctors and patients alike. It's probably why there are conflicting studies looking at the same things. It hampers everyone when some have high viral loads, some don't, some have MCS, some gut dysbiosis, some not, yet somehow we all have the same illness? I don't believe so.
If one is GIN syndrome so be it. At least then it may fall to gastroenterologists and neurologists to take this group seriously.
 

dannybex

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Gin...

It didn't hit me until Janis' and Terri's replies...GIN...or GAS...lol.

Reminds me of an old mad magazine 'Snappy Answers to Stupid Questions' cartoon, where a guy pulls up to a gas station and asks the attendant:

"You got gas?"

Attendant replies: "Well, I used to but now I take Alka-Selzter."

RIM-SHOT!

Seriously, if they need to use the word syndrome, which many docs suggest is appropriate (since there are so many different symptoms, subgroups, etc), then I've always leaned toward CIDS -- Chronic Immune Dysfunction Syndrome, leaving out that "F" word.

???
 

heapsreal

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new name

bad energy encounter recuring
I have beer:D

I think ME describes it best, inflammation of brain spinal cord and muscles. Alot of us have back problems and i wonder if its this inflammation of the spinal cord. Just recently read about the english girl sophia merza who died of ME. her original autopsy showed nothing, then with permission of her parents and the courts an ME expert requested to examine her spinal cord. He found profound inflammation of the spinal cord and nerves that were consistent with herpees viruses like shingles, ebv etc. This is how her cause of death was changed to ME
http://www.youtube.com/watch?v=7mZMpvtD3rg

I do believe there are sub sets of cfs and ME is one of them.
 

LaurelB

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I like CIDS too, but how would it be pronounced? Either with a hard c, which would sound like we are saying "I have kids," or with a soft c, which would sound like we are saying we have SIDS (sudden infant death syndrome). I like ME best too, though that is still not taken very seriously in England (much thanks to the Simon W. group). I think we really need a major breakthrough in science to move us forward. Of course, part of the conundrum is that with such a silly name, not as many researchers are as interested as they might otherwise be.
 
S

Solon

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I think that describing such a complex disease as myalgic encephalomyelitis or chronic fatigue syndrome is degrading for us patients by far. Myalgic (greek for muscle pain) and enchephalomyelitis (also greek for brain/spinal cord inflammation) is far from what is really happening in cases of CFS. What about liver and spleen inflammation or intestinal inflammation observed, or cardiac arrhythmias or all sorts of endocrine manifestations?? All those have to be packed into a well defined onomatology heavy enough to shock the ignorants like this disease has been shocking us over the years.


XAND is good. X-associated neuroimmune disorder. Or it could be ANID (acquired neuro immune disorder) but resembles AIDS too much hmm, dont know yet but this name has to definately change.
 
C

cold_taste_of_tears

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XAND is good. ;)

I'm using it the second I've had 2 positive blood tests.

Currently I get told I've got Chronic Fatigue, (doctors simply cannot be bothered to even complete the sentance).
 

starryeyes

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I want to call it XAND too if I test positive to either test. But I want it pronounced "Ex-AND" not "zand" which to me sounds wimpy and new-ageish.

"Ex-AND" sounds like "quicksand" which is what it feels like we're all drowning in.
 
A

anne

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It makes sense, really. Because you'll have X, and a lowered immune system, and EBV/HHV-6/CMV, and....
 

lostinthedesert

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I want to call it XAND too if I test positive to either test. But I want it pronounced "Ex-AND" not "zand" which to me sounds wimpy and new-ageish.

"Ex-AND" sounds like "quicksand" which is what it feels like we're all drowning in.
Yup "EX-AND" is how I see it too.
 

Frickly

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I think that describing such a complex disease as myalgic encephalomyelitis or chronic fatigue syndrome is degrading for us patients by far. Myalgic (greek for muscle pain) and enchephalomyelitis (also greek for brain/spinal cord inflammation) is far from what is really happening in cases of CFS. What about liver and spleen inflammation or intestinal inflammation observed, or cardiac arrhythmias or all sorts of endocrine manifestations?? All those have to be packed into a well defined onomatology heavy enough to shock the ignorants like this disease has been shocking us over the years.


XAND is good. X-associated neuroimmune disorder. Or it could be ANID (acquired neuro immune disorder) but resembles AIDS too much hmm, dont know yet but this name has to definately change.
I vote for X-associated neuroimmune disorder. I think we should have a poll and vote on it. Then we can send it to "the powers that be.."
 
Whatever name emerges, I pray it does not have the word 'syndrome' in it. A syndrome is only a simple way to refer to a collection of symptoms.

I would like any new name to reflect the etiology of this illness, not the myriad ways it is expressed on any given day in divers individuals. That is only apropos I think, for such a devastating illness.

Yes, I would like it if the name included a reference to XMRV.
 

kamina

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I want to call it XAND too if I test positive to either test. But I want it pronounced "Ex-AND" not "zand" which to me sounds wimpy and new-ageish.

"Ex-AND" sounds like "quicksand" which is what it feels like we're all drowning in.
I prefer to say it like you would with HIV by pronouncing each letter (H-I-V). X-A-N-D sounds the best imo.