I don't understand this part, is it name suggestions?NEI - neurology, endocrinology, immunology once offered
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I don't understand this part, is it name suggestions?NEI - neurology, endocrinology, immunology once offered
I've long thought it should just be called what it is:
Chronic Neuro-Immune Dysfunction
I mean, it's not glamourous, but it tells it like it is, most people can understand what it means, and it prohibits "helpful" commentaries like "my cousin got cured by exercising more."
Alternatively, one could get rid of the "chronic"--which scares most doctors away--and call it
Neuro-Immune Inflammatory Disorder or something.
I think that we should just call it the MTD - Meetoo Disease. Because, every time we say that we are always exhausted; the reply is "me too".
Until we have a biomarker they agree on to use for diagnosis then whatever you call it will get twisted into dam yuppie flu. Aarrgghh!
I have body-wide inflammation, including my brain and likely my spinal cord as well. Autopsies have also shown similar problems. So I'm not sure why anyone really gives a damn if it's 100% accurate and 100% the best name for it. It works well enough, and it would remarkably stupid to invent a new name and confuse the public in areas where ME is already fairly well-known.ME means that our symptoms is caused by an inflammation of the brain and spinal cord, don't you think that's misleading?
What about the 1/2 to 2/3 of the patients who didn't have inlammation in the brain, how do you explain that?In 2005, James Baraniuk et al. published an article in BMC Neurology titled:
A Chronic Fatigue Syndrome Related Proteome In Human Cerebrospinal Fluid
http://www.biomedcentral.com/1471-2377/5/22
On 4/24/2010, noted CFS researcher Anthony Komaroff summarized the findings of that paper before the Massachusetts CFIDS Association, saying:
“A whole group of proteins, in the brain, were found in 1/3 to 1/2 of patients with Chronic Fatigue Syndrome vs. none of the patients who were healthy - highly significant differences, statistically. And what those molecules - and others that I haven’t shown you for lack of space - say is that there is a low-grade inflammation going on in the brain. There is something in the brain that the immune system doesn’t like, doesn’t want to be there, it wants to get rid of, and that’s being reflected in these proteins in the spinal fluid.”
What about the 1/2 to 2/3 of the patients who didn't have inlammation in the brain, how do you explain that?
I'm sorry but I don't understand what you mean, could you please be more clear and specific.I'm not sure why this matters to you Sammy1. Why ask your question in that way.
CFS is a diverse population. Personally I wouldn't expect to see the same %. No one is doing research on a strictly ME population any longer so we are left without data.
the others found with no inflammation could come down to the diagnostic criteria ie they dont have cfs/me but some other illness. The problem with cfs/me diagnostic criteria is that they are far from perfect which is why its important to find a biological marker. If a 1/3 of people diagnosed with cfs/me dont actually have the illness then this explains why many treatments dont have a higher sucess rate. So if a treatment has a 66% success rate then its probably on the money but their criteria for diagnosing cfs/me is not accurate??What about the 1/2 to 2/3 of the patients who didn't have inlammation in the brain, how do you explain that?