Spinney Lainey
Senior Member
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People are talking about getting NK cell tests - how did you get these and how are you treating this?
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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It was not renamed to ME/CFS, but most of us with CFS prefer to call it M.E. (Myalgic Encephalomyelitis).
CFS is the U.S. name for it, and M.E. is used in the U.K. and other places.
I think of ME/CFS as meaning patients that have M.E. and those who have a less serious form, CFS. Not that they are suffering less but where they don't meet the criteria for full M.E. (and I believe they are very lucky because they have more chance of recovery).
The upcoming documentary Canary in a Coal Mine (which raised $200K recently) hopes to help change the name to M.E., and is saying "formerly known as Chronic Fatigue Syndrome". But no matter what we call it, the U.S. government may not change it.
Experts are trying to help change the completely misguided direction of the government. I think it will take a long time.
CMI sounds better than CFS to me!
In UK it is also called CFS but patients prefer to call it the old name - M.E because CFS trivialises it. What criteria need to be met in order to have M.E??
Can we see the documentary you're talking about anywhere? Not sure if M.E is a better name - as it doesn't really describe our illness accurately. It means inflammation of the brain stem, which as far as I know, is not what it's about and has been disproven as a symptom..............
I agree! At least it acknowledges that it is a multi-system illness!!
that's chronic multi-symptom illness.
As in, this patient has lots of symptoms and no one knows why. Probably emotional.
CMI is a psychiatric disorder. Does that sound better?
In UK it is also called CFS but patients prefer to call it the old name - M.E because CFS trivialises it. What criteria need to be met in order to have M.E??
Yeah, the definition would be just as bad, probably worse, with a lot of wink-winking by various therapists and medical professionals every time they mention it.that's chronic multi-symptom illness.
As in, this patient has lots of symptoms and no one knows why. Probably emotional.
BMSS = Broken Medical System Syndrome
Perhaps I have BMSS or Broken Medical System Syndrome. It is an exclusionary diagnosis. If you have a Doctor and a patient in a room together and after hearing the patient speak the Doctor rolls his eyes to heaven FOLLOWED by the BMSS patient rolling his eyes within seconds.....then you might have BMSS.
You might have BMSS if you all your medical test come back normal and you look normal but feel like you are dying.....you might have BMSS.
that's chronic multi-symptom illness.
As in, this patient has lots of symptoms and no one knows why. Probably emotional.
One day I'm hoping ME will have a completely different legitimising new name and formerly be known has ME/CFS in history. Dreams are free it might come true!
that's chronic multi-symptom illness.
As in, this patient has lots of symptoms and no one knows why. Probably emotional.
I see your question wasnt answered. In australia some of us got nk function testing through a reseach study done through bond/griffith university who are researching cfs/me.People are talking about getting NK cell tests - how did you get these and how are you treating this?