Name change for CFS?!

[Spinney Lainey]

This name still infuriates me and doesn't help convince the general public that this is a serious health condition!

So apparently it was changed to ME/CFS! What a joke!

Is there any chance we can get a proper name? Are there any more campaigns happening?!

 

[minkeygirl]

No

 

[alex3619]

There is the IOM (Institute of Medicine contract for HHS) attempt. They will most likely give us an even worse name than CFS. They did that with Gulf War Syndrome, called it Chronic Multisystem Illness, CMI. They have also stated that CFS is a form of CMI.

Welcome to our new name if we don't stop them: Chronic Multisystem Illness. Oh, and its probably psychiatric, not biomedical. If so then medical insurance will be limited in range, capped, and doctors wont be able to do tests or much treatment.

The IOM has to be stopped, and if that fails, we need to publicly reject them, discredit their report, and question inherent bias in the IOM itself.

 

[SickOfSickness]

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!

 

[heapsreal]

cfs and ME a re basically the same illness, debatable i know but thats how it is, criterias are different so cfs seems to catch a few more people then a strick ME diagnosis. The problem is at the moment is most of the research in the last 30 years relates to cfs not ME. If we dropped the cfs part alot of research would be missed by many docs and researchers especially the knew guys coming in. Hopefully within the next 20yrs cfs/me is recognised as a real illness and then we drop the cfs part.

Personally i like neuro immune illness.

 

[GracieJ]

I quit telling people I have CFS. They then see THEIR filter/definition and would totally dismiss me.

I say I have a neuro immune disorder.... voila, I have had more support, help, recognition, and empathy than ever before as various obvious symptoms surface.

The name war may never really end, as people will forever insist " you were never really sick anyway" and other equally silly comments.

 

[heapsreal]

i tell people i have an immune disorder and if they ask more i tell them my nk cells dont work, lymphoctes are high and neutrophils are.

I saw another doc a few months back as i needed a script for abx for sinus issue. This was a new doc from a run of the mill medical centre near home. He asked me what my medical history was, i said cfs and then said before u right me off as a psycho i have had nk cells testsed, neutrophils etc etc bla bla and all i want is abx for sinusitis. He actually sat back and is eyes changed from rolling back, this guy is a crazy one to, mm maybe this guy does have real medical issues. Quickly mentioned the uni thats doing all the research, got my script and left.

I made him think about it twice, maybe he might have looked up the research being done, maybe gave him something to think about??

cheers!!

 

[SickOfSickness]

The downside is, if they believe we are ill, people may think we are contagious.

In one thread a member here had a woman disbelieving her, but the woman was saying don't come near my kids, because fear of her being contagious. Just one more way we can be mistreated.

I feel the word "immune" makes us sound more contagious, but I like how "neuro immune" sounds serious.

 

[Seven7]

I tell some Drs I have natural killer cell disfunction (google it, they know about this one) and dysautonomia. So far I get treated seriously. I carry all my inmune tests on my purse!

 

[SickOfSickness]

I tell some Drs I have natural killer cell disfunction (google it, they know about this one) and dysautonomia. So far I get treated seriously. I carry all my inmune tests on my purse!

Wish I had an NK Cell test result. Maybe I'll pursue it.

 

[Seven7]

Well I am not being very successful raising my NK cells numbers, My activity is raising to normal levels.

 

[alex3619]

Well I am not being very successful raising my NK cells numbers, My activity is raising to normal levels.

Activity is probably more important than numbers.

 

[WillowJ]

another meaning for ME/CFS is that patients who have ME are diagnosed with CFS (as doctors aren't taught any better). In countries where the name of ME is not generally known, new patients will not be able to find the more experienced patients, if the experienced patients drop CFS altogether while patients are still being diagnosed with that. ME/CFS is a temporary and imperfect solution to this problem.

Of course we have problems with criteria, too (none of the CFS criteria defines any particular condition), and we need to fix both the criteria and the name, as soon as we can possibly manage it.

 

[Forbin]

In scenarios where I use ME/CFS, I have taken to writing it ME/"CFS."

In my mind, the quotes around "CFS" suggests that the term is nothing more than imprecise slang - which, I think, it is.

 

[Xandoff]

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.

 

[Antares in NYC]

When all is said and done, and if we ever get the research money to look into what's messing us up, this will be a neuro-immune disease. The more I read about the disease, the more I notice certain patterns of this illness in me, the more convinced I am that this is a neuro-immune disorder caused by a "hit and run" pathogen (or combination of pathogens). For whatever reason, there's a combination of circumstances during that initial flu-like onset that leaves your immune system in disarray.

Just today I was reading an article about a new study in the UK that saw remarkably similar patterns between ME/CFS and MS: http://www.biomedcentral.com/1741-7015/11/205

Nobody tells people suffering from multiple sclerosis that it's "all in their head", and we need to get to a point where the overall public takes ME/CFS as seriously as MS. I guess once we get more definite diagnostics methods, things will change a little. I also hope the "CFS" term would go away, frankly.

When I have to explain my ordeal to anyone, these days I tell them I have a neuro-immune disorder called M.E., and proceed to explain to them how serious it is. I also explain that in the 80s the CDC arrogantly dismissed it and called it "CFS", but that's a misnomer that doesn't do justice to such an awful illness. Not only I'm telling people about my ordeal, but I feel like I'm doing my part by educating them and explaining the seriousness of this disease.

And let me tell you, you should have seen the face of my primary care doctor, the same one that for a decade said "it was all in my head" and kept prescribing me antidepressants like candy, when I went back to him with a M.E. diagnosis, and my lab test showing alarmingly low NK1 cell numbers, and impaired NK function. For the first time he was both shocked and embarrassed, instead of arrogant and dismissive. He was left almost stuttering, and at the end of our meeting told me to follow up with my immunologist, as he wouldn't know how to treat me.

I almost told him "hey, aren't you gonna give me some Zoloft or Paxil to cure this thing?"... But I bit my tongue. I'm too polite, actually.

 

[alex3619]

MS patients were told it was all in their head, and even locked up in asylums, for decades to who knows how long. With modern diagnostic testing that all changed, even if their testing is not definitive. What changed is how doctors perceived it.

Poor NK cell function, loss of bright cells, and the 2 day CPET are our best tests that I am aware of.

 

[Spinney Lainey]

CMI sounds better than CFS to me!

I agree! At least it acknowledges that it is a multi-system illness!!

 

[WillowJ]

that's chronic multi-symptom illness.

As in, this patient has lots of symptoms and no one knows why. Probably emotional.

 

[Spinney Lainey]

Yes, I like 'neuro-immune disease'. Might start changing what I call my illness when people ask. I feel so uncomfortable calling it CFS and if I say ME - people ask what it stands for - and well that's a can of worms!!