Name change for CFS?!

[Spinney Lainey]

People are talking about getting NK cell tests - how did you get these and how are you treating this?

 

[Spinney Lainey]

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..............

 

[SickOfSickness]

Like Forbin I like to use quotes around CFS, but I don't want to make it look confusing so I write ME/CFS.

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..............

There are different definitions and criteria. This article lists some definitions and history: http://phoenixrising.me/research-2/defining-chronic-fatigue-syndrome-mecfs

The documentary trailer and info are on here: http://www.kickstarter.com/projects/959776320/canary-in-a-coal-mine
They have a facebook page too.

I agree with you about M.E. being wrong, but it is still better.

 

[alex3619]

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

CMI is a psychiatric disorder. Does that sound better?

that's chronic multi-symptom illness.

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

@WillowJ is correct, I misstated. Its chronic multisymptom illness. A synonym for somatization, bodily distress disorder, neurasthenia and hysteria. GWI and CFS and many others may all be considered CMI. This is how the existing IOM reports consider it, but the dedicated IOM report for CFS and ME is currently under way.

So its somewhat likely that will be the new name, backed by the US government. All without evidence, confirmatory studies etc. Indeed its impossible to find objective evidence of such diagnoses, because there IS no objective evidence for any psychogenic disorder.

 

[SickOfSickness]

CMI is a psychiatric disorder. Does that sound better?

Ok, it's horrible. But the name itself sounds serious.

 

[SickOfSickness]

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??

I read more. In summary: The Canadian criteria is well liked. The ICC from 2009 are not used much yet. The Fukuda criteria from 1994 is used in research.

The criteria are detailed, but you have to have PENE (PEM) for most criteria and more of the common symptoms.

 

[Valentijn]

that's chronic multi-symptom illness.

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

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.

But for the basic name and public impression, it sounds better than "chronic fatigue syndrome" at least. Which is why they probably won't change the name - it's already about as crappy as they can make it.

 

[heapsreal]

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.

SO the treatment for BMSS is for the doctor to do graded exercise, once he recovers he will be able to see that his patients are sick

 

[allyb]

that's chronic multi-symptom illness.

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

How patronising........chronic multi-symptom illness = sounds like someone with a bad case of hypochondria

 

[aimossy]

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!

 

[alex3619]

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!

I think its inevitable, what I don't know is when it will happen. Most don't realize that ME is probably more tainted than CFS in the minds of most doctors. The whole CFS debacle started as ME was almost universally considered mass hysteria due to some papers starting in 1970 that convinced the medical world ME was hysteria. Yet they saw no patients, looked at only a few files from the Royal Free Hospital outbreak, and used nonscientific methods. Hysteria has no objective marker, and probably is a non-disease/disorder/illness.

 

[SickOfSickness]

I fear it is 10, 20 years off. I would be amazed and delighted to have it happen in 5.

Agreeing on a new name could be a part of the problem.

More so, the experts and advocates are too busy fighting for funding, the big issue about government trying to change the definition, and helping some of us one by one. The name fight is given less importance.

 

[taniaaust1]

that's chronic multi-symptom illness.

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

CMS would be a bad thing for us..as after all it already has the recommendation on it which has been given to the gulf war patients that CBT is the treatment for it .. and its been basically put down to psych causes.

It would also be as bad as suddenly renaming our illness somatism.

"chronic muti-symptom illness"

Thou some are thinking that would be great people wont be just thinking "fatigue" .. one has to also consider by "multi-symptom".. the idea of fatigue, depression, anxiety, insomina could just be put out with it (oh that person must have tiredness, depression and anxiety" ie a multi symptom mental health disorder. A name change as such wouldnt at all recognise that we have other serious symptoms at all too but could put across as a somatizing disorder.

neuro-endocrine illness is far better. We dont need to be labeled with another crappy name which we may end up regreting for decades. We deserve to have a decent name to this illness. Cancer isnt called "eatting away at you syndrome".. so why should anyone want us to be called CMS

 

[Elph68]

If we start calling it a chronic mucousal infection, which is what it is ..... then we will start getting medical people to do their friggen job ...

 

[alex3619]

Names don't matter much. ME is tainted. Change the name to whatever you want and the spin machine will taint that too. We have to tackle the source of the problem, and its not the name. The name does mis-communicate to the general public, and medical professionals do take the term ME more seriously, but as soon as they scratch a little deeper they come up the widespread unsubstantiated claims that ME is CFS, and that both ME and CFS are psychogenic disorders. Even if they don't believe that they often then conclude its a wastebasket diagnosis of no great value, substance or validity.

We need to identify the biomedical mechanisms and then name it, and use the hard data to quell any opposition. However its the scientists who will probably name it, not us.

However as a part of advocacy we need to use the term ME as much as possible, and CFS or ME/CFS as little as possible.

So the clinical diagnosis, what name we choose, is a quagmire. The research definition is however much more important. Currently the two to use are the CCC and the ICC. We need to focus on discrediting the other definitions as they select research cohorts that too heterogeneous.

 

[heapsreal]

People are talking about getting NK cell tests - how did you get these and how are you treating this?

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.

In the states people get the nk function testing through a few places, drs klimas, peterson others may jump in with labs in the US that do this resting.

Redlabs in europe may also do nk function testing?

As to treating it well we try with immune mods like inosine. Immunovir. Cycloferon. But nk testing could turn out to just be a diagnostic marker and raising nk function may not be a cure,although improving nk function may help??

 

[alex3619]

http://forums.phoenixrising.me/inde...euroimmunology-emerging-diseases-opens.26780/

Griffith University is today opening the new research center. It will eventually (not sure when) have a clinic attached to it. Please read the thread I linked to if you are interested. This will be of greatest use to locals (South East Queensland, Australia) but it depends how far you have to travel. I think North America or Europe would be a little far though.

This clinic will very probably offer state of the art NK cell testing. There are no proven treatments though, only experimental ones that some people respond to and others don't.

 

[WillowJ]

OFFER will be having a workshop on "The Future of CFS and FM: Research, Case Definitions and Advocacy and Politics."
http://www.offerutah.org/educationmtgschedule.html

I wonder if they will touch on the name at all?

 

[Spinney Lainey]

This'll make you guys laugh (or scream!) I just had my first assessment at King's College Hospital chronic fatigue unit and in the waiting room was a questionnaire explaining that they were thinking of giving an umbrella term to all the illnesses like CFS and IBS that had symptoms with no known specific cause.

I really wish I'd brought one home because I can't remember all the potential names but they were things like:

Unknown Medical Symptoms
Somatoform Disorder
Bodily Distress Disorder

Plus a whole list of other abomimations!

Obviously, I told them where to stick it saying that the name CFS as it is, trivialises the condition and that these are by far worse. I said we would like a name that acknowledges the immune, neurological, skeletal, muscular, endocrine and adrenal symptoms and that I preffered 'neuro-immune disease'.