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A disease with two faces? Re-naming ME/CFS

persuasion submitted a new blog post:

A disease with two faces? Re-naming ME/CFS

Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...

If there is one thing that is sure to get ME/CFS sufferers riled up, it is the name of our disease.

The very fact that two names are attached to each other, janus-like, almost as if mocking one another seems emblematic of all the controversy surrounding the illness.




If only we could just sort out the name, perhaps everything else would fall into place.

For how can anyone trust a condition with such a slippery, inconclusive title?

Dr. Derek Enlander suggested that we could re-name the illness 'Ramsay's disease' in the grand tradition of calling diseases after the people who first documented them.

The advantage of this is that we get rid of the 'two conditions in one' label which is confusing for both sufferers and anyone trying to understand the illness.'Ramsay's disease' sounds as if it belongs to the canon of other serious illnesses.It would move our illness away from the realm of a syndrome (who takes a syndrome seriously?) and give it some respectability.

And this would have an impact on the everyday life of the sufferer. The term 'ME/CFS' is so polluted, so discredited, that we might feel less embarrassed, less stigmatised to tell people we had 'Ramsay's disease.'

Dr. Enlander mooted that semantics were not as important as diagnosis and treatments and of course he is right; but still, the words that are used to describe something remain extremely important for the people to whom they apply as they construct and define our reality.This is why language that has been used against certain other discriminated and marginalised groups has been hotly disputed over the years, changed, outlawed and sometimes re-appropriated by the groups in question.

Words and language are symbols. They are the building blocks of a society, they not only reflect, they perpetuate and create.

But would a change of name really solve anything?

The problem with the ME/CFS label is that no one knows within that entity to whom one is referring.

Some sufferers say that ME is the only 'real' condition. That CFS is the milder version or ME Lite or even something completely different. This might be an affront to many but it is an argument raging in our community.

Again the name creates tension and resentments and, worse, uncertainty and disbelief both within and outside the ME world.

Others feel that ME/CFS are the same entity – so why have both? Can't we just plump for the one?

People who were diagnosed in the early to late 1980's were labelled with neither.

In the UK we had PVS (post-viral fatigue syndrome) and in the US, CFIDS was popular (chronic fatigue immune dysfunction syndrome).

Were these labels any better that what we have now?

Possibly. PVS did describe something of what was happening in that most people started off with a virus and never recovered. The problem was that what we were experiencing was not 'fatigue' in any previously known sense of the word.

The extreme exhaustion after the most minimal effort was entirely new and out of the ordinary.

CFIDS also was good in one way because something, surely, had happened to our immune system – even if there were no longer traces of it that could be picked up by a blood test. But again, it didn't quite describe for sure what the illness was.

Then these two vintage labels slowly but surely – and most often without our permission – transmogrified in our medical notes into the dreaded ME/CFS.

The main point of contention for sufferers however is that the label ME/CFS – and calling the disease by another name cannot help with this – contains disparate illness groups within it.

Who knows who is suffering what? Again, often bitter argument arises over this issue.

The term 'chronic fatigue' is offensive to many for the reason previously stated: the extreme and abnormal exhaustion one feels with this illness is so out of this world, so unrelated to any condition one might have experienced before, that to describe it as fatigue is an insult.

'Chronic fatigue' diminishes and therefore undermines the credibility of the serious nature of the disease.

Yet, evidently some sufferers of ME/CFS are not experiencing this major extreme exhaustion but have 'mild' fatigue.

And others are given the same label and are bedridden for fifteen years unable to read, watch TV, speak, feed themselves or go to the bathroom.

Yes, other conditions such as MS have patients with widely differing symptoms but they know what their disease is. The varying severity of MS sufferers is to do with how far the disease has progressed and if they have the remitting or aggressive form.

With ME/CFS – though sufferers are tormented with many other symptoms – the core and most disabling symptom is the extreme exhaustion. And how, some people may ask, can you have mild 'extreme exhaustion'?

I think we all know now that doctors are using the ME/CFS label for anyone with any kind of persistent fatigue which further dilutes the medical and public perception of our disease.

This is serious. Having a nebulous, untrusted, untrustworthy name has a solid impact on research.

And without research we can expect no progress with either diagnostic techniques or treatments.

And without a diagnostic test to separate who is suffering from what, we are trapped with the incongruent name that serves us ill.

And not even 'Ramsay's disease' can solve this for us.

For further reading:

See the author’s blog: http://visitingmrssmith.com




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Continue reading the Original Blog Post
 
I like Ramsay's Disease a lot, and who cares if WHO frowns upon eponyms. Do they also frown upon prejudicial and highly misleading names? What I like about "Ramsay's" is that I wouldn't feel a need to explain anything unless anyone asked, and it doesn't exactly invite that in the way that a medical term does. Most of all, I like that it would allow me to keep a certain distance from being a "sick category" person and has a certain mystery about it. Those who are interested in learning more will ask or find another way of learning about it and those who aren't will accept it as a real condition all the same.
 
persuasion submitted a new blog post:

Maybe you might want to learn about ME before you start blogging on the topic.

ME as a diagnosis was "alive and well" as a diagnosis in the 80's. There are still many patients from that time with an original pre-CFS diagnosis like myself still here. There are still patients from the Royal Free outbreak around.

We had NHS and private doctors with an interest in the disease and access to some early treatments (like Amantadine). There was a VP1 test for entroviral infection through the NHS.

I was a lot better off as an NHS patient in the 80's than I am now.
 
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Hold off on any name 'label' changes first find cause(s) then name it, could be possible this illness is linked to numerous others only manifesting differently in genetic factors cfs is very close to M.S. as well all these illnesses could be linked caused by infection trigger or multiple don't go with old school researchers even though they documented so much best to go with people who find cause or a treatment that works let's see how Dr. Coimbra's work from Sao Palo Brazil pans out in auto immune conditions if he is right calling these 'partial vitamin D deficiencies' he with his team including Dr. Michael Hollick would deserve name recognitions :) Merry Xmas
 
I like Ramsay's Disease a lot, and who cares if WHO frowns upon eponyms. Do they also frown upon prejudicial and highly misleading names? What I like about "Ramsay's" is that I wouldn't feel a need to explain anything unless anyone asked, and it doesn't exactly invite that in the way that a medical term does. Most of all, I like that it would allow me to keep a certain distance from being a "sick category" person and has a certain mystery about it. Those who are interested in learning more will ask or find another way of learning about it and those who aren't will accept it as a real condition all the same.

I agree. Ramsay's Disease doesn't have the word 'fatigue' in it, which must be good. The label, 'ME' is so stigmatised it's painful to use.
 
Unfortunately, I am a reluctant expert on ME since I've had it severely for 27 years.

But you're right, I think ME was in usage in some parts of the UK and but perhaps not in all. I was diagnosed in the late 80s and it wasn't used for me nor anyone I knew. Perhaps it was a regional thing? I don't suppose it matters. The point remains the same. The label CFS is insulting. And the term 'ME' stinks so foul it's embarrassing to use.

I don't feel I was better off in the 80s. The stigma and lack of acceptance and utter uselessness of the medical profession and false dawns on treatments are identical. Perhaps I am a tiny bit more hopeful that immuno-suppressants (used for so many other, often less disabling diseases) might come into play for us. But I'm not holding my breath.
 
Maybe you might want to learn about ME before you start blogging on the topic.

ME as a diagnosis was "alive and well" as a diagnosis in the 80's. There are still many patients from that time with an original pre-CFS diagnosis like myself still here. There are still patients from the Royal Free outbreak around.

We had NHS and private doctors with an interest in the disease and access to some early treatments (like Amantadine). There was a VP1 test for entroviral infection through the NHS.

I was a lot better off as an NHS patient in the 80's than I am now.
See reply above.
 
Hi there, You say that: 'Others feel that ME/CFS are the same entity – so why have both? Can’t we just plump for the one? People who were diagnosed in the early to late 1980′s were labelled with neither'. This is not true, I was diagnosed in Scotland/UK with myalgic encephalomyelitis in Jan 1984, I had never heard of it, I had become ill with Coxsackie B4 virus in autumn 1982. Peter Behan was doing lots of work with ME patients, and he wrote the foreword to Melvin Ramsay's book in 1987. You are right though to say post viral syndrome was also used though in UK, and in my medical notes I also have seen 'severe post viral syndrome' mentioned from back then. I would be very happy for Ramsay's Disease to be the new name. But post exertional malaise has to be a defining symptom, not just 'fatigue'. As far as term CFS goes, that was not used in UK until late 80s/early 90s, brought over from USA by Wessely and co. So many ME sufferers were then being labelled as CFS, and vice versa. Because of shifting criteria (Oxford) you could now be labelled as ME when you did not even have PEM. Ludicrous situation! I never refer to my illness as CFS as I honestly do not know what CFS is. I do however know what ME is. Great forum, by the way, I have not visited for a long time! Nasim Marie Jafry, author of The State of Me
You may be right - I think it was a regional thing. I was diagnosed in the 80s also but in London and I never heard the term ME until quite a few years later and I knew a lot of sufferers. It doesn't really matter now. ME has been contaminated. It's partly the fault of it being bound with CFS, but whether on its own or with CFS, it's not a name I ever feel comfortable using.
 
My typical elevator speech is that I have a disease similar to MS, called ME. This goes over well with (US) people. They get right away that it's serious and that's generally all they need or want to know.

However, when I mentioned I had ME to a couple from London I ran into, I got strange pitying looks.

Technically, if we can get the CCC adopted, we will have the name ME/CFS, as that's what's used in that document. In the even newer ICC definition, CFS has been dropped and ME is used. So that's what the majority of our doctors and researchers have already agreed on.

I don't see them changing the name any more than that, unless a biomarker is found. Then the name would be based on the biomarker. That's how MS got their name changed from hysterical paralysis to multiple sclerosis.
I have to revise my previous comment. New information has come to light and things are moving rapidly. Starting Oct. 1, 2015 the ICD-10-CM goes into effect. At this time ME will have it's own diagnostic code as a neurological disease (G93.3) separate from CFS. CFS and ME will be mutually exclusive - if you have one, you can't have the other.

MEadvocacy.org has hired a public relations firm to help get ME officially recognized as a distinct disease (separate from CFS), along with a true ME definition (CCC, ICC or better), and then greatly increased funding for federal research.

There is no such thing as ME/CFS or Ramsay's disease, CFIDS or whatever. There is only ME and CFS.

Please read the blog post: http://www.meadvocacy.org/if_you_mean_m_e_just_say_m_e
 
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I have to revise my previous comment. New information has come to light and things are moving rapidly. Starting Oct. 1, 2015 the ICD-10-CM goes into effect. At this time ME will have it's own diagnostic code as a neurological disease (G93.3) separate from CFS. CFS and ME will be mutually exclusive - if you have one, you can't have the other.

MEadvocacy.org has hired a public relations firm to help get ME officially recognized as a distinct disease (separate from CFS), along with a true ME definition (CCC, ICC or better), and then greatly increased funding for federal research.

There is no such thing as ME/CFS or Ramsay's disease, CFIDS or whatever. There is only ME and CFS.

Please read the blog post: http://www.meadvocacy.org/if_you_mean_m_e_just_say_m_e


And what happens with the IDC10-CM and insurance codes if the IOM report gives us a different name?
 
Looks like cfs is 2015 ICD-9-CM Diagnosis Code 780.71 (sounds familiar - I think that's what it currently is)
  • "ICD-9-CM 780.71 will be replaced by an equivalent ICD-10-CM code (or codes) when the United States transitions from ICD-9-CM to ICD-10-CM on October 1, 2015."
http://www.icd9data.com/2015/Volume1/780-799/780-789/780/780.71.htm
Thanks Denise. It looks like CFS will be replaced with "chronic fatigue, unspecified" (R53.82).
ICD-9-CM 780.71 converts directly to:
 
I don't think the name will change to anything good till we have a biomarker or cause. If anyone comes up with a new name that sticks without having a biomarker or cause it will be tainted within a year. Zero gain. The science will have to come first for a new name to have real value. At that point it will be the experts who give it to us, although it would be nice if we could be consulted for a change.
 
Yes, changing the name will make a difference. When telling people I have "Ramsay's Disease", I could then say "its complicated" instead of explaining it. Whereas if I tell someone I have CFS, they already think they are an expert (not really, but you know what I mean).

I found that telling people I have a medical condition is much much easier. For the most part, most don't want to know the details anyways.
 
Smart, Mij. Preserves dignity, too. Alex3619, you were exactly right. And what if it turns out there is no single cause, but a gradual overwhelm and then sudden breakdown of the immune system?