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

Discussion in 'Phoenix Rising Articles' started by persuasion, Nov 14, 2014.

  1. persuasion

    persuasion visitingmrssmith.com

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    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.


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    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




    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

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    Continue reading the Original Blog Post
     
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  2. Tired of being sick

    Tired of being sick Senior Member

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    More like the disease with a thousand faces........
     
  3. Thomas

    Thomas Senior Member

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    I like Ramsay's Disease as well. Although even Melvin Ramsay himself referred to ME as a "baffling syndrome". So round and round we go...
     
  4. alex3619

    alex3619 Senior Member

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    Lol, why not call it Baffles Doctors Syndrome? Or Doctors Baffled Syndrome?

    I think a new name is premature, and when we get a new name we may not have any say in the name. I wrote an old blog on this here:
    http://forums.phoenixrising.me/index.php?entries/musical-labels.1160/
    http://forums.phoenixrising.me/index.php?entries/musical-labels-part-two.1161/

    I would like to add to my blog comments and say that using ME does not lead to the same confusion with the general public as CFS, but it wont help with doctors.

    What matters is the research definition being used in studies. That is not about the name though, but the quality of the definition itself.
     
  5. Tired of being sick

    Tired of being sick Senior Member

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    A better way to describe the many faces of ME/CFS
    The disease with an astronomical multi personalty disorder......
     
  6. Snow Leopard

    Snow Leopard Hibernating

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    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).
     
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  7. cigana

    cigana Senior Member

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    Often people in the US think the name ME is better than CFS, but maybe they don't realize that in the UK the terms are more synonymous, and much of the negativity associated with CFS is also associated with the name ME. So changing to "ME" won't help much in the UK. We need to get away from any historical ties to move forward.
     
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  8. alex3619

    alex3619 Senior Member

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    It will change the reaction of most random people in the population. It will not change the reaction of most doctors, government officials etc., who are the people who really count. It might have some benefit to family members.

    Against this we have massive resistance to a name change. We have been trying to get the name changed for a long time now, and failed. The ICC is currently the best chance we have.

    In a few years it is likely that current research will discover, or confirm in some cases, major pathophysiology and maybe even the cause. Then the name will most likely change anyway. It might, for example, become Diffuse Limbic Encephalopathy. So we spend all that energy on advocacy and lose our new name even if we are successful, and the likelihood is that we will fail.

    Getting our researchers moving is a better target. Funding and political support for them is critical.

    Getting good definitions used in research is important. The name is secondary to this.

    Discrediting bad research, and claims made on that research, is important. Please be aware that since 1970 ME has been often considered synonymous with psychogenic. What we call the Wessely School has been pushing this since the 80s. If we get a name, any name, they will then work to rebrand it as psychogenic ... unless we have diagnostic tests, mechanisms etc from good science to fight them.

    The science is important, and hence the definitions. The politics is important, reason needs to prevail over rhetoric. The name would be nice, but it is also a wasted effort.

    If a name change comes it will most likely be from our scientists. If the biomedical researchers can advance enough, it will be from them. Otherwise we are facing either CFS or something just as bad or even worse from the psychobabble brigade.

    I really dislike CFS as a term. Its not just misleading, its seriously flawed in so many ways. Yet the term "CFS" is the wrong target for advocacy.

    Don't forget the logic of it. CFS and ME/CFS and CFS/ME are based on the idea that the disease subgroups are synonymous. With CFS in particular its highly problematic. I think it was about 1998 that Byron Hyde pointed out that many with ME don't even have chronic fatigue, yet the term CFS, which requires chronic fatigue to diagnose, is often considered synonymous with ME, even here in Australia.
     
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  9. Snow Leopard

    Snow Leopard Hibernating

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    Excellent point and it is one I haven't really heard before...
     
  10. Cheshire

    Cheshire Senior Member

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    Fibromyalgia sounds really more scientific than CFS, but that doesn't prevent doctors from thinking it's psychogenic.
     
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  11. meandthecat

    meandthecat Senior Member

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    'And how, some people may ask, can you have mild ‘extreme exhaustion’?'

    It goes so far beyond mild it's not even in the same universe. Mild is a word that describes tasteless cheese, is a Tiger ever mild, even if it is having a nap. It is not mild. Mild is a pint of warm beer that is not even bitter, this ravening monster tears and rends apart the very fabric of life itself.
    Words matter, even little ones like mild, because they convey the impression that we can reach a truce with this, an accommodation supported by a band-aid of psychostitious twaddle.

    rant over....anger is a gift
     
  12. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    "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 WHO discourages the use of eponyms:

    http://www.who.int/classifications/icd/revision/Content_Model_Reference_Guide.January_2011.pdf

    (Page 59)

    WHO, ICD-11 Content Model Reference Guide


    Use of Name of Noun formed after a person (eponyms)

    The naming of diseases after proper nouns or people (e.g. eponyms) are explicitly discouraged, except in historical cases where the eponym is already well-established (Alzheimer, Parkinson, etc.). However, eponyms can be entered into the tool as synonyms. Eponyms are used without the Genitive “’s”.

    ~~~~~~~~~~~~~~~~~~~~

    SNOMED CT


    http://www.isb.nhs.uk/documents/isb-0034/amd-26-2006/uktceditprinc.pdf

    Editorial principles for UK Edition of SNOMED CT

    5.1.5 Eponyms

    (Pages 19 and 20)
     
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  13. anniekim

    anniekim Senior Member

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    Regarding different levels of severity and the bit where it is written, 'Yet, evidently some sufferers of ME/CFS are not experiencing this major extreme exhaustion but have ‘mild’ fatigue' , in my first few years of ME I felt I had the same illness but my baseline was higher, so the time PEM kicked in was a lot later than it does now that I am bed ridden. It still felt the same dysfunction was happening but it was not so extreme as now. To me, the PEM has always been key, be it kicks in after a night out socialising or from brushing one's teeth. If someone only has mild fatigue and no obvious PEM then that to me seems something different. Just my take on it from my experience
     
    Last edited: Nov 16, 2014
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  14. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    I prefer Prolonged Recovery Asthenia Gravis, or PRAG. Prolonged recovery is the "pathognomonic" feature, also the sine qua non in the ICC. Asthenia is the proper medical term to describe the weakness or lack of strength. Gravis will tell you that it is a serious condition. The Latin words in this term also convey medical importance, unlike chronic fatigue syndrome. It's also not a mouthful like myalgic encephalomyelitis.
     
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  15. caledonia

    caledonia

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    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.
     
  16. Gingergrrl

    Gingergrrl Senior Member

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    I never use the term ME here in the US b/c literally no one outside of PR and the specialist doctors have ever heard of it.

    I also rarely use CFS b/c it has such a negative stigma and people assume it just means you are "tired."

    My elevator speech (to use Caledonia's term!) is that I had severe mono (which everyone understands) and that the virus re activated and has affected my autonomic system including my heart,BP, blood volume, etc. people always take it seriously b/c they can see how ill and impaired I am and a fraction of who I used to be.

    The exception are doctors who don't believe in re activation of EBV (viruses) or anything even remotely like CFS but those people are no longer my doctors!

    As far as the name, my CFS dr calls it "viral re-activation disease caused by immune system impairment." It's too long of a name to be official but I like the concept.

    I also like Ramsay's Disease.
     
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  17. persuasion

    persuasion visitingmrssmith.com

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    Love the 'elevator' explanation.

    To strangers and acquaintances, I pretend I'm well. To doctors I use the term ME (which I loathe saying to the point that if I have to see a consultant about another health concern and they ask: are you in good health? I'll say, yes just to avoid saying ME.)

    I have tried other things: 'I have an auto-immune disease'; 'I have health issues'; 'I have a heart complaint' (just for variety...). But if anyone then asks for more info I tend to say: 'ach, I hate talking about my health,' which tends to stop any further awkward questions.
     
  18. Valentijn

    Valentijn WE ARE KINA

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    Something related which I saw on a Simpson's rerun tonight: Homer was working as a food critic, but the boss isn't happy with some of his work and suggests other topics he could write about. She mentions "Chronic Fatigue Syndrome" as a topic, but the Dutch subtitle has it translated as "ME" :D
     
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  19. Sing

    Sing Senior Member

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    I really like Ramsay's Disease as a name. Both CFS and ME are terrible--equally bad in my view. ME unfortunately suggests a "me" focus, a neurotic syndrome for somatic complainers. I would like if it the name were changed once biomarkers were identified and a clear definition made. Only I have the feeling that even if some biomarker or two were agreed upon soon, there will be YEARS of learning new aspects of this disease. So many systems are affected, especially as it progresses over the years.
     
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  20. nasim marie jafry

    nasim marie jafry Senior Member

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    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
     

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