Recently the whole name change issue for ME/CFS came up again, which it does periodically. This is my view on the subject, presented as some loosely connected ramblings. I really don’t want to spend time, money or energy on this subject; that is no more than for writing this article.
Which name?
The discontent with the name and the different angles of research led, over time, to a whole set of different names for this one disease or range of more or less similar diseases: Chronic Fatigue Syndrome (CFS), Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS, popular in USA), Myalgic Encephalomyelitis or Myalgic Encephalopathy (ME), Post Viral Fatigue Syndrome (PVFS), Gulf War Syndrome, Fibromyalgia (FM), Low Natural Killer Syndrome (Japan), X Associated Neuro-immune Disease (XAND), … Do we really need an extra name for this disease? Or will we choose an existing one? If so, which one? What if we can’t agree? Suppose the USA chooses a different name than the EU, what then?
Combine the different names with the dozen or so sets of diagnostic criteria for ME and CFS and it creates a lot of confusion. Don’t be surprised to find a lot of smoke and mirrors stuff when trying to understand what’s it all about.
Name change
The probably most commonly used name — Chronic Fatigue Syndrome or CFS — doesn’t even begin to describe the symptoms of this disease and the impact it has on patient’s lives.
Some of the symptoms: chronic fatigue, post-exertional malaise even after a mild activity, disturbed and/or unrefreshening sleep, myofascial pain, impaired memory, slowness of thought, difficulty comprehending information, muscle twitches, sensitivity to bright lights or noise, irritable bowel syndrome, sweating episodes, recurrent flu-like symptoms, … The severity can range from almost having a normal life, with resting becoming your major pass time, to being completely bedridden.
The logic behind a name change seems reasonable, but is it worth the trouble?
Disease versus Syndrome
According to the Medical Dictionary a syndrome is:
/syn·drome/ (sin´drōm) a set of symptoms occurring together; the sum of signs of any morbid state;
There is no doubt in my mind that this is a physical disease, but symptoms are what connect us, so for the naming a syndrome is more correct than a disease or disorder. Maybe it would have been better if Keiji Fukuda had given his name to the syndrome instead of the criteria. The Fukuda Syndrome sounds a lot more serious than Chronic Fatigue Syndrome. It also sounds like the title for a B-movie.
Who, or is it WHO, gets to decide?
Who gets to decide on a name change for a disease anyway? Patients or patients’ organizations? Don’t think so. Normally it’s the prerogative of the researcher who first describes it, which would be difficult in this case. Maybe we can organize a vote. It works for the Diagnostic and Statistical Manual of Mental Disorders (DSM), but I don’t think we should follow their example.
Whoever gets to decide must have the authority so that all governments, public health administrations, international health organizations and health insurance companies will accept the name change and definition.
The World Health Organization has the authority, but will they do it and how long will it take?
Broken Links
If a totally new name gets chosen, this will lead to a lot of trouble. The new name will need to be introduced, but the old names will have to keep on being mentioned to maintain the link with the whole body of research that exists today. This will make it harder for researchers and for patients to find relevant information. Don’t forget that a lot of biomedical research papers, like the initial paper on XMRV in Science by the Whittemore Peterson Institute for Neuro Immune Disease, only mention CFS.
ME/CFS
The Campaign For A Fair Name chooses ME/CFS and has some good arguments for their choice. I didn’t even know there was a campaign for a name change until I did some research for this article. I have been using ME/CFS ever since I joined the international ME/CFS community a good year ago. I just thought ME/CFS was a clever way combining the two most used acronyms uniting patients and providing a link to the research on both.
ME is not CFS
This is a very bad attitude which I encountered again recently while doing research for another article on the site of the Hummingbirds’ Foundation for M.E. I have seen much worse statements from patients and organizations; “CFS isn’t real”, “CFS is for fakers”, … The only way I can politely describe this is infighting.
Patients don’t get to choose the name for their disease; in some countries it is ME, in others it is CFS, and in some countries you don’t get diagnosed at all. You cannot start blaming or excluding fellow patients based on a label.
In my own country I have seen statements like the ones above made by patients, and yet I have never heard of any patient who got officially diagnosed (and received disability) with ME. We only have psychosocial CFS clinics here. So the only way to have ME, is to be self-diagnosed, which makes the above statements even more absurd.
ME and CFS don’t exist
A bold statement and yet I have heard it from 2 world renowned experts: Dr. Byron Hyde from the Nightingale Research Foundation and Prof. Dr. De Meirleir from the Himmunitas Foundation. The video interview of Dr. Byron Hyde on Swedish TV is no longer available, at least the last couple of times that I checked. The interview with Prof. Dr. De Meirleir was uploaded to YouTube and is still available.
Given that Kenny De Meirleir is co-author of the original and revised Canadian ME/CFS Case definition this might seem strange, but what it means is that you can’t study or treat/cure a disease solely based on symptoms. You must look for a cause and as far as I know there is no single identified cause for all patients. In Belgium ME is, as far as I know, not a valid diagnosis and if you want to be diagnosed with CFS you must go to a psychosocial clinic. Prof. Dr. De Meirleir apparently found a way around this by providing a description of what ails you in his reports instead of using one of the aforementioned labels.
As a patient of prof. dr. De Meirleir I heard that I fitted the criteria based on my symptoms and yet I got diagnosed with gut-immune-neurotoxic disorder. I asked on a forum how patients of Dr. De Meirleir were diagnosed and almost all of them (at least the ones that responded) had received the diagnosis of gut-immune-neurotoxic disorder. The diagnosis is based on the results of extensive testing which also means that I don’t fit the criteria used for CFS in Belgium, namely the Oxford criteria.
PS: Actually my question on the forum got censored, it was only after I proved to the moderators that I wasn’t the first to post this on the forum and that Prof. Dr. De Meirleir, together with Dr. Chris Roelant and Dr. Marc Frémont, talked about this on a conference in Madrid on the 26th of May that my message appeared on the forum again.
A Rose By Any Other Name Would Still Smell As Sweet …
I don’t care(much) how I get diagnosed, whether it is CFS, ME, ME/CFS, PVFS, CFIDS, gut-immune-neurotoxic disorder, … or even CUND (Currently Unknown Neuro-immune Disorder). 
It’s just a name. More important is getting treatment, even if only the symptoms are treated.
If I would have to define two priorities it’s biomedical research, which hopefully will lead to biomedical treatment, and respect. Respect so patients are not forced to participate in psychological experiments with proven adverse effects and don’t have to live in constant uncertainty whether to get or keep their disability benefits.
I admit I haven’t read anything by Shakespeare yet, but I love quotes. I will now end with the complete quote:
| What’s in a name? That which we call a rose By any other name would smell as sweet. |
| William Shakespeare |
Resources
- Blue Ribbon Campaign for ME/CFS: Science and Consensus
- Campaign for a Fair Name
- The Development of a Revised Canadian Myalgic Encephalomyelitis Chronic Fatigue Syndrome Case Definition [PDF]
- Health Matters Show: CFS versus ME/CFS: What’s in a name?
- Stock photo: Torns 2 via stock.xchng
- Swedish TV: Interview Prof. Dr. Kenny De Meirleir part 1
- Swedish TV: Interview Prof. Dr. Kenny De Meirleir part 2 (pay attention to answer starting at 6:35)
- Swedish TV: Interview with Dr. Byron Hyde
- WPI in Science: Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
{ 7 comments… read them below or add one }
Does this help? http://www.youtube.com/watch?v=JWHWf1yJRac
What Bryon describes is the same thing that Dr Cheney found on the brain scans of the patients he did in Incline village… like a web netting over the brain… that his AIDS Dr. friend said.. that’s what I see on my AIDS patients… Thus..IMHO we have the ME that the CDC refuses to acknowledge could ever jump
country borders….. fools !!!
The WPI can ONLY refer to it as CFS because they are dealing with the Gov’t agencies in the USA ans the CDC call is by CFS since the beginning…
The ONLY time they CAN “change the name” will be AFTER their findings have been replicated and
then those with XMRV and CFS= “we will choose” to call X=AND whatever their co-infection is…thus XAND.
I have agreed about the Hummingbird BS…. and the The Campaign for a Fair Name has always been a good site..
Using the “excuse about NOT changing the name cuz it will confuse people” is the VERY AM BS that the CDC used as to why they would NOT let go of CFS when we wanted to change their BS=CFS name to at least reflect the SEVERITY of the symptoms and call it CFIDS>years ago… like maybe 15 years ago……
others might have a more exact date…
The CDC “ARE” the REAL Culprits here cuz the rest of the world “blindly follows” and this time it is covering up an epidemic http://www.vimeo.com/9714250
The UK has only recently adopted the BS CFS name (I’m talking in the entire history of this illness) and started blending the CFS/ME to show lack of severity to the ME, and side with the Psychs that wanted to take over the illness and continue to abuse the patients, stigmatize them, and delay and REAL scientific progress.
PS: Even after you spend YEARS healing the gut… you are still left with “Post Exertion Relapse” and possibly by then heart damage that gives you OI and POTS, but then I suppose they think the Heart
is IN your head also?
PSS: What Disability? The ONLY way to get it here is to lie and claim you have Depression or some other BS….”NOT gonna do it.”
I think I have that video in my YouTube favorites, but the one I am looking for is the complete interview.
Only time will tell if XMRV is THE infection, a co-infection or a harmless opportunist. Even if finally a study is published which confirms the research of WPI (methods and results) that is still no proof that it’s the cause. This could take years to prove. Even people getting better on anti retro-viral meds doesn’t proof cause. Correlation isn’t causation. So I am not going to start using XAND.
I know you do not receive disability benefits, that is why I mentioned it: “respect, so patients don’t have to live in constant uncertainty whether to get or keep their disability benefits”
There is also an important cultural side to the name issue.
Let us not forget that ‘ME’, ‘CFS’, ‘CFIDS’, ‘PVFS’… actually belong to a nomenclature that is mostly restricted to the anglosaxon part of the world.
In France most doctors don’t tend to see ME or CFS as a separate clinical entity. Many of our fellow patients in France are still diagnosed with ‘spasmophilia’, a very ‘French’ disease.
The Japanese, who focus on immune abnormalities, are quite descriptive (on causation) in their nomenclature. Re: ‘low natural killer cell syndrome’, etc…
The most descriptive of all are the names given by ‘traditional medicine’ systems. In Indian traditional medicine e.g., AIDS- and ME/CFS-like disease is referred to, since thousands of years, as ‘Bala Kshaya’ or ‘Oja Kshaya’, sanskrit names that respectively mean: ‘breakdown of life power’ and ‘breakdown of immunity’.
The truth has always been in the eye of the beholder.
Let me just add this: the name ‘gut-immune-neurotoxic disorder’ is a brilliant one, because it goes beyond cultural boundaries and truly reflects the current state of the science.
Yes, I like it too. You have the test results, there is something wrong with the gut, there is something definitely wrong with your immune system and it affects the functioning of your brain … et le voila: gut-immune-neurotoxic disorder.
Nothing flashy or hip, just a description.
I also heard that in France more people get diagnosed with FM, but that is just a rumor.
Bala Kshaya and Oja Kshaya, I like those. Good names for a website. Will mention those names in my next conversation with my Indian penpal. See if he knows anything about it.
If you are interested there is a very well-balanced article on the ayurvedic approach to treating CFS on this page: http://www.alandiashram.org/school/school_html/reviews/chronic_fatigue2.html It clearly shows that Bala Kshaya is not seen as one clinical entity, and how treatment is tailored to each patient’s individual needs.
In 2008 I have written an article for a Dutch magazine, in Dutch of course, on ‘Bala Kshaya’, that outlines the parallels between the modern western biomedical approach and ancient ayurvedic approach to CFS. Different medical paradigms, same findings: neurological, inflammatory and cellular immunity issues. You can read it on my old blog: http://sampraxis.blogspot.com/2008/12/mecvs-in-ayurveda-bala-kshaya-korte.html