One thing I think we should realize is that ME has its own baggage...ME has been tainted by Wessely and his gang. Despite its medical definition and classification, it got a bad wrap in the UK. I want a better name for them also, one that does not carry the bias and stigma that has now been associated with it. The ME term does not help in changing public perception over in the UK.
I have seen this kind of assertion made about the image of the term "ME" in the UK several times on the forums, but only ever by members from the US, and whenever I hear this, I am puzzled because I don't recognise this perception as consistent with my own experience.
Every ME charity and campaigning organisation in the UK that I am aware of uses the term ME exclusively: The ME Association, ME Action, ME Research UK, Invest in ME, the TyMEs trust, and even Action for ME use the term ME. (Did I miss anyone important? Sorry if so).
Only the psychiatric lobby adopts the term CFS in the UK, a term created in the US by the CDC, and they currently refer to "CFS/ME" to describe a broad Oxford-based cohort - a cohort which properly speaking actually defines "chronic unexplained fatigue", and is used in the NICE Guidelines and all the rubbish CBT/GET research.
The psychiatrists and their supporters in the UK are in the habit of talking about
"CFS - also sometimes popularly referred to as 'ME'", in a continuing attempt to discredit the term "ME" as if it were some kind of 'folksy term' used only by ordinary people, rather than the historical medical definition of the disease before it was re-branded as "CFS" in the late 1980s.Their line is essentially that the term "ME" should be gradually be retired and replaced by "CFS". They argue that "myalgic encephalomyelitis" is not proven to be a medically accurate description of the pathology. They are keen to retire the term, and use an ever-broader Oxford cohort to study Chronic Fatigue, in order to mask the reality of the biomedical phenomena associated with ME, prevent biomedical research in favour of their own psychological research, and further the interests of their insurance industry backers.
The psychiatrists in the UK are so keen to denigrate and retire the term "ME" and replace it with "CFS", and this alone should be a clue that the term "ME" is threatening to their interests but is in the best interests of ME patients.
Finally, in my own conversations with members of the public over the last few years, I have yet to find a single person who has even heard of the term "CFS", or "ME/CFS" or "CFS/ME", but everyone I have spoken to has heard of ME. Yes, there are some people I have met who "don't believe in ME", but there is normally somebody around to assure them that this is simply because they have never personally encountered it in a family member or friend, and if they knew somebody close to them with ME, 'not believing in it' would not be an option. Although opinion is undoubtedly divided, and ignorance is rife, most people I have spoken to are sympathetic regarding ME. For example, my manager expressed surprise that there is still any doubt anywhere that ME is a real, biomedical disease - he said he thought that argument had been scientifically settled more than 10 years ago, and of course he's scientifically right, despite the ongoing political management of "CFS/ME".
So I would welcome any other views from the UK, but I don't personally recognise the concern that some US members have expressed about the idea that "ME" has been stigmatised and does not help public perception in the UK. All our charities still use it, the psychiatrists oppose it, and the public recognise it - I think it is the clear name of choice in the UK.
And of course the prevalence of the name "CFS" in the US causes a great deal of transatlantic linguistic misunderstanding and friction between advocates, because I think "CFS" is seem simply as the "slave-name" and the language of the oppressor over here, whereas in the US, it is simply the only name in widespread use.
And, ME has the problem of no use in the US, no research in the US, etc. No criteria for getting disability. Getting government agencies to study a lesser disease that isn't even reported in the US is not going to happen. Getting doctors in the US to diagnose people with a disease that isn't even listed on the CDC website and for which they learned nothing in medical school is not going to happen.
That's a clear practical problem in the US, and something that I think many UK-based advocates don't always appreciate. That different context means that the practical, pragmatic arguments are different in the US - the problem is, that what happens on one side of the pond affects the other, and the historical differences in terminology are a major problem for us all.
We need a totally new name for the one disease, and then have subgroups, types or stages, as happens with other diseases. Notice, for example, that MS is split into four types:
http://www.mayoclinic.org/multiple-sclerosis/types.html Same name. Same disease, but a different manifestation in the patients, so they are grouped by the symptom presentation.
Having said all the above, I do think that a completely new name and a fresh start might be the way forward. And I definitely agree that the "four types" example of MS seems an entirely appropriate analogy. Baraniuk's recent work, presented at the IiME conference, suggests 4 distinct subtypes of ME/CFS which can be identified both by cluster analysis of symptomology, and (consistently) by distinct spinal fluid analysis. And even in the original descriptions of the 1955 Royal Free Hospital outbreak, from which the term myalgic encephalomyelitis was coined, distinct subgroups were described in terms of the long-term response, with about a quarter of those affected becoming and remaining severely ill. I think it might be very helpful in any arguments about classification to re-visit the reports on Royal Free, because my recollection is that even the early papers described different levels of response to the original outbreak. My personal guess is that the model of 4 types of MS may very well prove to be an even more accurate analogy to ME/CFS than anyone has yet realised - the explanation of those 4 subtypes may very well turn out to be quite precisely matched by the 4 subtypes of ME/CFS. It's well worth looking at the 4 sub-types of MS, for anyone interesting in a model for sub-classification of ME/CFS, and anyone trying to cut through the maze of the arguments that "ME is not CFS".
I think maybe we can agree that either ME should be the name and coding used with the CCC or ICC or a new definition with levels of severity for subgrouping. Or, we can agree that a totally new name altogether is needed.
I think my summary would be that whatever the recommendations on naming, we should push for research into sub-typing and cluster analysis of symptoms and biomarkers, and be very careful about any suggestion that we are describing a cohort and a definition that should be studied on the basis of an assumption that it represents a homogeneous population.
