The U.S. Institute of Medicine (IoM) published a report in February which made a number of recommendations regarding the name, clinical definition and diagnosis of ME/CFS.
With regard to the name, the report recommended that CFS and ME should be replaced by a completely new name – systemic exertion intolerance disease (SEID).
The IoM did so because they concluded that CFS is no longer suitable and that ME (as myalgic encephalomyelitis) is not an accurate term. This is because some people with ME do not have myalgia (= muscle pain) and what neurologists understand as encephalomyelitis (= a widespread and significant inflammation involving both the brain and spinal cord) has not been proven.
The IoM therefore recommended a new name for both CFS and ME – one that includes the widespread nature of symptoms (= systemic), the presence of post-exertional symptomatology (= exertion intolerance), and the acknowledgement that is is a real illness with a pathological basis to it (hence disease).
So far, public opinion on the new name on internet discussion forums, including MEA Facebook, has been very mixed. Many people have expressed negative or very negative opinions. Others have given a cautious welcome the new name.
The MEA position is that achieving a consensus on a new name should have involved a much wider group of international health professionals and that the patient community should have been asked for their views before any firm recommendation was made. We have also stated that we believe that further consideration should be given to the name myalgic encephalopathy – which retains the letters ME and cannot be challenged on the grounds of pathological inaccuracy.
However, the report has been published, a firm recommendation on a new name has been made, and it seems likely that the new name will be used – certainly in North America.
So the purpose of this month's MEA website survey is to find out what people with ME/CFS in the UK think about the new name. This will be important if moves are made by health professionals here in the UK to replace both CFS and ME with SEID.
So please give this question some thought and let us have your views.
If you want to comment as well, please do so via ME Connect, or through the discussions on the new name that are taking place on our Facebook.