Question

We don’t have a local ME/CFS referral service where I live so I was referred by my GP to a consultant neurologist to help confirm that I have ME.
The neurologist told me that (like most neurologists) he does not like the name the ME and instead calls this condition a functional neurological disorder (FND). After diagnosing me as having FND he reassured me that there was nothing seriously  wrong and offered to refer me to a psychologist for help with management – which I declined!
So is having a FND the same as having ME? And could I have another opinion from a doctor who is more in tune with the recommendations in the new NICE guideline on ME/CFS?

Answer

As you probably know, ME/CFS has been classified by the World Health Organisation as a neurological disease for many years (in section G93.3 of ICD10) and we used to be in a position where there were excellent consultant neurologists like Professor Peter Behan in Glasgow who believed that ME/CFS was a neurological disease.
However, I suspect that most neurologists don’t now believe that ME (or CFS) is a neurological disease. In fact, in one published survey, the majority of UK neurologists (84%) said they did not believe that ME or CFS is a neurological disease and see it as a psychological problem.

More information:
https://tinyurl.com/2f3y77dd

This is because people with ME/CFS often have neurological symptoms but they don’t normally have any of the classic physical examination signs of neurological disease and there aren’t usually any abnormalities on blood test results or striking abnormalities on brain scans.
So diagnosing ME or CFS as a functional neurological disorder (FND) is the neurologists’ way of describing patients who turn up in neurological clinics with neurological symptoms but not what they believe is a neurological disease. It’s a similar form of diagnostic labelliing to medically unexplained symptoms (MUS) or a functional somatic syndrome (FSS) that are used by other specialists who don’t like the name ME.
Neurologists don’t normally want to get involved with the management of patients with FND. So, after making a diagnosis they may refer the patient to a psychologist or psychiatrist for management.
If you have decided that you don’t want to continue with the type of management being recommended there is no compulsion to do so. If your local NHS Trust does not have an ME/CFS referral service it would be perfectly reasonable to ask for a referral to somewhere that does. But having had one specialist referral you may find that your GP is not going to willingly arrange another one.

If you are under the care of a neurologist who believes that ME/CFS is a neurological disease, please let us know.