ME is not FND; ME is a multi-system physical illness following a viral infection or other stressor.
Myalgic Encephalomyelitis (ME) is not 'functional' or 'psychiatric'; it is not anxiety or depression. It is not Medically Unexplained Symptoms (MUS), Functional Neurological Disorder, nor an eating disorder or any other psychiatric or psychological labels.
According to international scientific consensus, ICD classification and numerous guidelines, ME is a physical, multisystemic, long-term disease that significantly limit patients’ ability to perform activities of daily living, not functional neurological disorders (FND) or psychiatric illnesses.
For decades, attempts have been made to treat and rehabilitate people with ME on the assumption that it is a functional neurological disorder, with poor results. In some patients this has even led to a permanent worsening of the disease.
There is no scientific evidence that the methods developed for functional neurological disorders benefit ME patients. These methods may even be harmful for ME patients.
None of the ME guidelines recommend the use of FND treatment methods, therefore ME should not be treated as such. The diagnosis, treatment and management should follow national and international ME guidelines.
The NICE guideline on ME/CFS prohibits the use of functional neurological disorder methods and methods based on the assumption that patients’ symptoms are caused by deconditioning, avoidance behaviour related to physical activity or misconceptions about the disease. No treatment should be offered as a cure.
Unfortunately Neurologists are not educated about ME and are likely equally lacking in knowledge about Long Covid. The focus tends to ignore that the illnesses have stemmed from viral infections which have caused long term physiological illness.
Neurologists deny the existence of ME and Long Covid, and tend to say they don't like the labels and instead call them Functional Neurological Disorder or even Conversion Disorder. After diagnosing ME patients with FND instead of with ME neurologists assure them that there is nothing seriously wrong with them and offer referrals to a psychologist and to psych treatments.
Alarmingly, in one UK survey* the majority of neurologists (84%) said they don't believe that ME is a neurological illness and see it as a psychological. This is because people with ME 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 as a functional neurological disorder (FND) is the neurologists’ way of describing patients with neurological symptoms but not what they believe is a neurological disease.
It’s a similar form of diagnostic labelling 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.
It is unwarranted to view Myalgic Encephalomyelitis (ME) through the lens of functional neurological disorder (FND)
FND is a psych label which disregards the physical symptoms you have as a result of having a biological, physiological illness. Putting an end to any suggestion by doctors (mainly neurologists & psychiatrists) of you having a psych illness will likely do you a lot of favours in terms of how you will be treated by doctors and other healthcare professionals in the future. It will certainly prevent you from being treated with inappropriate psych treatments.
The danger with FND is that specialists likely assume that the root cause of the illness is psychological and they will get you to push through illness when in fact it is critical not to. FND fails to take into account physiological symptoms that stem from biological illness. Like with ME, people with Long Covid must carefully mind their activity/avoid activity and pace themselves. It is very important to rest and avoid the atypical post exertion response which leads to relapse/deterioration.
The denial of the presence of a physiological illness like ME or LC is potentially harmful because it ignores the need for the patient to avoid activity and prevent the atypical post exertional response.
David Tuller often refers to FND in his writings; we are linking a very recent piece from Stat News where he and two others write about their concerns about neurologists and psychiatrists referring to Long Covid as FND. Article Here
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