A New Name for ME: Good for us or bad for us?

ME, commonly confused with and lumped together with the unexplained chronic fatigue of ‘Chronic Fatigue Syndrome’ – primarily by the NHS – has a rather amusingly large number of hashtags on twitter: #ME (obviously), #MEcfs, #cfsME, #CFIDS (Chronic fatgue / immune deficiency syndrome), #MyalgicE, #MyalgicEncephalomyelitis, #Spoonie even, and now we can add the new hashtag #SEID.

SEID is the new name that the American ‘Institute of Medicine’ has given to the condition, christening it ‘Systemic Exertional Intolerance Disease’.

There are several things to note about this – please add your own thoughts as well, as I am sure I have missed plenty that could be said about this.

Improvement:

– Replacing ‘syndrome’ with ‘disease’ sounds like an improvement: ‘syndrome’ suggests an unknown collection of symptoms that fit loosely together but the connection between those symptoms may or may not be relevant. ‘Disease’ makes it sound a little bit more of a legitimate illness, recognised to be one coherent whole. Perhaps.

– The word ‘systemic’ is helpful in that it seems to acknowledge that whatever is causing the symptoms is affecting the whole body (although that’s not at all obvious in the diagnostic criteria).

– The removal of the word ‘fatigue’ is helpful since, although fatigue is often a core symptom, concentrating on fatigue has masked all else. For many, pain is a much more pressing issue than fatigue.

– Emphasising ‘exertion intolerance’, or ‘post-exertional malaise’ should now put paid to the dreadful PACE trial, CBT and GET – all of which are known to worsen symptoms in patients with ME (as opposed to any other type of chronic fatigue of unknown cause).

Steps Backward?

There are several things I am confused about and concerned about, which may well represent steps backward and put patients with ME in more danger of misdiagnosis and inappropriate treatment:

– The new proposed diagnostic criteria mention nothing of pain – as previously mentioned, for many people fatigue is much less of an issue than pain. For myself and many others, this pain is not a result of exertion at all, I am simply in constant pain.

– The new name and diagnostic criteria do nothing to address the cause of the condition. Even ‘Post-viral fatigue’ was a better name in that regard. The fact that the diagnostic criteria are so broad (and despite removing the word ‘fatigue’ actually still seem to actually focus on fatigue / post-exertional malaise) and remove such core symptoms as sore throat, flu-like pain, and cognitive / neuro symptoms, may actually make finding a cause more difficult, and it will almost certainly make finding funding for research focused on the missed symptoms more difficult.

– The WHO (World Health Organisation) already has an agreed definition for ME and categorises it as a neurological condition under ‘disorders of the brain’. Who are the IOM to redefine the condition? (Who are the NHS, for that matter to disagree with the WHO?) See the Action for ME document which details the WHO definition and others.

It has been suggested that the whole SEID renaming and re-framing may actually be a Trojan Horse. I’m sorry to say I can well believe it. Inevitably the infamous psychiatrist, Simon Wessely has been asked to comment on the change of name and diagnostic criteria, and according to the article in New Scientist, he ‘welcomes’ the change. That does very little to reassure me that SEID will be any kind of improvement over CFS.

I’m concerned it may add to, not reduce, confusion around this condition,” he says. I never thought I would agree with such a man (who, since it is nowhere legitimately defined as a psychiatric condition, really should not even be asked.) But there we are. We’ll have to watch and see how this impacts us.

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