Glossary of Abbreviations except actually they are acronyms

BD/AD – Before Dentist/After Dentist (don’t get me started on this)

CFS – Chronic Fatigue Syndrome. This term is often used interchangeably with ME. A lot of people have a problem with it because it trivialises what is in fact a disabling symptom –“the equivalent of trivialising dementia by calling it a chronic forgetfulness syndrome” – and, just as perniciously, it generalises it, so that anyone who’s ever been tired, i.e. everyone, can think that they know what the illness feels like and that it can’t possibly be that disabling and that you should be able to get over it just by, well, mainly by ignoring it. Sigh. There are about half a dozen sets of definitions of CFS (seriously), some of them so hopelessly vague as to require not much more than, just, feeling kind of, you know, out of sorts for a while.

IAIAIAWE – If Anyone’s Interested And I Am Well Enough

IAIAICBA – If Anyone’s Interested And I Can Be Arsed

ME – Myalgic Encephalomyelitis. I am grudgingly using this term to mean a serious neurological or neuro-immune illness that results in exertion intolerance, pretty-much-everything intolerance and a constellation of other symptoms. If I don’t have any particularly definitive description of it it’s because not enough research has been done to define it.

There is much strife and worry about what this illness should be called, and recently the American Institute Of Medicine has started calling it Systemic Exertion Intolerance Disease (SEID) . I thought this was a step in the right direction because it puts exertion intolerance front and centre, but other people I respect say the diagnostic criteria are still a bit askew. But don’t worry, they are planning to review it in five years…

Some people get very angry if you conflate ME with CFS, and after a decade or so of not bothering to find out why I looked it up: (this link) sets out the most popular arguments. There are also people who believe that ME always involves observable neurological damage (myalgia = muscle pain, encephalomyelitis = inflammation of the brain and spinal cord), and that CFS is entirely a bogus category entirely composed of atypical versions of other disorders and concocted by obliging doctors in order to aid medical insurance companies to avoid paying for chronic disease. But many of these people would also believe that my illness is not ME because its onset was gradual, so to me they sound like fanatics who can’t cope with subtlety.

My opinion is that there are probably some ME-type illnesses caused by brain damage and some caused by dysfunction, and some of this can be retuned or rewired and some of it can’t. We may have a situation where this isn’t a single illness so much as a category of illness a bit like mitochondrial disorders or muscular dystrophies. We won’t know until we study its biology more. But as you’re probably working out for yourself, this much strife about what to call the Judaean People’s Front an illness means the problem is not only how to define it but who gets to define it. The division is not in fact {patients} vs {doctors} but {doctors and patients who think that biology is relevant and should be studied} vs {doctors who avoid biomedical investigation because it only encourages people to think they’re ill}. Seriously.

NHNN – National Hospital for Neurology and Neurosurgery, Queen Square, London WC1N. Where I will be going. Provisional plan is an overnight admission during the last week of March.

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RLHH – Royal London Homeopathic Hospital, between the famous Great Ormond Street children’s hospital and the National Hospital for Neurology and Neurosurgery (see map). The RLHH is my dad’s old hospital, now renamed…

…RLHIM – Royal London Hospital for Integrated Medicine. It isn’t really relevant to this blog except that I’ve spent a lot of time there and I love the area, which is one of the things that makes going to the NHNN less daunting. I suspect flavoured vodka might be another.

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One thought on “Glossary of Abbreviations except actually they are acronyms

  1. Pingback: Something I’ve been meaning to say… – Frequently Asked Questions About My Horrible Disease

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