There are some uncanny parallels between how ME/CFS (the disease) and being transgendered are treated in current society. I’m trying to slowly find a way of describing these, because they seem to be the hooks on which a lot of self-doubt and anxiety hang for both classes of people. I think it’s a zeitgeist issue: one currently so embedded in western thinking, especially the latter, that it’s hard to see. I’m going to try to look at these, starting with the issue of Naming, which leads to the issue of psychologising what is, on the one hand a serious organic illnesses, and on the other, a benign variation in human makeup like having a nice big nose, but in this case highly stigmatised to the point of torture and murder. And the consequences of this psychologising are that already dispirited, anxious, low self-esteemed people are the one hand not taken seriously in a symptomatic way by doctors, and on the other hand medicalised beyond belief. And I think a lot of this originates in naming problems. Yes that’s right, I’m going to have a moan. This will probably be a three-part post. What I’m doing is called pacing: so first, CFS/M.E.
The condition commonly now known as M.E. in the UK has had a huge number of names in its time, all of which tend to confuse in some way or other. Common names currently: Myalgia Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Post-Viral Fatigue Syndrome (PVFS). You’ll also see the “encephalomyelitis” transmute into “encephalopathy” sometimes, either because it’s easier to spell, or for more sinister reasons. If you like words, you can push further back and find a reference in 1750 by Sir Richard Manningham to a syndrome referred to as febricula which rings some bells; Florence Nightingale and Charles Darwin had something similar. From the 1860s, the name neurasthenia was given to something quite similar, and in the 20th century, various isolated “outbreaks” have given rise to various different names: Icelandic disease in Iceland, Royal Free Disease in Britain, and Tapanui flu in New Zealand. Decent enough histories here and here.
You can guess from the proliferation of terms above that its causative elements are hot potatoes. I’ll be calling it M.E. or CFS/ME, because that’s how it’s known in the UK usually, the name recommended in the Chief Medical Officer’s report of 2002, and recognised by the World Health Organisation. Notice also chronic fatigue is listed separately there, and is a description of a state people can get into when severely depressed, or subjust to a temporary viral condition etc. When a doctor consistently refers to your condition as “chronic fatigue” (as one of mine does), this may show an underlying belief that it’s other than an organic disease (or may just be a misguided nervous attempt at empathy: “I know what you’re going through” shorthand).
I can’t face going through the intricate details of the debate about the nature of CFS/M.E. in the UK at the moment, and you can’t face reading about it: if you don’t have it, it may look like splitting hairs, and if you do, you’ll know it all already. So I’ll just give a summary, and leave some links up, vital as I think this is.
If you suggest that your M.E. is an organic condition and why the heck isn’t your GP looking for symptomatic organic components, or why isn’t s/he up on the latest US research which is finding abundant physical markers of disease, you’re often told (with that doctor’s smile) not to be so literal about the mind/body split: don’t be a dualist, and instead recognise that every physical disease can have psychological components: the brain is an organ too (don’t I know it! mine certainly gets hit in all sorts of ways by this disease: memory, mood, etc.). This is a way of wiggling out of the principle of primary cause. If someone has a bad back, they may get down, because they can’t work, see any friends, or get any sleep; if someone has cancer, it’ll have a shocking effect on their life, fears for the future and state of mind. And yet vigourous active research is conducted into the causes of cancer, and although patients are (of course, as they should be) encouraged to adopt a positive attitude, they’re also given drugs, and symptomatic relief, and doctors look towards a cure. Of course mental attitude affects the body’s ability to recover: brain and body are the same thing. But if you have cancer, you need more help than positive thinking or “taking a different attitude”.
Doctors used to be accused of not taking a “holistic” approach to medicine, and I think by adopting attitudes such as the above, they feel they’re meeting that gap and being much more 21st century. It’s a cheap way to enlightenment, and doesn’t work for patients with real organic illnesses, for whom they have no treatment or knowledge about at hand.
Meanwhile research continues apace in other countries to find organic causes of the disease; doctors for those lucky enough to have health insurance in the US routinely give treatments to patients that a GP will laugh at here (it’s happened to me) as if you’re asking to try sitting under a pyramid for a few months.
A lot of the blame for this in the UK can be laid at the feet of Professor Simon Wessely, a psychiatrist who’s vigourously and successfully campaigned to grey these boundaries between mental attitude and organic illness, specifically for M.E. and latterly Gulf War Syndrome. He and his gang have managed to convince the UK government that most of the money allocated to M.E. patient care should go into CBT (cognitive behavioural therapy – to help the patient rethink whether they’re ill) and graded exercise (to make the patient do more each day regardless of relapse – which has been documented time and time again to make many M.E. sufferers relapses so badly that their illness is set back years, or permanently).
Here’s Wessely in his own words.
The reason he can show this from research, is exactly because of the lack of consistent classification of the condition, which goes back to naming. If you call it M.E., you fall back on the World Health Organisation definition of an organic disease. If you call it CFS, or Chronic Fatigue Syndrome, you start to imply that it’s mainly about being tired, which depressed people get too. If you drop it down another gear to “chronic fatigue”, you fall into a whole different W.H.O. classification, which includes a lot of depressed people, for whom CBT and graded exercise will really help. So if you can find a set of criteria which includes a broad spectrum of these “chronically fatigued” people, your results will appear to work on average, and your research grants renewed. Just make sure you don’t use a narrower, more accurately targetted set of criteria, like the recent Canadian Definition for ME/CFS, which might actually mean you’d be dealing with the core of people with an organic immunological disease.
One of the fighters for sanity in all this has been the Countess of Mar. Last year she banged on in the UK parliament to try and nail this issue down, bless her. Here’s a link in Hansard (the UK record of parliametary proceedings) to an exchange between herself various Lords. If nothing else, international visitors will find the formality amusingly quaint. Imagine 90 year olds nodding off all over the place on wooden benches.
I’ll quote some here:
Despite the fact that a senior civil servant in the Department of Health has confirmed that it works to the ICD 10.G93.3 definition of ME/chronic fatigue syndrome, Ministers are providing false information to MPs by advising that it is the WHO itself that has reclassified ME as a mental disorder.
… How has that situation arisen? A very small group of UK psychiatrists, known colloquially as the “Wessely school”, led by Professor Simon Wessely of Kings College, claims to specialise in ME—a discrete term denoting a discrete disorder, but a term that it uses interchangeably with chronic fatigue or tiredness
… Since his arrival on the scene in 1987, Wessely has repeatedly and persistently played down, dismissed, trivialised or ignored most of the significant international biomedical evidence of organic pathology found in ME because it does not fit his psychiatric model of the disorder, for which he claims to have developed a more intensive form of the psychiatric intervention known as cognitive behaviour therapy (CBT). That consists of using intensive, mind-altering techniques to convince patients that they do not suffer from a physical illness. It also includes forced regimes of graded exercise to be supervised by a Wessely school-trained psychotherapist aimed at getting patients back to fitness.
Wessely school psychiatrists are about to receive £11.1 million, including £2.6 million from the Medical Research Council, in an attempt to strengthen theweak evidence that his regime actually works for those with ME. Among his 53, largely undeclared, interests it should be noted that he is a member of the supervisory board of a company, PRISMA, that is supplying such rehabilitation programmes as CBT to the NHS for those with ME, even though such regimes have been widely shown, at their best, to be of limited and short-lasting benefit and, more importantly, at their worst, to be actively harmful to those with the disorder.
… Wessely states that patients belong to,
“a cult recruited from the environmental subculture”,
and that those with ME,
“feel no guilt about their condition: sufferers from mysterious illnesses that lie outside conventional medical practice no longer consider themselves to be oppressed by spirits and demons but by mystery gases, toxins and viruses”.
Wessely has made numerous statements about the non-existence of the disorder that can only be described as savagely cruel to the ME community. For example, he refers to ME as a “myth”. He believes that it,
“should not be dignified by [its] own formal case definition and body of research”.
He asserts that symptoms found in ME,
“have no anatomical or physiological basis”,
and that “muscle weakness is simulated”. He advises that, to the majority of professionals, ME symptoms,
“are indeed all in the mind”.
I can provide corroborative evidence of all those statements.
Neither the fact that they may be wrong nor the well documented errors of psychiatrists in the past who authoritatively misdiagnosed Parkinson’s disease, multiple sclerosis, epilepsy, diabetes and thyrotoxicosis as mental disorders before medical science revealed their true aetiology, seem to have occurred to the Wessely school.
I’m sorry to quote at such length. She goes on to discuss various clear biological markers of disease, and then a fist fight breaks out in The House. Lord Addington concludes his own feelings on the matter:
One thing is clear: the noble Countess’s historical basis for complaint is solid. There is a tremendous tradition, when we do not know the medical or physical causes of something, of bringing in the quacks, to put it bluntly. That has happened on numerous occasions.
I shall give the House an example to add to the one that the noble Countess gave. Dyslexia is the one that I know most about. I can remember being told in the mid-1970s that my inability to read and write at the same rate as others was due to the fact that I came from a single-parent family. There are others examples, so I suggest that we take a sceptical look at things. With regard to the noble Countess’s speech, I suspect that there are many libel lawyers who, on hearing our debate, will react in the same way as someone on a diet looking at a cake shop window. It is a lovely feast that they cannot get at.
We must face facts. There have undoubtedly been occasions on which mental health problems have been suggested for things that turned out to be physical conditions. That has occurred. The fact that ME has a physical component—an initial physical component, at least—has been agreed by, I think, everybody here.
The Department of Health responded to the Countess confirming that “the UK accepts lCD-10” (the W.H.O. definition as M.E. as an organic disease) but then goes on to say that the current rule is “discretionary” to each GP. It then goes on to emphasise that the UK doesn’t want blood donations from people like me with M.E. Just in case we pass on our somatic illusions via blood cells, presumably:
The underlying logic is that this condition is still of undefined aetiology, possibly viral, and therefore NBS cannot accept the risk of possible transmission by blood.
It should be remembered that donation must not jeopardise the health of the donor. It is not known what effect taking 470ml of blood from someone with ME could have on them.
Presumably Professor Wessely wouldn’t mind 470ml of my blood though? And maybe to his children if he’s procreated any little Wesselies? I imagine his face would bear an expression similar to the agriculture minister, John Gummer’s, during the BSE/CJD beef crisis in the UK, feeding beefburgers to his daughter: “try and look jolly, but darling, don’t swallow it“.
The offer’s there, Simon.
5 thoughts on “Naming I: CFS/ME”
Liked your caption for Wesseley there – you should take over from the beeb online’s captionist. Incidentally, I assume Wesseley is a psychiatrist rather than a psychologist, since the former are far more dangrous. Many psychologists would agree.
Thank you Vicky – of course he is. Entry surreptitiously edited to look like I know what I’m talking about. Shh – don’t tell.
Honey, first I have to say what a jättebra (hugely good) blog fumblings is and how thoroughly impressed I am with its quality and quantity.
Your CFS/ME entries, such as this, are spot on. Those outside of the CFS/ME sphere may not be aware just how political the naming situation actually is. There is a push to name it NDS (Neuroendrocineimmune dysfunction syndrome, a great mouthful), but of course no one can agree on that either. The most damaging name ever given to it IMO was “yuppie flu” coined around the time of the early eighties “outbreak” as the people who sought, or could afford to seek treatment were at the time were generally the type A personalities. Of course it being a condition related to wealth or personality has been shown to be utter poppycock with a higher incidence found in the working classes and minorities. But that horrible term still persists to this day.
A great if lengthy read about the history and political situation of CFS (up until 1995) is Osler’s Web by Hilary Johnson which can be found second hand for a few dollars.
Members of the OzMe list are continually decrying anything that has has been touched by the hand of Wessley.
PS I would be honoured if you would like link to my site!
Caleb, thanks so much for your kind comments. I know this kind of article may be of minority (CFS-people-only?) interest but you’re too kind.
Added your link now, and will refer to it explicitly if I ever get close to documenting my own illness history, which will be never. If anyone’s reading this and wants to see how well it can be done, here’s Caleb’s site.
Note for the purposes of journo consistency: I added a more relevant sentence from the Department of Health’s response to Countess of Mar above, to make it clear they don’t want our blood. What’s the opposite of a vampire in denial?