Elaine Showalter's 'Hystories' - a reply to a BBC Radio 4 interview

Elaine Showalter - BBC Radio 4 ‘The Afternoon Shift’ - 17th June 1997

A Reply - written by a CFS sufferer

Elaine Showalter appeared on the Afternoon Shift on BBC Radio 4 on 17th June 1997. For those that don’t know the BBC, Radio 4 is the national ‘speech’ station - it tends to be more serious than Radio 5 Live, which is almost a ‘talk’ network. The ‘another’ that my letter refers to was Roy Potter, who fooled me - I thought he was a psychologist, though I now understand he is a historian.

On the 18th June 1997, the Afternoon Shift broadcast an edited version of my first four paragraphs (starting with “I suffer from Chronic Fatigue Syndrome”). Preceding my note they read extracts from another email from a mother writing about her daughter who’d had to drop out of her Maths PhD due to CFS. The presenter also said that they’d received a great deal of hysterical emails and faxes.

It seems that the correct way to counter Showalter’s arguments is to attempt a dispassionate rebuttal, rather than an emotional note attacking Professor Showalter. This can only reinforce her view that CFS is hysterical.

Any comments are welcome - please email me. You can republish and copy the letter, or any part of it freely (though I would ask that you do me the courtesy of letting me know if you intend to publish this letter, and I would ask that you acknowledge the source, and that you indicate if your reproduction is an edited or shortened version). Please feel free to use this material to write your own letters and articles about Showalter: I do not want to be credited in this case, though I would appreciate copies of any material based on this letter.

What follows is the original text of the email I sent to the BBC on the evening of 17th June.

David Wood
david@wood2.org.uk
19th June 1997, minor updates 23rd May 2001

Go to my home page.

Dear Sir / Madam,

The Afternoon Shift, BBC Radio 4, 17th June 1997

I write with regard to the interview with Elaine Showalter (and another), somewhat concerned about the balance of the piece.

I suffer from Chronic Fatigue Syndrome, and have done so since November 1993, although I wasn’t diagnosed until February 1995 (by Dr Janice Main at St Charles Hospital, London - Dr Main also lectures at St Mary’s Hospital Medical School). I am not medically or psychologically trained, though my background is in science - I was part way through a BSc Chemistry course at Imperial College, London, when poor health forced me to abandon the course. My understanding is that Professor Showalter is also not medically trained - instead I believe that her main fields are History and English.

Showalter offered ‘hysteria’ as a convenient ‘dumping ground’ for all conditions that cannot be explained in terms of a physical origin. In my own case, the disease had a sudden onset - it started when I woke up one morning with what appeared to be a throat infection.

This ‘blurring’ that Showalter promotes is the exact opposite of what researchers in the CFS field are pushing for - poor subtyping of Chronic Fatigue patients frustrates much research. In the ‘pool’ of patients with chronic fatigue, there sits many conditions: Lyme Disease, Rheumatoid Arthritis, Lupus, Multiple Sclerosis, Depression (and Manic Depression) and Chronic Fatigue Syndrome - these are just those that come to mind. Some of these diseases are easy to identify and have some treatment possibilities - most are not easy to diagnose, and there are few treatments.

Taking Ms Showalter’s argument to a (admittedly somewhat absurd) conclusion, she would dump many patients from this group in ‘hysteria’ and leave it as that, just because of the difficulties of diagnosis and the lack of understanding of disease processes. Some of these conditions are fatal if left untreated, yet Ms Showalter seems to be discouraging proper diagnostic efforts. At best this attitude is irresponsible, at worst it is highly dangerous.

There is a definition of Chronic Fatigue Syndrome from the US Centers for Disease Control, which was last revised in 1994 (the 1994 CDC criteria). This offers a very narrow definition of what CFS is - a definition which I fit. Many CFS patients do not fit these criteria in their entirety - but the main requirement is that all other possible conditions have been excluded. The only method of diagnosis of CFS is by such an exclusion method. This is a problem - at the moment there is no definitive test for the condition.

I must draw a parallel with the status of Multiple Sclerosis some twenty to thirty years ago. Originally MS was dismissed as a hysterical condition and a malingerer’s charter - indeed more or less where CFS is now. Research eventually proved that MS is a disease with an organic origin - labelling MS sufferers as ‘hysterical’ probably led to much inappropriate treatment being offered.

I do not deny the involvement of the brain in any chronic condition. I saw a Clinical Psychologist last year, who concluded that there was nothing psychologically wrong with me. He concluded that I had some disease of organic origin. I wasn’t surprised to learn from him that many sufferers of AIDS and cancer, two diseases with organic causes, suffer from depression as a result of their illness (usually called reactive depression). The same is true of CFS sufferers - many CFS sufferers suffer from secondary, reactive, depression as a result of their primary disease. It is important to distinguish the cause and effect here - there is a difference between reactive depression and a primary depressive state. I have taken different anti-depressant medications for most of the last three years (at doses lower than that used for true depression), and, although these drugs have helped me with some cognitive and memory problems, it has not provided a cure for me. Most, if not all, CFS patients report similar results with these drugs - they are only really effective if depression has also taken hold, and all they can ‘cure’ is the depression.

Much controversy surrounds the work of Simon Wessely (Kings College Hospital, London) on the uses of Cognitive Behaviour Therapy with CFS patients. I do not dismiss Wessely’s work - severe deconditioning, bringing with it many other physical problems, can result from total inactivity. However, my psychologist dismissed CBT in my case, as he felt there was no psychological aspect to my condition, and that any physical rehabilitation was best left to a physiotherapist, or similar expert.

Graded exercise as advocated by Wessely is not a universal cure - some CFS patients, including myself, find that these programmes are too physically demanding, and can lead to regression in our conditions due to pushing ourselves too hard. This is not consistent with a wholly psychological model of CFS.

Simon Wessely, like all researchers, suffers from the problem of poor subtyping amongst Chronic Fatigue patients I mentioned earlier. Not being sure of the exact clinical diagnosis for many research subjects produces uncertainty in the application of results, and often brings into doubt the value and integrity of the entire project. However, if there were better criteria for separating the patients in this type of study, we might learn more about the treatment options, as well as the origins of the disease. Instead Ms Showalter appears to encourage the creation of a larger ‘container’ diagnosis, which would produce an even more heterogeneous group from which to draw research subjects that the current CFS grouping.

I am left with several concerns:

I wonder if Ms Showalter’s aim is simply to promote sales of her book ‘Hystories’ (in the US - I think the British imprint may have a different title), which, I understand has sold poorly, particularly in the United Kingdom. As the author, I expect that she receives a royalty from every copy sold - so it is obviously in her interest to stir up as much controversy as possible. I have not read her book, for the simple reason that I disagree completely with her fundamental premise, and I also doubt her level of scholarship on medical matters. I refuse to pay money from my limited income to read material that flies in the face of much medical research.

If Ms Showalter’s aim is simply to peddle her book, then I would regard this as advertising on the BBC, breaking the Corporation’s long tradition of not pushing commercial products, and also endangering the Corporation’s well-deserved reputation for excellent, objective, journalism. At the end of the segment, the producer offered the Radio 4 helpline number, saying that they could provide details of Ms Showalter’s book (as well as details of ‘patient organisations’).

Dumping people with varied conditions into a group called ‘hysteria’ is not useful - and to my ear, this is what Showalter was encouraging. The dictionary I have to hand (Collins Concise, 1982 edition) defines hysteria as: a mental disorder characterised by emotional outbursts and, often, physical symptoms such as paralysis. This is a poor description of the disease I suffer from - emotional outbursts rank very low on my own list of symptoms. The disease I suffer from has left me with constant pain, weakness, and the tendency to tire very easily. My legs are so badly affected that I have to use a wheelchair to go any distance - my condition simply does not fit with this definition of hysteria.

As the term ‘hysteria’ is so badly defined, and misunderstood, why does Showalter want to use it, other than to provoke controversy? For example, the condition now know as AIDS was originally know as GRID (Gay Related Immune Disease, or similar). This attached stigma to a condition that is already hard to cope with - so the condition was renamed. Why does Ms Showalter want to stigmatise a group of people who are seriously ill any further? The GRID name for AIDS was incorrect, for the disease was not limited to the homosexual community - hysteria seems an equally incorrect label for a group of diseases it could be applied to.

Digging in history to investigate modern medical problems is virtually useless. Showalter admits that ‘hysteria’ has changed over the ages - I am left wondering how she is so sure that she’s talking about the same disease. One example often cited is that of Florence Nightingale, who, upon her return from the Crimea, suffered for some 40 years with an exhausting disease, often described as neuromyasthenia. Showalter described neuromyasthenia as a disease which still exists, albeit in a changed form, and commended it to her ‘hysteria’ label. There is really no way of knowing exactly what Nightingale suffered from - medical science has moved so quickly, especially in the last 20 years. I am quite sure that we do not have any detailed blood test results that measure up to modern standards for Florence Nightingale. Without rigorous proof, any conclusions are mere conjecture, and, in the name of good science, must be identified as such.

Whilst accepting that Freud is one of the founding fathers of modern psychology, I find any attempt to apply his methods to the wide group of people suffering from various conditions useless. Such attempts are little more than sweeping generalisation, which cannot be backed up with substantive research.

Personally speaking, I would be delighted if they found a definitive cause of CFS, whether it was physical or mental. Once a proper cause has been identified, then work on a diagnostic test can move forward, and treatment plans can be properly developed. Maybe then I will be able to return to full time work or study - instead I am sat at home, unable to work or study even part-time. However, there is a lot of medical research that demonstrates physical abnormalities in CFS patients, for example, the work of Professor Behan in Glasgow concerning mitochondrial abnormalities, and the work by Dr Demitrack in the US [Demitrack M A, J K Dale et al. “Evidence for Impaired Activation of the Hypothalamic- Pituitary-Adrenal Axis in Patients With Chronic Fatigue Syndrome” Journal of Clinical Endocrinology and Metabolism 73 (1991); 1223-1234]. Dr Demitrack has found endocrinological problems in some CFS patients - which could explain many symptoms. Much more research is needed, however, and work like Ms Showalter’s can only discourage those attempting to work in this controversial area, where reputations can easily be permanently ruined, and careers ended. I cannot think of any research published in learned journals concerning a wholly psychological cause of CFS that stands up to peer scrutiny.

I would like you to address the imbalance your programme conveyed in this difficult area, maybe by inviting someone such as Dr Charles Shepherd, or Dr Anne MacIntyre (both from the ME Association) to speak about their professional and personal experiences of CFS - both these doctors suffer from CFS themselves. Broadcasting a critique of Professor Showalter’s book by someone who is medically qualified would also be very interesting - every argument has two sides, and so far we have only heard one. As it happens, this piece left CFS sufferers on a dumping ground, encouraged to believe that their problems are entirely mental - indeed hysterical - which doesn’t match my own experiences. I would at least hope that you could offer replies to my particular concerns outlined above. I would also be interested in a cassette tape or transcript of the programme segment if it was available - as it is, I have had to rely on my poor memory to write this response.

I am quite happy for any part of this message to be made public or broadcast (my contact details are at the end of this email). I would also appreciate if a copy could be passed to Ms Showalter. Discussion between interested people is the main way that thinking in any area progresses.

Thankyou for your time,

Yours sincerely,

David Wood
(my address and phone numbers followed)

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