Monday, 18 July 2011

Storytelling (2)

Truly disheartening to see 'chronic fatigue syndrome' - unforgivably and ignorantly - referenced as a modern form of hysteria by Asti Hustvedt in her book Medical Muses - this from Guardian reviewer:

This turns Hustvedt's book into a study of how the diagnosis of illness can be chosen, a negotiation between doctor and patient. With a nod to contemporary life, Hustvedt points out that "no drug exists to cure anorexia, bulimia, self-mutilation, chronic fatigue syndrome and multiple personality disorder and no genetic flaw has been found to explain them. Furthermore, as was true for hysteria, these contemporary disorders are thought to be contagious, spread by suggestion, imitation and therapy."

It would appear she needed some juicy 21st century illnesses to compare to late 19th century 'hysteria', and lazy googling led her to believe that 'chronic fatigue syndrome' fits the bill. Of course, one is immediately reminded of the dreadful Elaine Showalter. A shame she (Hustvedt) hadn't been more diligent in her research, her book sounds like it might have been interesting, but this juxtaposition of chronic fatigue syndrome with anorexia and self-mutilation and multiple personality disorder is simply alarming.

More here.

It also made me think of the novel The Story of Marie and Blanche by Per Olov Enquist, about which I wrote a few lines a few years ago. Am sure certain medics (and a certain academic) would still love to get out the ovarian compressors for women with ME. Maybe the NICE guidelines can add the compressors to CBT and GET?


nmj said...

I only realised that Asti is sister of Siri Hustvedt.

Amy said...

Truly horrendous, lazy research must have gone into that book as you say.

I'm sick of ME being kicked about for psychosocial "debate" by academics who have no medical knowledge.

Another thing which struck me in the section you quote here is that not only do we now know that there is indeed a genetic component to ME, but we don't necessarily know that there aren't genetic components to the mental illnesses which she lumped ME in with. Assumption presented as fact.

Wish I'd said that in my comment.

nmj said...

From the Telegraph review: The most arresting material in the book appears as an afterthought, in an epilogue suggested by Hustvedt’s publisher. Here Hustvedt explores the relevance of Charcot’s work to such 21st-century hysteria analogues as chronic fatigue and Gulf War syndromes, tangible sets of symptoms for which there are no clear biomarkers. She points out that in an age where “it is no longer acceptable to argue that women are inherently unstable and predisposed to illness”, explanations of these syndromes tend towards scepticism or even dismissal.

What is alarming is that reviewers are so easily led, colluding with the writer in believing - still, in 2011 - that CFS is a 21st century 'hysteria analogue'.

Cusp said...

'....not only do we now know that there is indeed a genetic component to ME, but we don't necessarily know that there aren't genetic components to the mental illnesses which she lumped ME in with' : quite right Amy. There is a lot of research that shows a genetic component to anorexia and bulimia but then of course thats another condition that's been 'dumbed down' and explained simplsitically as being about people wanting to look like skiiny models in mags.

Thought that with that surname Asti was prob related to Siri, Have you read 'The Shaking Woman' : turgid and dense

nmj said...

And according to Telegraph, her publisher wanted to 'sex' up her book, bring it into a modern context - nothing inherently wrong with that, but to choose chronic fatigue syndrome as an example to tag on is just lazy - and histrionic - one might add. Also, at some point in the process an editor has endorsed Hustvedt's words - not questioned the current state of affairs of research around ME/CFS. It is very hard to believe that any academic on the planet is not aware that there is at least a robust 'debate' about ME - it's far too simplistic and easy to just lump it in with 'hysteria analogues'. And she lives in USA, has the XMRV question totally passed her by?

nmj said...

Cusp, I started a Siri novel once but couldn't finish it.

nmj said...

Just to add: I have gleaned from reading other comments that Hustvedt is sympathetic to the 'hysterical' syndromes in 19th C, and that she believes that illness that has no biomarkers is just as 'real' - and deserving of compassion - as illness that does. And we cannot pretend that in the past we have not been dismissed as hysterical women (or men); but research has come a long way - even if we don't have biomarkers -and what bothers me is that Hustvedt - and some reviewers - appear blissfully unaware of any biomedical research being in existence. It is the casual way she has lumped CFS in with a list of mental illnesses, with no acknowledgement of the global research that is actually going on to discover the pathology... It seems very 1980s. Someone should send her a link to the NIH workshop that took place in May.