Tuesday, 25 November 2008

Are we talking about the same book?

I used to be guilty of thinking that unless other people with ME were as ill or more ill than me, then they didn't really have ME. I try very hard not to think like this anymore, but sometimes I slip up, and think, Nah, that person doesn't have ME, they have some other much less disabling illness. This is hugely unfair to the other person, who could genuinely have a milder form of neurological ME (ie. not CFS). I was very aware in writing my book that Helen Fleet, the main character, would not reflect the experiences of those who tragically have ongoing severe ME, those unfortunate enough to never make any kind of headway (approx. 25% of sufferers). I used the minor character Fizza to demonstrate that some people are stuck in this hell, seemingly, forever. The aim of the novel was to educate people that ME is a serious neurological illness and not the same as CFS - chronic fatigue syndrome - which is a dustbin diagnosis invented by psychiatrists to amuse themselves with and label patients who have vague, unexplained symptoms of fatigue. It is driven home over and over in my book that ME is not CFS. And I was meticulous in my research - trying to capture the way that ME was described from 1983-1998, the first fifteen years of my own illness, as well as Helen's. I sweated over the details and was desperate to get the horror of the illness across without self-pity. I re-read the ME bible, Dr Melvin Ramsay's The Saga of Royal Free Disease, which I have owned since 1986 (and refer to in the novel); I consulted the successor to the neurologist who had treated me. In my author's note, I lambast the treacherous NICE guidelines. As I have already said, I was happy and relieved when the ME Association recently described the book as 'word perfect on neurological ME'.

Today, I came across a review on Amazon USA, which, while it greatly admires the writing, is pretty scathing about 'my lack of research and knowledge of ME' (personally, I think 25 yrs of having the illness fuck up my life gives me plenty of facts). This review claims that I am describing CFS and not ME - I can't help wondering if we are talking about the same book. It seems that the reader has almost wilfully missed the point. I would like to emphasise that I would never react in this way to a negative review of any other aspect of the book, it is purely subjective whether a book is any good or not, but to suggest I was lazy in research, failing to consult reputable/factual medical sources is untrue and grossly unfair. I have presented the facts - in the context of a novel - as they were presented to us in the 80s and 90s. If you want a textbook on every clinical detail of ME, this is not the book to read. The fact is that I cannot tell everyone's story.

Update* The original review has now been edited - I guess in response to this post - so in fairness I have removed that review (which most of the comments on this thread originally referred to) and replaced with the revised one. The harshness has been mellowed, the reviewer explains herself more - however, I still find parts of it utterly baffling. In spite of my 'very positive intent' my novel could apparently 'do more harm than good'. I still ask myself if we are talking about the same book.

Update ** This review has actually been changed again, I can't keep up, so I suggest you go to Amazon USA to see the latest.

Update *** I came across this today, July 2010. My novel - with the title mispelled, The State of ME not the The State of Me - is patronisingly, and dishonestly, referred to as a 'novel that mentions ME' (and unsurprisingly 'not recommended'). One really has to wonder what goes through this young woman's head.

38 comments:

petal47 said...

That reads more like a personal attack than a review, Nasim. I can't count how many people I've met who have claimed to have ME erroneously, or conflated it with CFS. Even my mother-in-law (who is a horrendous hypochondiac) says "oh, yes, I've had that". I try not to get angry about ME-related issues - too much wasted time - but this makes me boil with indignant rage on your behalf.

nmj said...

hey petal, the review was written by a young woman who is horribly ill with ME, and while i have huge sadness for her that she remains so ill, i figure this is perhaps why she is so dismissive of helen's (and my own, really) experience... i have thought about this all day, i feel offended academically & intellectually - the suggestion that i would be sloppy about such a very serious subject... she seems to be saying, yeah, read the book if you can ignore all the ME info - the whole point of the book is to inform, and i know i have done a bloody good job from the rest of the feedback i get - but it is wounding when someone accuses you of laziness & halfhearted research, that's why i have blogged it... it is just not possible to tell everyone's story, but in telling helen fleet's i have surely told the truth? maybe i have over-reacted, i wasn't sure whether to post or not, but feel better for doing so. x

Susan said...

Congratulations first of all on her praise of your storytelling and writing: because she does seem hard to please!

I've met other people too, who think that their personal experience with a disease, from cancer to migraines, is the definitive one or even the only one. Weird but we can't change it.

I'm very very glad that you got the ME Association's response first. Heaven knows that review has far more weight than just another Amazon reviewer.

Cusp said...

You were right to post. The book does do a very good job of informing people about what it is like to live with M.E. and it does differentiate between CFS and M.E. because it IS grounded in good research -- both personal experience and academic reserach.

Knowing you there's no way on God's Earth (or any other diety's) that you would have allowed it to be published unless you knew it was 'sound.' Remember all the other people who have praised the book -- and that includes all the other people with M.E.

Maybe Jodi isn't as fulsome in her praise because it isn't the book she would have written... but then she hasn't tried, has she.

nmj said...

hey susan, i think also some PWME, no matter how severely ill, don't really get what it was like to be diagnosed in the early 8os, there was an absolute paucity of information... i wanted to describe how little was known then - it is easy now to look up a thousand sites on the internet & there is access to the latest research, but we - as patients - had virtually NOTHING, I would read medical textbooks frantically in the library - if I was well enough to go. It was hellish, but this has somehow all been overlooked by the reviewer when she considers helen.

thanks, dear cusp, for your support. i hate that i have felt i have to defend myself, but i am not one to be trodden on! it would just be a shame if her review turned away a potential reader with severe ME, who thought they might be misrepresented... okay, i need to go and cook and rest from this!

Cusp said...

Bon Appetit ;0)

Reading the Signs said...

Nasim, I have appreciated the work that has gone into the Hummingbird site but I think she takes an extreme position - understandable and one needs people with sufficient passion to get the seriousness of it across - but people who take extreme positions can fall into rigidity.

What you have produced is a work of art. In other words it represents true experience but it shouldn't be expected to deliver what might be found in a non-fiction, factual book. One of the elements that make the writing good is that it feels "true" - to this afflicted reader, at any rate, and I know to so many others.

I actually don't like the whole amazon star-rating business, it can be very misleading.

It's an easy thing to say but - try not to take this comment to heart. Remember all that others have said.

trousers said...

I just hope that the reviewer will see this site and the ME Association's comments and endorsements too, and that it might just help to inform her and give her a different and wider perspective than the one she perhaps currently has.

It can't be easy having to face up to things like this, and I agree with a great deal of what's been said in this thread: not least that you were absolutely right to post this.

nmj said...

Hey Signs, Thanks for this. I don't honestly go to the hummingbird site v often so can't comment, but I know there is a wealth of information on neurological ME.

I think I feel aggrieved on two counts:

1)as I said, feeling I am being insulted intellectually for my lack of research;

2) implying my/Helen's experience of ME is not valid, which is insane!

She seems to almost want to distort the message of the book! We are on the same side for godsake!

I don't know if she knows that I have ME, she gives no indication of doing so - does she think I *imagined* what it's like? Give me a break! I started off severe and became moderate. I feel lucky to be moderate these days but am still pretty stymied in many ways.

Anyway, I prob shouldn't need to justify myself/ the book - the work speaks for itself! I guess I can't control how people interpret the book.

And she does love the writing, so that's something, it's just a shame she felt the need to attack the integrity of my research. Even if she'd said she doesn't think it goes far enough in defining the illness in clinical terms, I could have gone with that, although there is enough detail in the narrative as far as I am concerned, but to denounce my research/sources in such a cavalier way is not v impressive.

nmj said...

You snuck in, Trews. The ME fight has become so political, a direct result of the lack of belief and manipulation of power by the medics/government over the years. There are many ME groups now, different agendas, power struggles, we are supposed to all be on the same side, but it doesn't always work out that way. I stay well clear of the in-fighting. My position on the illness remains informed by my experience of it, but I try to respect that others may not have the exact same experience. An endorsement by ME Assoc, while meaningful to me, may not be meaningful to someone else, but I am so happy they have 'adopted' the book, it means they respect it and think it worthwhile. Invest in ME and MEResearchUK have also to date endorsed it.

iLL Man said...

Wouldn't worry about it. I think the answer to her review can be found in your opening paragraph.

nmj said...

Ill man, Nice to see you, I like your sound west coast advice!

Stray said...

Hey nmj, our blood boiled when we read that.

As others have said, she's full of superlatives on her hummingbird site and appears to find overstating her case to be a useful communication technique generally.

I feel aggrieved on your behalf. It's like saying that if you're not dying of an asthma attack then you don't have asthma and don't know anything about it. I think she must have read a different book or simply wasn't able to make the leap required to allow Helen to exist in the 80s / 90s instead of today.

As you say, you can't tell everyone's story. When I made the self harm film the reviewers kept pointing out specific experiences I wasn't covering - I could only tell a limited number of stories. I felt like shoving a notice on screen saying "Other forms of self harm are also available from your local pharmacy." ! Perhaps she'd like you to put a sticker on the book saying that you don't pretend to have told the experience of every ME sufferer ...? Or maybe the rest of the world is capable of reaching that understanding unaided!

petal47 said...

I used to run a support group but we ran out of steam. I was disturbed by the way sufferers were inclined to compete - many simply assumed that 'they had it worst' and others were merely playing at it. Its common symptoms have a very individual effect, I often find; two sufferers can often describe quite different experiences yet still both have ME.I can't see how anyone can claim that your experience is any less valid than anyone else's. And you weren't writing a textbook.

nmj said...

Thanks, Stray & Petal. I remain confounded after a very bad night's sleep, and wonder if she even read chapter 17 (FAQs), for example. I think PWME tend to claim ownership of the illness because they have had such a crap time of not being listened to by medics, have to counteract all the nonsense in the media, so of course can get quite military and angry - that's what TSoM is all about. Helen is so angry most of the time! There is also the possibility that the reviewer didn't get that my referring constantly to ME as 'the mystery illness' or 'blah-de-blah-de-blah' was tongue in cheek. I had to edit out a fair bit of medical stuff cos it would have been so damned boring in the context of a novel. Still, I am confident I got the important stuff across.

Cusp said...

I do hope you can find some sense of peace with all this soon. That gnawing indignation will only make you feel worse and sap valuable energy and resources.

I think that when you try to create something from an Arts perspective about a contentious subject like M.E. you will always bring extreme views to the fore. Stray has had similar experiences in making the film about self harm and I had similar experienecs when I made an arts-based CD Rom about Alzheimer's for the County Library Service --- cue whingey voice:

'Why didn't you mention this/that/x/y/z/'.

You just cannot please everybody and certainly not in the case of a condition like M.E. where every utterance by an individual,a clinician, politician has to be clarified, justified, explained, apologised for. In a way maybe Jodi's comments back up one of the themes of TSOM in that Helen's illness was surrounded by a mire of debate, mystery and controversy and it shows that nothing much has changed since the 80s. There are still all sorts of vies and opinions about M.E. and almost nothing has been resolved. God...I've apparently had M.E. since 1973 and was only diagnosed in 2001 so where does that leave me as an example of a PWME slithering in this mire ? I spent years being told I was every kind of hypochondriac to anxiety ridden neurotic and then when I did get a diagnosis I still ahd a million different pieces of advice to deal with ---- and most of it was nonsense.

As you say the whole' M.E. Community' is racked (and wrecked) with controversy and in-fighting. You only have to look at some of the online (so-called) support groups and activist groups to witness the most immature, petty and pitiful in-fighting. It gets those individuals no-where and does nothing for the general reputation of PWME: just backs up the idea that we're a bunch of crazy depressives who should get up off our backsides and stop snivelling.

Your book gives a clear account of the ordinary life of an 'average' PWME and is far more likely to reach a wide readership. In doing so it has far greater potential to inform and enlighten the 'man in the street' and thereby change attitudes. It's a general change in attitude we need first...the attitude of ordinary people. Then there might be a chance that they will have some empathy for and support PWME in their struggle to affect change in policy and medical care. That is more important amd effective than any obscure, elitist website, campaign or group that most people have never heard of and don't want to know about.

Have faith and feel proud.

nmj said...

Thanks, Cusp. Yes, I think Helen's story, pretty much bedridden and housebound for six years, making painfully slow progress, tiny steps, before she gets back to uni for one class a week is fairly instructive to the public about the grimness of the condition... I have dipped into Hummingbird website since her Amazon comments, it honestly seems like a good guide - a bit controlling though - and we are essentially saying the same things. Perhaps there is more to her bizarre review than meets the eyes, maybe I am not affiliated with the right groups? Who the hell knows!

Amy said...

Hey Nasim, I just want to express my support for you and your book. As you know, I have severe ME and have been ill for many years, and I totally disagree with this review of TSoM. I think you are right to say that Helen's experiences don't totally reflect or describe every aspect of ongoing severe ME, but that's just fine, because this book is a novel about one person's particular story. There was so much in the book that i did recognise and identify with, in terms of ME, but also I was drawn in to the life of the character. As you say, it isn't a textbook. But it is very clearly about neurological ME, and I think you very successfully got a lot of good points across, whilst still ultimately writing a great novel.
I'd like to say more, more eloquently, but basically I'm sending support on this matter! Hope you can get some rest... xx

nmj said...

Amy, Thanks so much for your support. You are the voice of reason! x

ME Association said...

Hi Nasim

If it's any comfort, I wrote that review in the ME Association mag and I stand by every word. Helen has neurological ME, triggered by that bloody coxsackie virus. Your account of her illness could serve just as well if the book had 2008 as its start point because unfortunately little has changed in the past 20 years. Believe me, people with neurological ME can improve and even recover their health. We know many who do. Quite understandly, most then beat a hasty departure from the world of sickness. One lady – another Scot – who greatly influenced the my career when I joined the ME Association still has Cocksackie-triggered ME. She has never got wholly better but, once she got over the hellish acute phase at the start, she developed coping strategies to help her enjoy life again. She had to give up driving but but developed an encyclopaedic knowledge of coach timetables – travelling to meetings round the UK from her home in the Hebrides by ferry and bus and always arriving in plenty of time. I believe she still has to pace her activity to keep within her energy levels. Helen Fleet and this lady would have hit it off well. I won't slag off other reviewers – not my style – but take the bad one with a wee pinch of salt, and a toast in something delightfully alcoholic to the future. Some reviewers get it wrong, but not this one. Slange var! Tony at the ME Association

nmj said...

Tony, Thanks for your lovely comment - it is much appreciated! I have probably been more upset by this Amazon review than I should have been, but when someone speaks with such 'authority', and blatant disregard for my experience of ME, it is peeving as hell. But I will get over it.

That's So Pants said...

Hi NMJ

I don't have much time (public library access only at present) but I wanted to send my support. Clearly the reader wasn't reading the book you wrote, rather failing to locate the one she wanted to read.

xxx

Pants

Mellifluous Dark said...

I give that reviewer 2/10 for grasping the heart and soul of TSoM.

It's plainly rubbish that you didn't do your homework. My first thought was that that review was written by someone far younger who has come to know ME at a stage in their life where more was known.

I can sense and understand your anger, though, and share it with you. It's galling when the essence of what you have said so well is glossed over. Bizarre.

x

Igotmebabe said...

I am astounded that someone suffering from "ME" could have written that Amazon review. As you have said it is almost as if she is talking about a different book.
I could blow a fuse on your behalf.
TSOM as well as being a marvellous novel paints the picture of life with ME in a way that only a informed and knowledgable sufferer could write,warts and all. I was particularly delighted that it clearly showed the differences betweem ME and CFS. Also diagnosed in the 80's I can't count the number of times whilst reading your book that I said "thats me". I disagree strongly with the reviewers comments about it being a book she would not reccomend to family or friends as a book to promote understanding. My experience of this has been the complete opposite. After reading it my two daughters were in tears and said they had not understood just how bad it could be.
Its hard not to get angry at this review but,strangely, she seems to contradict herself in many places, how can she write "to tell this story so well is a real achievement" followed by "It really was very poorly researched and almost entirely inaccurate" Like everyone she is entitled to her opinion but comments like that are confusing to the reader.
I would also say that it seemed more like a personal attack which is disturbing.
Don't let it take anything away from the wonderful thing you have done by writing this novel.
You don't know me, I don't know you, but we both have the same illness "Neurological ME" that much is very clear
Take care
Janette

Reading the Signs said...

What a lovely comment from your M.E. Association reviewer. It is important for the rest of us also - those who have read your book and identify - to know that we are not being dismissed as somehow not being the Real Thing.

I never really understood what triggered my M.E. A sore throat that lots of people had but recovered from. And a slow build-up previous to that of weird immune-dysfunctiony things. I still sometimes feel as though I'm walking in the dark with it. I really want to take some hope from what Tony said about possibility of recovery.

Hope today is brighter for you.

nmj said...

Hey Pants, You have said it in a nutshell. Helen's story is not Ms H's story so she feels it is not quite valid! Helen is severely ill for the first third of the book, but because she makes some kind of recovery, Ms H seems to think this negates what she has suffered before, and what she continues to suffer. x

Hey Mell, Thanks - I would bever use the I'm older than you card, I know better - Christ I'd be turning into my granny - what I mean is I lived through ME in the 8os, I know exactly what the climate was like, Ms H can never know the utter confusion/lack of knowledge we faced. This is what I was weaving into the narrative.x

Hey & thank you, Igotmebabe, You have said exactly what my mother has said, this review is *full* of contradictions, and by trashing my credibility Ms H is actually denting her own. If she were an anonymous reviewer this would have felt far less serious, but she has appointed herself as a huge authority on ME, her website, brilliantly informative in some ways, is, I think, a dangerous mix of medical fact and her opinion.

Thank you, all, again for your support. If anyone has time/inclination/energy would be great if you want to post reviews on Amazon USA to say what you've been saying here. It really would be a shame if people missed out on the book cos of Ms H's very odd review.

nmj said...

Hey Signs, I am trying to let go of my anger, but it keeps flaring up again, but blogging has helped enormously! x

trousers said...

For this thread, I wish there was a "recommend this comment" button like there is on (say) the Guardian or BBC sites - all of the above comments would get a "recommend" click from me.

Incidentally, word ver = "novell"

nmj said...

Trews, I love the word ver... it's like a kindly nod from Blogger.

Susan said...

It's like being a battered wife, no-one else sees that person (this illness) the way you do and his friends (non-sufferers) will never believe that he is the way you see him. The more you try to tell them the more they need to believe their version of the truth. Don't worry, you know the truth and I admire you for even trying to educate them.

Susan said...

I was not diagnosed until 1990 but my first major collapse was in 1983 so in fact you're doing better than me. I believe I have always had these problems, they just finally found a name for it! Sadly "normal" healthy people find it impossible to accept that you haven't "fixed" yourself in all that time. They really believe that if it was them they wd have found a cure so you obviously enjoy being this way and don't want to be cured. What a lovely world they manage to live in eh?

nmj said...

Thanks, Susan.

I feel I should say that I got a long email from Jodi today, she feels that she is being personally abused on this blog thread and has asked me to take the post down. Of course, I would NEVER allow personal abuse of anyone on my blog, & all the above people are doing is expressing their opinions on her opinion of TSoM. She also apologises if she came over as not believing I have neuro ME. I think her main problem with the book is I am presenting the facts as they were known in 80s/90s and she thinks I am actually harming the ME movement.

I am fairly sure that no one would read this book and come away thinking that ME and CFS are the same illness.

I hate that I have been dragged into this kind of debate with another ME sufferer, but it was inevitable, I guess.

nmj said...

Okay, I see the original article has been edited.

http://tinyurl.com/5wkmg8

I think Jodi has made real effort (assuming she doesn't change it again), she is now respectful of my own experience of illness, but she remains adamant that I am not describing ME clearly enough in its severity. Apparently, my character is not much more than tired all the time. (I am truly SO baffled by this).

She also obviously still cannot get her head round this being a novel and not a clinical tome.

I would probably have applauded her edits had she not ended with I'd recommend this book only to educated M.E. patients who can perhaps still enjoy the good parts of the writing while ignoring all the medical/political information in the book. In anyone else's hands, unfortunately, the book may do more harm than good most likely.

I fail to see how my novel could harm anyone. The real problem of course is that I am supping with the devil, in that I have respect for an organisation she doesn't.

How can such militancy about a work of fiction benefit anyone?

McBöbø said...

Sorry I haven't been paying attention to this. I find myself being very annoyed for you by this saga, and sad that people who ought to be the most supportive often succumb to the temptation to squabble.

nmj said...

Hey Bobo, I just get so tired of the politics of this illness. Jodi & I will have to agree to differ on certain aspects of my novel. As I've said it was inevitable I'd get dragged into the militancy at some point - I've spent the last 25 yrs fighting in some way or other for recognition of my illness, and my novel is my ultimate weapon. I remain happy that the rest of the reviews - from people with various degrees of ME, from parents/carers of PWME, from readers who didn't know a damn thing about it - have been pretty glowing. I think most readers will be discerning enough to see that this novel captures a specific period in time, and is not a 2008 guide to every symptom/fact we now know about the illness. Also, I think Jodi - whose attemps to edit the review I do very much appreciate - she didn't have to - doesn't perhaps realise that a novel requires something more sophisticated than a list of symptoms on every page. At one point, an editor asked me to take some of the clinical stuff out, and I refused cos it was so important to leave it in. Anyway, enough, I am really so frazzled by all of this!

Mellifluous Dark said...

"How can such militancy about a work of fiction benefit anyone?"

Exactly, NMJ. EXACTLY!

x

Igotmebabe said...

So you are harming the "ME Movement" What a load of codswallop ! In my experience it has not moved on in any significant way since the 80's and in some ways it has actually got worse. Only my oppinion and not a personal abuse on anyone
Janette

nmj said...

Just to put a line under this: Jodi and I have had a few conciliatory (I hope) emails - my view is that essentially we are telling the same story - her on her website, me in my novel - but her frustration comes from her failure to contextualise The State of Me. It is upsetting for all concerned when things get so heated, but unfortunately the ME debate is and continues to be highly emotive.