Wednesday, 13 May 2009

Apparently I am a 'militant ME politico', probably mad...

Lovely. I woke up to find myself described as 'a militant ME politico', and suggestions that I am mad'.

An opportunist who just wants to plug her book.

All because I had left a comment on a Facebook site, supporting a young man with ME who has been sectioned. I was reluctant to blog about Brian until I knew more about the case. Of course I had no idea that my comment of support would be abbreviated and pasted on Dr Crippen's blog the next day in an attempt to misrepresent me.

Thanks to those of you who alerted me.

My original comment on the Facebook site was:
I have just read about Brian Nicholson on a friend's blog. This is APPALLING and INHUMANE. Where can I read more about Brian's plight? What more can we do to support him?... I continue to be disgusted and horrified at the 'delusional beliefs' of certain medics that ME is not a neurological illness. Are we all to be sent to a metaphorical Guantanamo??? I am so very weary of this culture of non-belief. I have had virally-induced ME for 25 years, I am the author of 'The State of Me', a novel about a young woman with ME.

Abbreviated by Dr Crippen to:
This is APPALLING and INHUMANE. Where can I read more about Brian's plight? What more can we do to support him? I have had virally-induced ME for 25 years, I am the author of 'The State of Me', a novel about a young woman with ME.

Dr Crippen says of the Brian situation: ...a golden opportunity for the ME politicos, Nasim is in already, plugging her book... It's a shame. Brian Nicholoson's best interests will not be served by this blinkered, agit-prop, self-publicising lunacy... It is an even bigger shame that the activities of people like Teacher/nurse and Nasim and Andrea only end up in all ME sufferers being labelled as mad.

This offends me in the extreme.

And if I mention my book in an ME commentary thread it is because it gives me a sense of 'status' and credibility in the face of so many years of crap and disbelief - why should I not? Dr Crippen blogs and comments as a doctor and that gives him status. I blog and comment as someone who has had ME for 25 years, and the author of The State of Me. What is the difference? I have left a response on his blog, but I was unsure whether to bother. It's all so exhausting and unpleasant to be in these bizarre firing squads.

Greenwords' words of yesterday could not be more apt.

Update* Dr Crippen has since commented below. For those who don't know, he has in the past been pretty hostile about ME sufferers, but these days, persuaded by the many emails he has received, concedes 'some of us are physically ill'. His preoccupation seems to be with 'those who are mentally ill, but march under the ME banner'. And 'the militant wing of the ME movement'. Interestingly, Dr Crippen has now bought my book, I truly hope it adds to his understanding of this wretched illness.

Update** Dr Crippen took his blog down in March 2010.


Mim said...

Shocking! I believe that the health insurers, at least in the States, do not want to recognize ME because they do not want to pay for treatment.

Rick said...

Re: the abbreviated comment: It's troubling that there was no attempt to at least insert an ellipsis. For a missing chunk that big, I'd go for the full editorial "[...]" with line breaks, but that's just me. Presenting it as a complete quote is misleading, at the very least.

This probably won't cheer you up much, but remember, it's only a disagreeable person with a blog...

Reading the Signs said...

It's enough to make one want to be a "militant ME politico" - good that you raised your voice.

nmj said...

Hey Mim, It is a mess, the whole scene, is a mess.

Hey Rick, 'Dr Crippen' is a GP with a huge blog following in this country - I would usually avoid this kind of online conflict, it is too harrowing, but I felt I was being unfairly attacked and had to defend myself. We exhanged a couple of comments, he has said he has ordered my book, so that can only be a good thing.

nmj said...

hey signs, you snuck in there...yes, i felt i had to speak up, but it is also a little scary when you are speaking under your real name.

trousers said...

Well I had a look at the article and some of the comments...I found myself getting wound up all too quickly.

Apart from wishing more strength to you, that's all I'll say for fear of getting wound up further.

Cusp said...

Well good for you for biting the bullet and standing up to the vile Dr. Crippen. I do think there may be a whole lot more to the case of Brian than we know at the moment but I salute you in ticking Dr C off and pointing out the error of his ways. As usual he only posts what suits him.

trousers said...

Well despite my previous comment I went back. Problem here is that since I don't know enough about the original situation in question, then it's difficult to comment on that: but the question posed by the title - Can people with ME be mentally ill? is a perfectly reasonable one in itself, if the intended meaning is Can a physical illness such as ME be present in a person with a mental health problem?He also raises some interesting questions. What I don't like is the way he has then used it to discuss the "militant ME brigade" and thus seemingly to tar many sufferers with the same pretty extreme brush, despite later suggesting that it's a small number of ME sufferers who are responsible for the maligning (as being mad) of the bulk of ME sufferers.

So: at best, a missed opportunity for some interesting questions to be discussed (albeit related to a case of which I'm ignorant), but it's unleashed yet another chaotic discussion with many ignorant voices being raised.

Amy said...

I agree with trousers' comment about the "chaotic discussion with many ignorant voices being raised". I have seen previous discussions of the issues surrounding ME on Dr Crippen's blog, where the level of vitriol expresed towards those diagnosed with ME is astounding and disturbing (and not particularly suggestive of sound reasoning and/or mental stability on the part of those who spew it out either...)

I'm glad you felt able to enter such an environment to stand up for yourself Nasim. All power to you.

nmj said...

Thank you, all, for your comments.

Of course people with ME can develop mental health problems, just as someone with MS can, just as anyone can... I do not know enough about the Brian case to know if he has a mental health problem in addition to having ME.

The problem is that when we hear of a young person with ME being sectioned it is horrifying because of what has gone on before.Dr Crippen used to not believe in ME at all, he was hostile and rude on his blog, though he appeared to do an about turn a couple of years ago. Now he concedes some of us *are* physically ill.

His concern seems to be that 'propagandists' like myself are harming this young man - yes, my one supportive Facebook comment is going to impact catastrophically - by seeking to deny him the psychiatric care he needs. Dr Crippen says:

A golden opportunity for the ME politicos, Nasim is in there... It's a shame. Brian Nicholoson's best interests will not be served by this blinkered, agit-prop, self-publicising lunacy... It is an even bigger shame that the activities of people like Teacher/nurse and Nasim and Andrea only end up in all ME sufferers being labelled as mad.These are the comments that offended me hugely (and the fact he shortened my original comment, manipulated it). Dr Crippen made them with no thought at all of how I might be affected. I really would prefer not to have had today taken up by defending myself. I hate these threads, they end up like abusive pantomimes, the chorus of the the psychosocials against the biomedicals, it is so fucking wearing.

I refuse to waste energy shouting at Dr Crippen that my illness is 'physical' - I know it is - but I do feel the need to defend myself against such bizarre and hostile criticism.

I sincerely hope that Brian gets the best care possible, but my heart sinks to think of someone with ME being in a psychiatric ward. What views on ME will the staff hold? What prejudices?

I have an illness that has wrecked my life, I have written a novel about it. That is all. I support others with ME when I can. I am not an irrational militant, 'a self-promoting lunatic', all of which Dr Crippen strongly implies. He knows nothing about me, my life.

Why is there no 'cancer brigade', no 'lupis brigade', no' MS brigade'? Why is 'ME brigade' used so derogatively?

Because of a deluded core in the medical profession, and its completely incompetent way of dealing with ME.

Yes, some people with mental health problems are being diagnosed with ME when that is clearly what they do not have. That is hardly the fault of those of us who *do* have neurological ME.

Today, I think of the elderly consultant physician, a colleague of my dad's, who told me in 1983: When doctors don't know what's wrong they blame the patient.

Anonymous said...

Oh! Heavens, Nasim, no firing squad.

But you can't deny that you took the opportunity to plug your book on Facebook. And it worked, because I have bought a copy, so that is one sale at least. Amazon tell me it has been despatched already so I should have it tomorrow. I will review it.

I didn't say you are mad, by the way. I DO think that the militant way many people who are labelled as having ME behave IS mad (in a general, not a psychiatric, sense) and that is a great shame as it diverts attention away from the ME sufferers who have a genuine physical illness. And, yes, I do believe that some people with ME have a genuine and undiagnosed physical illness. I also believe that many who march under the ME banner are suffering from psychiatric problems but are not prepared to admit it. For them, there is little hope.

I know you won't like that. But remember that first, I am being open and honest and saying it to your face and not behind your back and second, unlike many doctors I do NOT think that ALL people with ME are psychiartrically ill.

It's a shame that more of you are not prepared to engage in rational discussion.

I'll report back on the book


nmj said...

Hello John, I am kind of surprised to see you here, but thank you for coming by.

I did not go to this FB site with the intention of promoting my book, which is very much what you suggested on your blog, in a rather cavalier manner. I joined the group to protest against the sectioning of a young man with ME. (FYI I am in precisely 3 groups, one about Gaza, two about ME). I am no group junkie. I did feel a little uneasy commenting on a case I know little about, but as I said above, it is horrifying to think of anyone with ME being in a psychiatric ward (if they have what I understand as ME).

I have nowhere denied that I 'promoted' my book on the Facebook site, but I didn't realise this was a crime. This really seems to have got to you, I don't understand why.

As I have already explained over at yours, my book is extremely relevant to discussions about ME, and it is natural I mention it. It is my weapon against the non-believers.

It doesn't honestly matter to me whether you believe that ME is physical or not, I know it is. I was diagnosed by a consultant neurologist in 1983, after a very frightening year of illness, triggered by Coxsackie B4 virus. I had never heard of ME or Coxsackie at this point.

I do not deny that people with ME can develop mental health probs.

Nether do I deny there are people running around saying they have ME, when they don't. They cause us much grief.

But most of us who claim to actually do have this goddamn neurological illness, and we are doing the best we can to get on with things, but find ourselves hijacked constantly by nonsense and disbelief. That is why we constantly have to shout and scream, so that the truth can be heard.

Still, I came to your blog not to shout that my illness is real, but to defend myself against your assertions abut me. You don't know me at all, but this did not stop you from projecting your anger at 'the militant wing of the ME brigade' on to me and Andrea and the teacher who is trying to help Brian.

I wish I could convey to you how upsetting it is to see the vitriol expressed over and over towards those of us who are genuinely ill. I do usually avoid those kind of comment threads. They scare the hell out of me.

I left my original comment on a FB site that has 140 odd members, probably read by a few hundred people, and you took it and abbreviated it - manipulated it- and plastered it on your own blog, which I know has many many readers. Ironically, you gave my book much more exposure than it would have got.

I do hope you enjoy the book and that you learn something about what it is like to live with ME. You are a doctor, John, please always remember how much influence your words might have.


Reading the Signs said...

Hi Dr. Crippen - I remember the old days when, as a feminist, it was enough to simply stick one's head above the parapet to be called a bra-burning "militant" and it went without saying that if you were one of those you were either dangerous or not to be taken seriously. Lucky for the rest of us that some women kept fighting.

Lucky for the rest of us that some PWME choose to speak up and speak out. I am a veteran (yes, diagnosed) who has had M.E for 22 years and never felt able to do more than keep on bleating in the face of hostility and disrespect. God forbid I should make things worse by seeming to be "militant".

It's a shame that more of you are not prepared to engage in rational discussion. - who is the "more of you" that you refer to? Are all PWME tarred with the brush of irrationality?

The problem is, Doctor, that sooner or later one becomes enraged. Were that not so then we would really be in danger of becoming mad and disconnected.

Well - lots more to say, I'm sure. But tired now.

Nasim? Hello x

(word ver is pantinge)

Cusp said...

Well Nasim, you are honoured: a visit from the good Dr C himself !

It has to be said that when all the hoohah has died down there is, I think, some truth on both sides: there are those of us who have been properly diagnosed, suffered for years(35 years if you read this Dr C.), put up with the taunts, the slights and the disbelief and are now at the end of their rope with the whole business and quite likely to become justifiably 'enraged' as Signs puts it. We become all the more enraged when it appears or is insinuated that all people with a M.E. diagnosis should be tarred with the 'yuppie flu/neurotic/depressed/attention seeking/workshy/' brush.

Undoubtedly too there are people who say 'I've got M.E.' and are self-diagnosed. They often do not have the faintest idea about what M.E. really is. They are often the people who have such great success with all the new wonder treatments that abound at the moment (we all know which ones). Lump this all in with the fact that, generally, a diagnosis of M.E. is a diag. of exclusion for a condition that is just not properly understood or researched and you have a situation where people who have that diagnosis are easy meat for all sorts of speculation and prejudice and even professional undermining from self-promoting Psyches like Dr Weasle. It's the makings for a real dog's breakfast.

The hardest part for PWME (real, proper M.E. ----and even that's hard to define since, IMO, 'M.E.' encompasses a range of infections which result in a simlar group of symptoms) is the sheer vitriol and nastiness of some people on blogs such as Dr C's. Whatever the reason for PWME's suffering , they (we) are suffering ....badly..and that suffering is made all the more painful by lack of understanding or belief or proper research. All the 'treatment plans' seem to be smoke and mirrors and cooked up by some self-interested group. There's nothing solid and reliable because you cannot create treatments and solution unless you have proper research and evidence on which to base those treatments.

I'm glad you had the courage to engage with Dr C and surprised that he has deigned to give you a 'home visit' (a rare luxury these days) His tone in your 'own home' seems slightly more reasonable. Perhaps he lets his need for promotion and notoriety on his own blog get the better of him.

Enough. I see the Facebook site has been altered now and there is a request for calm whilst things are sorted out. Let's hope poor old Brian is helped to sort out his distressing symptoms in a more suitable setting asap.

nmj said...

hey signs & cusp, an innocent comment i made to support a young man resulted in rather unfair and unkind assumptions about me, and a diatribe against people with ME.

and the actual subject of dr crippens' post - poor brian nicholson - is soon forgotten and the commenters just dissolve into a rabble of insults. there is no point going to these forums to quote biomedical facts - they are not listened to and dismissed violently.

i wish now i had said nothing to support this young man, it seems our words can be plucked & twisted to suit others' agendas.

and it is interesting that i have now been attacked by one person for *being* 'a militant ME politco', and yet previously attacked *by* someone whom i would regard as ultramilitant, who claims my book does 'more harm than good' because the character does not have ME that is identical to hers, & because my novel is not a historical/medical textbook of every fact about ME known.

i'm really tired of it all. you can't fucking win.

Cusp said...

Like I said..enough now. Time to put it to rest.

Take care and enjoy the coming weekend

nmj said...

ps. John, You speak of 'rational discussion', you weren't so rational yourself when you used to say you thought all people with ME are mad.

And how is it remotely possible to have any kind of debate in the kind of toxic environment that blog threads like yours produce - should you not be monitoring some of these comments? Really.

Semi-anonymous said...

ugh i followed that blog from a link on an ME forum.. some of the views there were shockingly ignorant but depressingly predictable. like you, i have ME and good for you for standing your ground.

sam x

nmj said...

hey semi-anon,

interestingly, those trying to present the biomedical side - on the thread in question - remain calm but firm.

the others, the extreme non-believers, you can almost see them frothing at the mouth with glee, buoyed up by anonymity and self-appointed expertise.

you have to wonder where does all their rage come from?

i don't get it.

McBöbø said...

Well knowing you slightly as I do, I think I can vouch that you're not the Used Car Saleswoman of ME hawking your book from street corners.

I think also long-term frustrated, rather than militant.

And as for mad, well, really …

nmj said...

thanks, bobo.

i am reposting a comment i wrote to dig yesterday in my may 16th post here as it is relevant:

i do regret now that i joined & commented on the FB site supporting the young man when i didn't know more about the case, and have since deleted my comment from that site, though it remains on my previous blogpost.

the fact remains that hearing of someone with ME, especially a young person, being sectioned is like a red rag to a bull, simply because of the bullshit that has gone on before. but *if* brian is drinking dangerous amounts of water (i truly have no idea) of course he requires intervention, though i would still be very concerned about a psychiatric ward's knowledge of ME, and i would be afraid of prejudice and ignorance being acted upon.

it was, i think, the first time i had commented on any FB site, & i will be very careful before i ever do so again - it is scary the way your words can be immediately cut & pasted in tabloid fashion to suit someone else's agenda.

and i reserve the right to mention my book wherever the hell i like! it is such a big part of who i am and relevant to *any* discussion on ME.