Thursday, 23 June 2011

BMJ editorial on ME

Here's a recent BMJ editorial on ME by Fiona Godlee and my response (which has been slightly edited, I stated that Wessely and colleagues had conflated ME with chronic fatigue, but their names have been removed). We are illness of the week! There are three other articles: one by an ME sufferer Ollie Cornes, one by the deputy editor Trish Groves and one by a freelance journalist Nigel Hawkes, which is breathtaking in its distortion of events. We are being manipulated to feel sorry for psychiatrists. All the fun of the fair! The MEA has linked to the full articles here.

*I also now have a comment up on the Hawkes' article, also one rejected, (see below in comments). There are some excellent responses to Nigel Hawkes.

** I see Norway has rejected CBT and GET as therapies for ME. If this were the Eurovision they would get douze points!

***A brilliant response to Fiona Godlee by ME sufferer and former director, Caroline Davies.


sylvieromy said...

Excellent response Nasim.

nmj said...

Thanks, Sylv, it is not as sophisticated as I would have wanted but it was very late when I wrote it. I have digested the articles a little more, though am washed out with four in a row. My impression is that, perhaps, knowing their position is untenable, they are *slowly* admitting that we are right: Fiona Godlee conceding that Canadian Guidelines make sense and referencing an articulate ME sufferer (we are used to being ignored, no matter how articulate); Trish Groves saying ‘campaigners may have a point when they complain that focusing only on the trials and systematic reviews (mostly of exercise and cognitive behavioural therapy) might skew research agendas, peer reviewers’ and editors’ priorities… ’- albeit in a very ‘hedging your bets' manner, but still, she is saying it.

But, because they can NEVER admit the damage the psychiatric lobby (PACE being icing on cake) has done, they now have to talibanise ME sufferers so that the focus is on extremists (found in any political movement where people are oppressed), and are cleverly shifting away from the actual plight of ME sufferers. Hence, we have the soap opera piece of Nigel Hawkes and the violins out for Prof Wessely and his buddies. As I said in my rapid response (not yet showing), it is Wessely, and the editors who have supported him over the years, who have stifled ME research. Not patients.

nmj said...

My rapid response to Nigel Hawes, which may or may not be posted!

If I knew nothing about the neurological illness myalgic encephalomyelitis (ME), I would come away from Nigel Hawkes' article, thinking what a bunch of ungrateful, scary people ME sufferers are, almost rabid, in fact. What Nigel Hawkes fails to do, is report fully the context of denial and disbelief that has gone on: a group of UK psychiatrists hijacked a neurological illness, renamed it chronic fatigue syndrome (CFS)- or more recently CFS/ME - and actively discouraged any kind of biomedical research into the condition, focusing solely on psychological interventions. (Can you imagine the ludicrousness of renaming MS 'CFS/MS' or cancer, 'CFS/cancer'?) I would, of course, not defend physical threats to researchers, but abuse often engenders abuse and this squeaky-clean image being presented of kindly psychiatrists trying to help is rather contrary to reality. I suggest that it is not patients, but these psychiatrists - and the editors who have loyally supported them over the years - to the detriment of ME sufferers - who have been the very instrument of 'stifling research'.

Muhamad Lodhi said...

Psychiatrists are the last people I'd trust. :)

nmj said...

hey m, there are undoubtedly good psychiatrists and psychologists out there, it is this particular clique that have caused havoc for us.

Anonymous said...

As someone with the experience of having a career as a psychologist (pre ME), I am accustomed to the perpetual over-emphasis on CBT as the apparent "gold standard" of psychological treatment for supposedly all emotional and mental health difficulties. (There are a multitude of other excellent therapeutic approaches available and, when their efficacies are compared with CBT, the only thing the research is clear on is that their degree of effectiveness depends predominantly on the quality of the rapport and trust between psychologist and client.) In the world of psychological treatment, I believe it is narrow and also disrespectful to apply any "one size fits all" approach to psychological treatment and the psychologist's approach should be flexible to the therapeutic needs of the person seeking their help. The more I read about the PACE issues, the more alarmed and astounded I become that CBT has also so devastatingly influenced the ME treatment debate. I continue to be simply baffled as to how a single psychological treatment modality has developed so much power as to dominate, not just the focus of psychological treatment, but that of ME, a PHYSICAL illness.

nmj said...

Excellent response to Hawkes' piece by Linda Crowhurst.

Hey Anna, We are all baffled! And angry.

nmj said...

I feel angrier today, four articles together is a lot to absorb, but much of them are saying the same thing, primarily seeing the ME debate through the Wessely prism. F Godlee says:

Despite being heckled by delegates, Trish Groves has offered
to attend next year’s Invest in ME conference, to talk about the
kinds of research questions and study designs that might attract
national research grants and be published in mainstream medical
journals. And there is hope that such research may be on its
way. As Nigel Hawkes explains, the MRC has set aside £1.5m
for research into CFS/ME. To encourage new entrants, the
successful proposal must include at least one scientist who
doesn’t already work in the field.

Are we supposed to be grateful the BMJ deputy editor – and defender of PACE trial - is deigning to attend next year’s Invest in ME conference? Are we supposed to be grateful that the MRC is handing us out crumbs after years of preventing any meaningful research into our illness?

These people just don’t get it, the harm that has been done.

And someone really should explain to Trish Groves that post-exertional malaise is the hallmark symptom of ME. Thankfully, Dr Speedy already has.

nmj said...

So many flaws in Hawkes' article, and he deserves no more of my energy, but I thought I'd answer this:

'Professor Wessely is not alone. All of those who approach
CFS/ME from a psychiatric perspective are the targets of critics
who believe the disease has a physical cause that would have
been discovered by now if the debate, and the research money,
had not been cornered by what they see as a conspiracy of
psychiatrists, characterised by them as “the Wessely school.”'

First of all, Nigel we know the disease has a physical cause, we know there is some diabolical organic process going on that is making us feel lousy. We get a virus and we don't recover. (The next time you have flu, try telling yourself, Nigel, that CBT and graded exercise are the very fellows to get you on your feet.) Secondly, I have no idea if the cause and/or cure for my illness would have been discovered by now if biomedical research had not been discouraged in favour of nonsense psychobabble, but at least, we would be getting there. At least ME patients would not have been disrespected, neglected and abused by all and sundry for the past twenty plus years.

And, finally, Mr Hawkes, the reason that 'pacing is favoured by leading ME charities' is BECAUSE IT FUCKING WORKS. (Bizarre, I know, the concept of actually listening to patients.)

Digitalesse said...

Illness of the Week? That's almost as good (or as bad) as hearing Tony Blackburn or some such 70s DJ shout out, Yes! It's Number 1, it's Top of the Pops!"

I'm not being irreverent just for the sake of it, though. I'm just fed up with ME/CFS being some kind of media defined 'controversy'. Excuse me whilst I do a Yoko Ono primal scream. (Cover your ears now!)

nmj said...

Dig, I think they are more hurt by the backlash that Lancet/PACE caused than they are letting on, and they are creeping, creeping slowly towards the truth - but as I said above they have to get the boot in at the same time so we get the tear-jerker stories of poor abused researchers, told in big shouty detail. But their tea is oot, and their bums are out the window as we say up here! ;)

sylvieromy said...

Just read your response to the Hawkes article - really really good, for so many reasons. You get the balance of heart and head just right. I either turn to stone with rage or become incomprehensible.

nmj said...

Thanks so much for this, Sylv. As I said elsewhere, it really is sth of an art form to get a good response that is calm and clear, comprehensive – and not angry. It can be hard to keep anger out after what we have been put through. And we have to say the same things over and over again to get the message across to a wider audience. But I *think* we are getting there. I hope so. I think I also got a lot of anger out in the writing of my book, and I can also let off steam on my blog and be more irreverent. But my head is always whirling after I've submitted a comment to this kind of forum (BMJ in this instance) and I feel upset and a bit like I've been excavated. It takes a while to come down.

nmj said...

Will be interested to see if BMJ publish this, I submitted a couple hours ago:

Like many with ME I have cognitive problems – processing large amounts of information is tricky - and am now seeing the title of Nigel Hughes’ piece as if for the first time (though I have fully absorbed the content). ‘Dangers of research into chronic fatigue syndrome’: this is simply misleading and inflammatory as a header.

While I reiterate that no one would condone threatening behaviour towards researchers, I wonder has Professor Wessely never truly questioned why people are pushed to behaving so irrationally and ‘dangerously’ towards him?

‘Dangers of misrepresenting neuroimmune illness’ might have been a more apt title for Mr Hughes and I suggest it is not patients, but the researchers who favour psychological intervention - to the detriment of biomedical research - who have been the very instrument of 'stifling' research.

I recall reading, in the late nineties, that the American academic Elaine Showalter had received death threats and hate mail on the publication of her book – ‘Hystories: hysterical epidemics and modern culture’. In her book, she suggests that ME and Gulf War Syndrome are forms of hysteria. I remember feeling huge anger towards her for writing such a book (I have not read the book and will never read it).

Again, while one cannot condone threats, one can understand how they arise.

And I’m sure there are doctors in Iraq and Afghanistan who would be most grateful to swap places with Professor Wessely since he feels safer out there.