Saturday, 13 August 2011

Writing emails when you should be the air traffic controller

I don't want to give Stefanie Marsh's love letter to Simon Wessely last weekend more oxygen than it has already had, but a week later I'm still angry - and incredulous -at such sycophantic nonsense being published. There have been some excellent responses which we will no doubt not actually see published - or if we do, they will be edited versions that very much dilute the criticism aimed at both Marsh and Wessely - so I'm highlighting the 25% ME Group's response and also the European ME Alliance's. Both bang on. My own response will, of course, have been rejected, I imagine it is too tongue-in-cheek. When I wrote it in draft, I had both my nephews at my feet, literally, they were on the floor playing at airports, they have a plastic runway map and toy planes; I explained to them I had something very important to do. I was the air traffic controller and I apologise to them again for taking time out of such an important game to write the email, wasting precious time with them. I just felt so misrepresented - and insulted - I had to do something.

Dear Editor
Stefanie Marsh's interview with Professor Simon Wessely ('Doctor's hate mail sent by the people he tried to cure', 6/8/11) would be almost amusing in its bias and hyperbole, were her inaccuracies not so alarming. I was diagnosed with virally-induced myalgic encephalomyelitis (ME) in 1984 by a consultant neurologist, so it's fair to say I have an in-depth knowledge of the illness. It's worth noting I'd never heard of ME - and the label CFS had not yet been coined - when I got ill, but I was transformed from a vibrant, straight 'A' undergraduate to a grey and bedridden 20-yr-old. I feel obliged to say that I do not recognise Professor Wessely as 'Britain's foremost authority on ME' and I do not know any ME sufferers - or doctors - who do. I wonder, therefore, if Stefanie Marsh could provide us with a list of these 'health professionals' - in the UK and worldwide - who hold Professor Wessely in such high esteem in relation to my illness? She reports with great confidence on Professor Wessely's credentials and I am genuinely curious to know.
Yours sincerely,
Nasim Marie Jafry, author of 'The State of Me'


Amy said...

My friend Katie and I both wrote letters too, and I know of many others, but as far as I know, none of them were published. I guess it's been an event-filled week with the riots and world economy, but to give a double-page spread to such a sycophantic interview and then publish nothing to balance it out feels outrageous.

My letter said:

"As a person who has had ME/CFS for decades, I have some simple points I would like to make in response to your interview with Professor Simon Wessely. Professor Wessely says his research shows that a third of patients who follow his treatment strategies recover from the illness. But no mention is made of the the fate of the two-thirds who do not respond to treatment, or the fact that those treated are usually the less severely affected, ambulant patients who are able to attend outpatient clinics.

I have engaged completely with intensive graded activity and CBT therapies, for nine months at a very small inpatient unit for severely affected patients (I should add that this unit is now under threat of closure, and that very few patients get access to such services), but am still bed bound. I would like to point out that my frustration lies with the fact that these treatments haven't worked for me, and so I am left without treatment options. An important point which seems to be completely missed is that, if patients want to see research into other types of treatment, or reject Professor Wessely's work, our primary motivation for this is because his methods haven't worked for us and we want to get well and get our lives back. If I had a psychiatric illness which responded to treatment I would be overjoyed, compared to being stuck in the limbo I now live in - bed bound and unable to care for myself.

I in no way reject psychiatry as a whole, I just want an effective treatment, and for me, behavioural treatments have been ineffective. I suspect this applies to the majority of decent, rational ME/CFS patients who are asking for other types of research to be carried out."

Less tongue-in-cheek than yours, and probably less entertaining, but some serious points no-one ever seems to make when we are accused by the likes of Wessely of being in denial of having a mental illness/stigmatising of mental illness etc etc.

Just to repeat myself: I just want treatment that works. And Wessely can't answer why his treatments don't work for the majority.

Also, what was all that tripe about "CFS" being a "metaphor for out times"?! Hello Wessely/Showalter Showboat! Come in please, your time is up!

nmj said...

Hey Amy, My heart goes out to you and others who are severely affected when you have to read this tripe. I think I have said before that I am not sure how I would cope with these assaults - and they are assaults - were I still severe. There are so many outrageous claims in the article, and yes, you have addressed what happens to the 2/3 who don't respond to SW's treatments. SW doesn't seem to be bothered. But I also wonder how many patients of his actually have ME? My guess is that he sees mainly patients with idiopathic fatigue or post-viral depression.

None of us reject psychiatry as a whole - though he has really brought psychiatry into disrepute - in a big way. We simply reject being forced to adopt a psychiatric model for our illness which we know beyond doubt to be neuroimmune. I know beyond doubt ME is perpetuated by underlying inflammatory processes. I know after 28 yrs and I knew after 1 yr.

Talking therapy for secondary, reactive depression/anxiety that you may have cos your life is ruined/broken by neuroimmune illness is a totally different ballgame but Stefanie doesn't let that get in the way as she indulges in propaganda she barely understands.

The 'metaphor for our times' is pure Wesselymania, what is he on about??? He is on some crazy irrational funfair ride, squealing with glee, caring not a jot for the consequences of his actions.

Hopefully, the Times will publish some letters to balance Wesselymania when the riots commentary has died down. I would not be surprised in his next instalment if SW is comparing us all to looters.

nmj said...

From the 25% Group letter: 'In 2004 the Countess of Mar claimed in the House of Lords, "Since his arrival on the scene in 1987, Wessely has repeatedly and persistently played down, dismissed, trivialised or ignored most of the significant international biomedical evidence of organic pathology found in ME because it does not fit his psychiatric model of the disorder. She went on to call him "savagely cruel to the ME community”. This is a view of Simon Wessely that it may have been useful to explore in an article that seems astonished that some ME patients are angry with him.'

Just wanted to highlight that for any Times readers - or journalists - perhaps peeping in.

nmj said...

The Countess of Mar debating in 2010

'There is a school of psychiatry determined to claim the condition for its own, both in the UK and internationally. After many years of working in this sphere, I have observed the means by which any valid arguments for a biological cause are mocked and eventually overwhelmed by the noisier medical opposition. They ignore internationally recognised science on the grounds that it is not scientific. They find every reason to reject small-scale scientific research projects conducted in the UK because they are not representative. Members of their own profession who have a considerable degree of success in treating patients with ME are hounded out of business.'

nmj said...

cont'd... Countess of Mar:

'I wish I had the solution to the suffering of people with ME. It seems that, no matter how often Ministers and senior officials confirm their acceptance of the seriousness of this condition, nothing will change until the culture both within and outside the NHS changes. I believe that in this particular case the patients, some of whom have experienced illness for decades while others have made excellent recoveries, have a huge amount of knowledge to impart. The Canadian guidelines to diagnosis and treatment of ME have, for reasons that have never been explained, repeatedly been rejected by health professionals and yet they are regarded by patients as providing the best course of action.'

nmj said...

This clip relates to the tragic death of Sophia Mirza in 2006, a severe ME sufferer, who was forcibly removed to a psychiatric hospital. At post-mortem she was found to have significant abnormalities in her spinal cord; CFS is on her death certificate. Dr Abhijit Chaudhuri, consultant neurologist, 2.48 mins into the clip: '... She (Sophia) deserved to have been seen by a neurologist & managed by a multi-disciplinary team rather than being left in a psychiatric hospital...'

Digitalesse said...

I sometimes wonder whether the reporting of ME/CFS as "all in the mind" is actually more of a construct of journalists rather than those working in the field with real word patients. There has been a lot of good quality research carried out by the unit which his name is associated with, including brain scans showing up areas of brain activity/underactivity and research into the HPA axis and hormonal imbalances which could account for some of our symptoms.

Whenever there is an article on ME in the press, the angle is always "all in the mind", "Yuppie flu", "mystery illness" and "controversial" and so on. Although this way of reporting ME/CFS was probably more accurate in the past, I don't think any of the specialist CFS units hold those views now.

I'm not denying the damage that has been done to people in the past - children being thrown into swimming pools and all those horror stories. I'd like to think that we have moved on by now and such things don't happen now. I sincerely hope not.

In my own experience, I have met some PWME who flatly refuse to attend certain specialist units for fear of the "all in the mind" tag and imagining that they are going to be forced to do gruelling exercise regimes that will make them worse. In my experience, I've met entirely sympathetic therapists who have been very helpful and I feel sad for those PWME who have point blank refused to attend a specialist fatigue clinic that might actually help them.

At the same time, I also know a lot of PWME whose favourite pastime seems to be be 'spot the loony' and making remarks like "Oh that one's definitely a mental case" when they encounter another PWME that they don't like for some reason. How exactly are they promoting the cause of people with ME/CFS if they are even more dismissive of someone's reality than these demon doctors?

I guess my point is... I think there are problems on both sides - the medics and the PWME - and a lot of it is based on misunderstanding. Journalists peddling the same old themes of "mystery illness' and "all in the mind" don't help one bit.

nmj said...

Yes, good clinicians out there, no doubt, but they never get in the media! And we also just had the farcical PACE trial and it is certainly not helpful to have Wessely with his hysterical headlines, saying the illness lies between neurology and psychiatry when it clearly doesn't. Maybe for his 'chronic fatigue' patients but not for those of us with the neuro inflammo horror of ME. Am saddened to hear of the 'pastime' you describe, I have personally never come across such people. But I agree it is not just the lightweight/non-biomedical researchers, it is journalists and health editors who are equally to blame, colluding, keeping the old myths going.

nmj said...

I also think reassuring to hear your positive experience at one of these 'ME/CFS' clinics, of course we don't have them up here, but I must admit I would be very wary!

nmj said...

...thinking of the PWME you describe who are so unkind to other sufferers - i think when you misrepresent - and mistreat - a patient population for decades, as a core of powerful psych-oriented researchers and health editors in uk have done - unsavoury behaviour is bound to happen.

...not an excuse but maybe an explanation.