Wednesday, 10 March 2010

Return to sender

The BMJ advertises itself as 'helping doctors make better decisions'. I'm sure it achieves this often, but I fear when it comes to ME, this is not the case, although following the furore over the recent editorials on ME, the editor does here highlight the difficulties present in the diagnosis of and definition of the illness.

But if the BMJ wants to help doctors make better decisions why has it not drawn attention to Professor Malcolm Hooper's recent letters of complaint/reports to the MRC, and NICE chairman, which describe in detail the medical and political skulduggery that surrounds ME, specifically the flawed MRC-funded PACE trials?

Chillingly, NICE chairman, Sir Michael Rawlins, returned the report (which makes fascinating and disturbing reading), you can see his curt response here. In turn, Prof. Hooper responded: ...To be faced, yet again, with the denial and dismissal of the comprehensive amount of biomedical evidence about ME that has been presented in some 5000 published and peer-reviewed papers is disturbing and has sinister connotations devoid of any compassion. And why nowhere does the BMJ mention that MRC files on ME are being kept under lock and key til 2071? Would it not be helpful to doctors to know the extent of the skulduggery?

And how many doctors just skim through the printed edition of the BMJ when it lands on their doormat, how many would actually take the trouble to look up the online responses, unless they were already interested in ME? Those who just skim - most of them, I guess - will be left in little doubt, I'm sure, from recent editorials and printed letters - this one from a doctor who recovered fully after CBT/GET - that ME is eminently treatable with 'rehabilitation' and the right attitude. And so the Wessely band plays on, largely unchallenged by the establishment.

There is a BMJ podcast here, featuring Simon and his rehab techniques. He's about 4.25 mins in. He reappears at end - 23.25 mins - with the gem that 'other disciplines should get more involved because CFS is under-researched', and is actually a 'very enjoyable and very rewarding' area of research.


nmj said...

Someone with BMJ subscription has kindly sent me the full letter - below - from Dr Stephanie Munn which I had responded to online, having just seen the abstract. While it's useful that she points out the dreadful disbelief/prejudice she herself experienced from other doctors, I am greatly concerned that she is confusing the neuro-immune illness I know as ME with her own, which I would call CFS as defined by Wessely ... She herself received a diagnosis of ME, but what were the criteria? She also made a full recovery after CBT/GET and feels strongly that there is an element of choice in getting better, ie if you really want it you can have it, with the 'right' support around you... I've said everything in my BMJ response already, but would like to add that ME is no more 'a selfish illness' than MS or lupus. Lonely, yes, selfish, no.

More than defeatism greets patients with ME: Stephanie E Munn, consultant dermatologist

I was diagnosed with myalgic encephalomyelitis (ME) in 2003, referred to the Maudsley for cognitive behaviour therapy and graded exercise therapy, and have recovered fully. When the diagnosis was made I met it with disbelief—I too had misconceptions about ME.1 My immediate colleagues carried me through the first six months when I could hardly function, needing to rest frequently. The managers encouraged me to work the hours I could, recording no sick leave as I came into work daily. Four years later I was working normally and have since taken on a management role.
How much easier it would have been for me to go off sick. But staying at work is one of the most important prognostic factors for patients with ME.

The tragedy of the mother who helped her daughter with ME to commit suicide is that the medical profession let her daughter down. Why do we find ME so hard to deal with? We all accept the effect the psyche has on the physical, so why can’t we accept a condition that involves both? I have been told not to admit to having ME and had it discounted from my medical history as if it didn’t exist. I have witnessed colleagues making appalling generalisations about people with ME.

ME is thought to be a selfish disease and I understand why; but it is also a lonely one, with a huge social and professional stigma. I knew it was down to me to get better—no one else could do it for me, but I could not have beaten it without the help of those around me. I thank them and hope others are as fortunate.

Cite this as: BMJ 2010;340:c1179

Carissa Thorp said...

re the letter from Stephanie E Munn

Why is that sort of behaviour considered admirable? If she'd taken time off work, she may well have been back to full health within a year. Possibly she only had a post-viral syndrome.

I hope that she was self-employed, or in her own practice, otherwise working only the hours she could manage, yet taking a normal wage almost qualifies as fraud, surely.

And then there's her patients, getting treated by a doctor who's not operating anywhere near her best; thank goodness she was only a dermatologist.

You're much kinder to her in your comments, than I have been. I admire your efforts to comment and follow up on the BMJ articles, but please, take care of yourself :-)

nmj said...

Hey Clarissa, Of course I feel pretty insulted when someone who had ME for 4 years evangelises about CBT/GET, as this doctor does, somewhat irresponsibly I fear. However, there is nothing to be gained from me getting hugely angry with her on any threads - it leaves me wrung out - as it is much more the fault of the diagnosers, ie. the Wessely gang, who have, as we all know, hijacked ME as their own and turned it into CFS. Stephanie Munn has recovered fully from what she was told was ME. I don't think it was. I think it was a milder post-viral illness, a short term thing, or CFS, as defined by Wessely. But I can't really know, it is her illness, not mine. But now we will have GPs reading her letter and thinking, Yes, patients with ME need to really *want* to get better. Just more obfuscation, same old, same old. And it is chilling that she faced such prejudice from those in her profession, but we have been facing this for years. It is hardly news. I wonder if it is worth my energy replying to BMJ articles but then I think of my 19 yr old self have this illness punch into her life, and the devastation that followed, and I get angry all over again at this hokum we have to live with. 27 years after my diagnosis, how much has really improved? We have the XMRV research, but they are all fighting about that too.

Nicky Reiss said...

I admire you for continuing to write about all this. I find the BMJ's approach, and the letter you quoted, (and much else) deeply disturbing (I'm just too worn out to blog about it at the moment). Like you, I know how badly I want to get better, and I know that each and every time I go out and do a bit more and make some effort I get hit with a nasty rebound. Her comment: "But staying at work is one of the most important prognostic factors for patients with ME." is deeply insulting to those of us who have lost good jobs due to this terrible illness...

nmj said...

Nicky, Wd be great if you can respond on the BMJ website, with what you just said!

Susannah said...

Ugh!! I would like to say that I am shocked and surprised by the total brush off given by Rawlins (and no doubt his legal team!) - but the truth is, it doesn't surprise me one bit! But I do find it hugely frustrating, and quite upsetting, maybe even a little hopeless, to once again have genuine concerns about these issues be ignored so callously.

Ohhh yes, I am sure, after seeing that, that my (now 15 year odd long) illness can be cured with some good feelings and a genuine desire to be well. :P :p :P Grr.

Nasim, I am so glad we have you to respond to articles on the BMJ and such places. I am just not physically/mentally able - but to know someone is fighting our corner - well, I just can't tell you how much that means! Thank you!!

nmj said...

Susannah,Thank you.