Tuesday, 19 April 2011

Ignorance about ME is unacceptable when you are editor of The Lancet

I was updating my sis-in-law on PACE at the weekend and she said: 'Why are they doing this, what's in it for them?' I replied: 'I think they are in so deep with their lies, it is just easier to keep going than stop and say, Look we have been wrong all along, we are sorry.' My sis-in-law is German and she often refers to my 'pudding legs', meaning 'jelly legs', it always makes me smile.

Yesterday, I listened to Richard Horton, the editor of The Lancet, defend the PACE trial on an Australian radio programme. Horton described detractors of PACE as 'a fairly small, but highly organised and very damaging group of individuals who have ... I would say... actually hijacked this agenda, and distorted the debate ... so that it actually harms the overwhelming majority of patients'. (The irony, of course, is that he could be describing CBT/GET psychiatrists. And most people with ME are passionately against the bogus science of PACE, we are not a small group.) He went on to express his disdain for protestors for 'undermining the credibility and integrity' of the conductors of PACE.

And what about the PACE scientists undermining the credibility and integrity of patients with ME? (Got ME? Just get out and exercise, say scientists, The Independent, 18/2/11)

Meanwhile, Professor Sharpe had earlier said in defence of CBT and GET: '... you can actually make some changes in your illness, you don't just have to lie back and wait for time, it's worth a try ...'. It's that deadly little phrase that gives away the profile of these people: 'You don't just have to lie back and wait for time'. How dare he! Maybe if I had just lain back and waited for time, I might be more recovered than I am today, twenty-eight years after getting sick. I know from experience that graded exercise is harmful, I know pushing yourself beyond limits results in catastrophic relapse. (But I have neurological ME, not idiopathic chronic fatigue, so PACE is meaningless for me, contrary to the belief of its architects.)

What is disturbing is that if you had listened to this interview knowing nothing about ME, Michael and Richard could have come across as reasonable, rational medics - though Richard does at times seem petulant - while the ME population and its advocates are portrayed pretty much as rabble-rousers. The lack of balance is quite alarming. (This is reflected in the comments on the show's website. Why was there no patient representative on the programme?)

Invest in ME have now invited Richard Horton to the 6th Invest in ME International Conference, suggesting to him that such ignorance about ME for someone in his position is simply not an option. And Professor Malcolm Hooper has just published his official complaint to The Lancet online, which Richard referred to as a '43-page diatribe' during the Australian interview. I also see that The Lancet has just rejected the ME Association's letter of complaint about PACE.

And I thought an editor's job was to edit not censor!

***I would like to add that I just saw that Richard Horton had in March 1997 written an article for The Observer's Life Magazine, entitled Why Doctors are Failing ME Sufferers' (scroll down to Alison Hunter Memorial Foundation link to see the full reference):

Horton acknowledged that "today, physicians do not take kindly to being challenged. They feel defensive and insecure. They have become accustomed to unqualified respect and genuflection. Nowhere is this trait more obvious than in the treacherous swamp of confusion that is myalgic encephalomyelitis (ME)". Outlining the objections of the Royal College's Committee to the term ME as an unsatifactory label, Horton noted "they used this semantic quarrel to establish a cardboard case against the idea that chronic fatigue syndrome is an organic brain disease."

What on earth, we may very well ask ourselves, has happened to Richard Horton's critical faculties in the intervening fourteen years?

Full transcript of radio interview here via ME Assoc.


12 comments:

nmj said...

It should also be pointed out that when you have severe ME you have no choice but 'to lie down and wait for time', but it is hardly the relaxing process Prof Sharpe is hinting at. It is like living in some kind of hell.

And this below from: http://www.meactionuk.org.uk/The-Media-and-ME.htm

'There is one crucial point that should not be overlooked amidst the multitude of comments, spin, disquiet and anger surrounding the clearly contrived and exaggerated results of the PACE Trial, which is that if the PACE Trial Investigators had claimed to be studying the effect of CBT/GET on people with medically unexplained or idiosyncratic “fatigue”, few people would have objected.

What is fuelling the opprobrium is the fact that the PACE Trial Investigators insist that they have been studying those with “CFS/ME”, which is how they refer to the neuroimmune disorder ME/CFS.'

Cusp said...

What's frightening to me is that the more such opinions are expressed by people like Horton, the more 'ordinary people' assume that people with M.E. or chronic fatigue, or whatever they choose to call it, ARE just a bunch of slightly demented rabble rousers who choose to just lie back and wait. All the people I know with M.E. might be lying down (when they HAVE to) but even then they are fighting and searching and trying for answers, clues....ANYTHING to be well again.

On the other hand of course, in the earlier stages of he illness one probably IS better off lying down rather than exercising and I wish to God I'd listened to myself instead of GP about GET. I wish I'd followed the mantra which was given to my father when he was ill with TB in the 1940s 'Never walk if you can sit. Never sit if you can lie down'

sylvieromy said...

If I was a doctor or a researcher, and so many of my patients consistently, said I'd got it wrong, I would eventually wonder whether I'd got it wrong...

nmj said...

Hey Cusp, I meant that when you are severe, there is no choice but to lie down, you are bedridden and feel as if you are dying. This is not the same as lying back/giving up as Prof Sharpe seems to be suggesting. And if you do begin to recover spontaneously - and I mean small, often imperceptible steps - with rest and time - you should definitely not hijack your healing with GET/pushing beyond limits. That is surely the way to relapse, permanent ME.

Hey Sylv, You would think so, wouldn't you? But this lot just seem to hold ever more tenaciously to their beliefs. The more you think about it, the more you realise that the ABC interview was so staged to discredit ME sufferers who are opposed to PACE ie - most of us!

sylvieromy said...

What's so odd is that we're always being told that researchers etc get put off from studying this area because it's so full of controversy, yet the psychos are never put off. I wonder what keeps them here?

sylvieromy said...

I also think Kay Gilderdale's decision to talk to the media, giving a detailed account of her poor daughter's experience of ME and her cruel treatment by the medical profession, is a sharp reply to the PACE guff and offers the public a different story to the usual rubbish.

If I was anyone who allowed this state of affairs to continue after reading such stories, especially if I could've changed it, I wouldn't be able to live with myself or the pain I'd caused others.

Firestormm said...

Hey nmj, another well written piece and thanks also for the added information about Horton's previous article.

nmj said...

List of some of PACE complaints letters rejected by Lancet - via Phoenix forum:

http://forums.phoenixrising.me/showthread.php?11134-PACE-Trial-letters-that-were-not-accepted-by-the-Lancet

Standard response seems to be: Thank you for submitting your letter. After in-house review, I'm afraid we have decided not to accept it for publication. We regret that we are unable to write a personal note for every letter we turn down, but the following common reasons for rejection may help you with future submissions: lateness (ie, more than 2 weeks after publication of the article on which you are commenting), inclusion of original research (the section is not peer reviewed, so we cannot publish such work here), submission of case reports (we have a separate section for these), reiteration of points made by another correspondent, and inappropriate length (limits are 250 words and 5 references). If none of these apply to your letter, please be assured that we have nevertheless considered it carefully and probably had to refuse it because we have simply received too much good material.

It reminds me of the standard rejection letters you get when you are starting off, trying to get short fiction published but in this case the fiction is PACE! This really is disturbing - both Invest in ME and MEA have been rejected.

nmj said...

http://www.mecfsforums.com/wiki/Rejected_Letters_to_the_Lancet#Letters_from_ME_organisations

nmj said...

http://niceguidelines.blogspot.com/2011/04/jo-bests-superb-letter-to-richard.html

nmj said...

http://niceguidelines.blogspot.com/2011/04/uk-pace-trial-its-zombie-science-is.html

nmj said...

Complete arse of a doctor in Irish Medical Times:

http://www.imt.ie/opinion/2011/04/the-pace-of-chronic-fatigue.html

Jane Colby's response: http://www.imt.ie/opinion/2011/04/doctor-showed-himself-up-with-lack-of-knowledge.html