COMING BACK, CATCHING UPMost of this month I have been away, breathing real air. Back at the office I am now in the midst of inches of paper and kilos of bytes; I am still rolling them all around my mind. I feel like asking What's Up? as well as What's New?
What's new is more letters and non-letters from the authorities, to add to the already abundant evidence of official remoteness, incompetence and evasiveness. The referral of complaints to the Ombudsman did finally spur the MCA into inaction; the Agency has now produced summary explanations for refusing to answer numerous questions, some dating back to last March. Meanwhile, communication with the European Commission has run into a thick brick wall, and there has been no word from the CSM or WHO. I shall not jump straight back into the rut of correspondence, but expect to address the issues soon.
What's mainly up is more comments from site users. (It helps having one forum for discussion, but apologies for the irritating message sequencing problems.) Note the several new reports of problems with venlafaxine (Effexor); these tally with yellow cards doctors have been sending to the CSM. Some insipid official statement on this is probably on its way; robust guidance from the manufacturers (Wyeth/Ayerst) might help in the meantime.
I am about to go to work again, but felt I wanted to mark the first day of the New Season with something more personal. The following is the text of a letter posted to the Discussion section today.
Dear correspondents and readers, I am really pleased some of you value this site, and grateful that you say so. I print out and read all comments carefully and keep learning from them - not least from their generosity, courage and good common sense. But please excuse me if I don't usually respond. I am especially cautious about offering anything resembling a clinical opinion, or advice about the usefulness or not of any treatment for depression. I am completely unqualified to do so - and I'm afraid that is not, primarily, what this website is about.
This website was set up to explore the handling of a drug safety problem essentially as a means of understanding more about the nature of institutional behaviour and performance, and about the extent of public accountability. What does the official response to this problem say about the dominant values and leadership in medicine, about standards of research, levels of intellectual hygiene, and states of understanding?
The evidence indicates that agency routines and official credibility depend fundamentally on systematic obfuscation. In view of all that is said about the benefits of drugs, this secrecy about risks seems dangerous. It is not merely a bureaucratic pathology; it is also a tried and tested recipe for ignorance and ill-health.
The medical establishment has always tended to promote consumer ignorance about medicines, believing that secrecy augments placebo effects. Until quite recently, these non-drug effects were most of what medicine has had to offer - but nowadays there is more talk of consumers' rights, and many more potentially useful drugs are available to them.
Things are changing, and a so-called age of "evidence-based medicine" has at last begun. True, this infant was only recently christened and is still somewhat sickly on a mainstream diet of snacks of information served up like The Real Thing. Nevertheless, the baby is growing and the view is gaining ground that ignorance about medicines is generally far from bliss.
However, old habits die hard and the authorities seem very slow to adapt. They continue to promote ill-health through non-intervention, parsimony with the truth (and/or extravagance with selected bits of it), and wild manipulations of meaning. The inability of the medicines control authorities to acknowledge the difference between a dead parrot and a live one puts one rather in mind of the present gulf between popular and presidential understandings.
But if the main aim of this website is to raise questions about the perspectives of health-care providers generally, we cannot accept responsibility if their answers seem pitiful. In particular, some find it a problem that ADWEB includes discussion of withdrawal problems, but no advice about how to avoid them. But even this is not up to us: the point of the exercise is to get those responsible to provide the advice and warnings people need.
As an exception to the rule, I want to draw attention to one new message, because it helps to make some important general points:
"The new antidepressants (I take Zoloft) are absolutely wonderful, I would rather be dependent on them for the rest of my life than suffer one more day of depression." (N Beckett, 980919)
The main thing to be said is that, as an assessment of the value of treatment in this particular case, there is nothing more relevant you will find on this site. With reservations, I also agree strongly, in principle, that dependence might be a price worth paying for a drug which worked really well. This letter seems a good reminder that depression and related forms of psychic distress can cause deep suffering - and that any drug that can block it must seem a godsend. Leaving aside how they work, and all kinds of questions relating to comparative value and possible risks, there is no doubt that many people feel much better after taking an antidepressant. Their views are almost certainly under-represented on this site, if not elsewhere.
However, different drug and other treatments for depression work for different people in quite different ways. Individual response to drugs like antidepressants varies hugely - so extrapolations and generalisations about the benefits or risks of particular treatments have very limited predictive value. In other words, the above comment (many others too) must be read as strictly personal assessments, which may have no relevance for you or many other people. Here are some obvious caveats:
Another reason for focusing on this message is to draw attention to perhaps the most legitimate reason (and convincing explanation) for the continuing official insistence that antidepressants don't cause dependence. This is the belief that people, when depressed, need all the help they can get - and should not be additionally distressed by warnings of risks. Depending on circumstances, one can sympathise with this concern - if not with doctors who don't yet realise how bad withdrawal symptoms can sometimes be. This otherwise rather paternalistic and self-interested view seems deeply entrenched: I have heard it privately described as 'hypocrisy' by one leading expert - who nevertheless feels it appropriate to say publicly that antidepressant drug dependence is not really a problem at all.
For all the benefits, there is now a wealth of evidence from users that dependence (but call it what you will) on antidepressant and other psychiatric drugs is indeed a reality for some. The continuing failure to officially recognise and warn of this presents avoidable, unacceptable risks. Some proportion of users (up to one in three?) find it creates problems, sometimes badly compounding the burden of psychic distress.Finally, there is this point, at the core of The Antidepressant Web. The problem unfolding does not only signal misery for some 'pts'. It also implies catastrophic misunderstandings, routine lack of honest fact-finding, and sometimes grotesque failures of communication. The UK medicines control system may be among the very best in the world, but it (and its terms) seem in some ways hopelessly inadequate to the reasonable needs and expectations of medicine users. This surely will not change until they control their own show - "The public do not know enough to be experts, yet know enough to chose between them" (Samuel Butler, 1835-1902). In the meantime, experts would be well-advised to heed what you have to say.
|24 September 1998|