Discussion in 'General ME/CFS News' started by Esther12, Jan 3, 2012.
What's with the eye of Lucifer ?
For my latest blog on psychobabble and one quote from Wessely:
hm, not sure if you are joking or serious?
Wessely's wife (Clare Gerada) was on the radio recently talking about anti-depressants:
She seems happy to try to hide behind claims that those questioning her are stigmatising mental health problems too. It's a pretty cheap trick imo.
Perhaps the Proff could consider that one reason so many people don't see depression as a real illness any more is because she and her mates have undone all the work so many of us did in the '80s to show it was real, by saying those with ME don't a have real illness, it's just depression!
I think that Wessely's views about CFS and depression have done a lot of harm to patients, and continue to do so even now he seems to have realised he was wrong, but I don't think that he thought CFS was not a 'real' illness. Perhaps if anything, he thought it was too much of a 'real' illness, and one that he had sufficient understanding of to place himself in a position of authority over the cognitions and behaviour of those patients with the diagnosis.
It's hard to say though.
This bit from Wessely stood out to me in relation to his promotion of CBT for all patients with CFS.
Wessley is way too optimistic here. I was trained in various methods of counselling, Rogerian, Egan and CBT. (I was only a measley nurse though, so Wessley and co wouldn't notice).
ALL the patients I worked with, without exception, knew they had either a post trauma problem to deal with, or had a mental illness such as depression, anxiety disorder etc.
Two things were evident even in those days. First. A patient with a functional or brain-chem based illnes such as the pychotic illnesses and endogenous depression, would never get better without medical interventions such as drugs and/or (God help them) ECT.
Those with PTSD or other post trauma problems always KNEW what the problem was and came to counselling to learn to deal with it. Some patients were stuck with flash backs, fear and some were self harming.
Wessley doesn't explain the basis for CBT in ME/cfs because none of us see our illness as emotional trauma based. Many of us will have had emotional trauma in our lives, in fact I bet all of us have, because nearly everyone on the planet has faced something awful at some time.
Wessley seems to be saying that it takes time - and I reckon that's because the CBT outcomes for ME have been so bad.
On a vaguely related note; in my experience psychiatrists were boxed into the medical model and rarely spent more than a few minutes with any patient. So, no wonder Wessley gets so much so wrong.
PS. Sorry if this is rambly. It's the morning, I can't see or think properly yet.
There may be extreme cases where there is such clear evidence of seriously distorted and unjustifiable cognitions that a patient deserves to be stripped of some of their basic human rights, and to have the operation of their mind medicalised without consent, but generally, it seems very dangerous to have medical staff choosing to manage and manipulate the cognitions of a patient without them having first chosen for themselves that they want to alter the way in which their mind operates, and also given genuinely informed consent for any approaches which may lead to this.
Hello Esther12, I cannot admit to fully understanding all that you have written about Wessely ( including your blog ), but I have done my best ! ( I wish I had your ability ! )
I think you deserve an enormous amount of credit for the work you have put together in bringing Wessely to a wider audience.
I have seen others ''critique'' Wessely but nobody does it better than you.
Thank you, Mark
Thanks Mark. I noticed that my blog got reformatted when the forum moved to new soft-ware, so is now a bit of a pain to read. I've been meaning to go back and re-edit that. If there's anything you'd like me to try to explain more clearly, that might also help me clarify my own thinking.
I don't know if much of a 'wider audience' are likely to read comments here!
A man who is an expert in the field of nutrition and ageing has seen your blog ( I insisted he did, our friendship depended on it )
He gives talks around Europe on his subject matter and I know he has discussed it with others. I am sure there are other examples too. The internet is amazing.
Why am I so surprised that he has never heard of Wessely ? He genuinely didn't know who he is.
Perhaps its says more about my own ignorance of the political machinations of scientific research/politics.
I remember two points that you once made :-
That Wessely likes to ''ingratiate'' himself with an audience. That resonated with me, I cannot agree more. Listening to him on Radio 4 once, talking about the London bombers and in the next sentence dicussing his favourite football team ( of course the others laughed ) I felt sick.
He likes to be liked more than he would be prepared to admit. I think he's sensitive, but with almost religious fervour he carries on like the hero that he thinks he is.
You said that he says different things to different people. Why does he feel the need to employ this sleight of hand, what is he afraid off. He dresses his arguments in warm words, diplomacy and a subtle desire to be admired, but when you strip away the semantics, you are able to see him for what he really is. The message is always the same; that this illness is primarily psychological.
I admire the fact that you have looked at this from different angles including Wessely's. Perhaps that's the difference between you and me. I am unable to look past the intense dislike that I have for this man. Thankfully I have threads like this to help me try.
He's a manipulator. Look what business he is in!
To bring in fiction to give highlight and humour to the situation the original way Hannibal Lector was portrayed (and best IMHO, not as some raving demonic bogeyman) was that he was extremely urbane, charming, mannerly and genteel. No on expected he could be such a horror, and to many folk he was actually on very civil terms.
You do not have to be some raving nut, or even actively or deliberately malign to cause a huge load of harm.
Throughout history, screw ups, horrors, wars, pogroms etc have all came about because someone knew they were doing the right thing!
Its one of the sad facts of war that most wars are justified as the "right" thing. Sometimes its just a smokescreen, but people often believe it. I do think that most promoting the idea of a dysfunctional belief system underlying CFS and ME actually think they are right, despite all the evidence against them - most, not all. The tide is visibly turning against them at the moment, in large part because their great hope, the PACE trials, were a flop. Add in the recent interest in viruses and autoimmunity, including Ampligen possibly being approved and Rituximab phase 3 trials, and they are on the skids. I think many of them sense that. I expect them to try to do something major along the way, something that they hope will get the debate back on the "right" path.
Their political support is based on the idea that they can save society money - cut health care costs. All the Zombie support they get, politically and financially, wont stave off the consequences of a failed branch of psychiatry forever.
In the bigger picture though the whole of psychiatry is under attack. DSM-V is widely regarded as very problematic - how widely I cannot assess. The utter failure of psychiatry to adequately advance the science has to be worrying for them. At issue is care for many millions of people with psychiatric disorders. Much of psychiatry appears to not work, or to cause harm, but much of it is clearly helping. How can they advance the science to find which is which? Can psychiatry be saved? Is the biopsychosocial model their last great hope? Are there better options?
Personally I think much of psychiatry is on par with counselling and alternative medicine to a large extent, and worse in many cases. It does not currently deserve to be part of the medical profession. I think it can be saved, but then that might require either a paradigm shift or the splitting up of aspects of psychiatry into other disciplines.
Part of the issue is also "evidence" based medicine. This is "justification" that many of their claims are right, but the validity of studies that are number crunched to give answers are simply taken for granted. There is not enough investigation of the underlying science, in large part because the science does not exist - its too vague to be called science. I am suspicious that much of the so-called RCTs are little better than masses of anecdotal evidence given the trappings of real science. If the methodologies used are fatally flawed then it doesnt matter what the numbers say, or how the meta-studies stack up. GIGO = garbage in, garbage out.
I think many in psychiatry and psychology are beginning to see the issues. I am hopeful this will lead to a paradigm shift - the question is what can we do, or others do, to make this happen faster?
Actually, I often link to writing by other patients too. The professionals writing about psychosocial management tend to be those who want to make money out of providing psychosocial management, so it is often patients who are most committed to trying to understand why such an approach tends to go so badly wrong.
I've just edited my blog to correct the reformatting problems caused by the change to new forum software. I added in a couple more criticisms too - I find that the more I read of Wessely, the more I dislike him. It does mean that one can seem overly hostile towards him to those who have not read much his work though. Ah well.
Yeah - Aylward was pretty explicit about that in White's book on biopsychosocial medicine.
Yeah. Also, it's really fucking difficult to accurately measure the impact of biopsychosocial approaches to CFS, even if researchers are genuinely committed to a pursuit of truth. That most of the work done in this area is by those hoping to make money from biopsychosocial approaches inevitably causes problems too. That many of them are also willing to clearly manipulate and spin their own results just turns the whole think into a joke.
alex3619 While I agree with you I think it's only fair to say that research into mental illness has been very badly funded over the years. We complain about the lack of proper funding for ME/Cfs research; well, the same goes for mental illnesses.
There's a number of other difficulties for researchers. For example, how do you find out what is really happening in the brain and brain chemistry of someone who is floridly hallucinated? You can't put them in an fMRI, they aren't well enough. If you ditched the ethics and put them to sleep - would they be halluncinating?
One of the other major factors in working out mental illness and mental health is time spent with the patient. It may be cheap for the NHS to think a psychiatrist can meet someone and know how ill they are within 10 to 15 minutes; but it isn't so (and I am sorry to say I lost a dear friend to suicide because of this cheap approach).
I am afraid I believe the lack of empirical data on so much to do with mental health is because no one wants to gather the data, and no one wants to fund it.
One of the major road blocks for proper research, IMHO is the over reliance on machines and the massive undervaluing of case histories - of people's stories. That goes for us too, not just people fighting mental health problems.
Until we start listening to the full story that patient's can - and given the time and respect they are due - will tell, we will always have the Wessley's of this world spouting off, and sick people being left to die.
Machines have a place in research, but even William Osler noted the over reliance on them causing poorer medical care back in the 1900s.
We are people, not machines, and need to be seen as persons who can speak for ourselves, rather than very, very limited machines alone speaking for us. So in a nutshell, stories before stats.
Hi Shell, you are arguing in support of counselling, which I approve of if the patient is the focus and they don't try to go beyond what is understood. Psychiatry is something else. The theories they use are largely unproven, and many are probably wrong. The "science" behind clinical choices that can be made is suspect.So much is still not known. Yes, there is an issue with lack of funding for research, but I wonder how much of that is a lack of funding itself, and how much is a lack of decent science to be funded. Throwing money at a problem does not fix it if there is not a rational plan ot make it effective.
The whole lack of time issue is another big problem in medicine generally, not just psychiatry. If someone just needs their blood pressure taken, its too easy. However for someone with a complex illness a whole hour per appointment might be a good idea - and save money in the long run. By shortening medical appointments the insurers save money per appointment. My best guess though is that total cost goes up. This needs proper investigation. When something like that was done on a program for homelessness here, they found the extra time and money spent led to major savings, savings that do not show up on an item by item measure. Making savings on individual items is useless if total cost increases. I keep making this point because I think it is important.
So much psychotherapy is unsubstantiated theory. Psychiatry needs a major change in how it operates. Its not that there isn't a need, its that the current methodologies are failing. By putting too much emphasis on the biomedical model there has been a loss of outcome measures - its too much about mechanisms and not enough about people, and most of the mechanisms are only guesses in psychiatry. With too much emphasis on social issues, you get support without cure. With too much emphasis on psychological issues, again the underlying biology is not addressed, while at the same time the social issues are left as problems. The so-called biopsychosocial model has good ideas, but their practice of almost entirely focussing on psychological issues is just psychology/psychiatry rebranded. The biopsychosocial revolution happened in name only. Its being used as an excuse to rebadge unpopular psychiatry.
Psychiatry tries too much to be seen as a strong medical science. Its failed. In my opinion it will continue to fail unless something changes. Psychiatrists need to be open and honest about the failings of the profession. Hiding problems does not get them fixed. Relabelling problems doesn't fix them either.
Another issue that happened is political agendas masquerading as medical science. The move to shift people with psychiatric illness out of dedicated homes and hospitals and into the community was a good idea if it had been properly funded, I think, but by putting them into the community without the needed support services its actually created more problems than it is worth. Instead of being a move to help people, it became a move to save money. The problem is that somebody pays sooner or later, they are fust fiddling with the accounts.
Similarly bean counter approaches to medicine sound good as they save money item by item. However if total cost increases it becomes a self-reinforcing nightmare. Costs go up so they have to save more money. As they save more money the problems go out of control, and costs go up. This trend is the exact opposite of what is needed in my opinion.
'' I find that the more I read of Wessely, the more I dislike him. It does mean that one can seem overly hostile towards him to those who have not read much his work though. Ah well.''
Esther12, I have read through some of my old posts and I have to say I do not recognise myself. Did I really say that about Wessely ? And then I remember how dreadful I was feeling at the time.
''The tide is visibly turning against them at the moment, in large part because their great hope, the PACE trials, were a flop''
Alex, those of you with the intellectual tools have systematically broken down the PACE findings and posted your thoughts on here.
Shortly after the PACE findings were announced, I remember the headline : ''Brain retraining can treat M.E.'' ( BBC )
A headline that was underpinned by the PACE trial results. We wouldn't be human if we didn't get angry at headlines like this.
Does anyone think that Wessely has wavered in his conviction that M.E is primarily a psychological disease ? The blood ban, Alter's ''i'm convinced it's viral'', Lipkin's ''It's not psychosomatic'', the list goes on.
He's never had to face that from such reputable scientists. If Wessely goes, the Wessely school goes. If the Wessely school goes it can be hoped that more funding will be chanelled into finding biological causes for this disease.
In my opinion money is now the only barrier that separates us from the life we once had.
Kind regards, Mark
It is my impression that psychiatric diagnoses/conditions are under funded more in the sense of allocated resources for treatment and management rather than for basic research. According to the NIH webpage on categorical spending (http://report.nih.gov/categorical_spending.aspx), Depression was allocated $426 million in 2011 vs $6 million for CFS in 2011. I could not find Anxiety per se, but Schizophrenia received $264 million, Mental Health received ~$2.3 billion, and Behavioral and Social Science received several billions in total (there are two categories).
If you have seen the movie "Rango", perhaps CFS funding could be somewhat compared to that small town of creatures in the desert, which is not only severely parched of water but what little water exists is being siphoned off for questionable projects, and not that far away is tonnes of water being thrown around by humans.
The biopsychosocial approach has been presented as cost-effective or cost-saving. This approach for CFS has basically been minimal testing or medical care, and herding patients into CBT/GET-like "management". However, patients are not generally recovering or getting back to work as a result, so this approach has failed to deliver significant cost-savings to society apart from the superficial at best, eg discouraging patients from seeking medical care, while CFS continues to be a huge burden elsewhere in lost productivity, welfare/insurance, and lost taxes. Even then, the PACE Trial showed that when taking into account the costs of CBT/GET, overall there are no savings in total service costs, at least in the first year.
I hate to say this, since I support some form of nationalized health care in the US. But even though (I'm sure) there are many kind and qualified doctors in the British NHS, the organization seems to represent a necessary, but disliked bureaucracy to many Brits.
And Wessley's opinions basically reflect a intrinsic hatred back at the patients. Not just CFS, all patients. If you are sick or injured, you somehow did it to yourself. I don't see grandstanding naysayers as much in this country. They certainly don't say things in such inelegant fashion. There are crabby flat-earth society doctors here, but they don't have access to public discourse as much as this joker.
In fact, no doc I have visited has ever blatantly called me depressed or a liar (which seems to be Wessley's modus operandi). Of course, I follow my own personal protocol of not coming off as desperate, insulting, attention-seeking, etc (ie, survival). To avoid feeding into Wessely protege docs simplified views of the world.
The NHS dates back to the end of WWII, and seems to be rooted in its basic philosophy of the time: pessimism and resignation. It doesn't seem to have changed much. We don't have universal health care in this country, so I guess the NHS is probably better in that respect. But as for future paradigms and solutions, I think those will come from other countries.
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