Professor Simon Wessely says he is misunderstood

[Enid]

Well they are indeed a pretty rotten ignorant lot - can we dispense with their scariness like it's monsters in your mind and spare the children from Freud.

If this man looks in he is undone - oft said not in the mind (whatever these idiots think it is vaguely) - cognition (like intellect never goes).

 

[GracieJ]

It is with great and profound relief that I heard from my son yesterday he is NOT pursuing his MCATs after all, pursuant to becoming a psychiatrist. Have been VERY concerned!! yet proud of him at the same time, though with me for a mother, he would have been either one very confused psychiatrist with the truth on one hand and the myth on the other, or a very conscious and conscience-driven caregiver with a mission.

 

[Enid]

So happy for you Gracie - psychiatry in such a muddle trying to usurp real medicine - very best wishes to him and you.

 

[maryb]

GracieJ - I share your profound relief Well done to your son however on his hard work.

 

[Firestormm]

It looks bad, but that's not how it would be interpreted by his intended audience.
To the intended audience, what it means, is that there is no widely accepted treatment for CFS.
So what do you do for a patient if there is no treatment?
You can only offer sympathy, understanding and support.

He does have a provocative way with words, which is probably symptomatic of his beliefs about the illness.
It's almost as if he is saying that nothing really needs to be done for the patient, beyond making them a cup of tea and brushing their hair.
It comes across as very patronising, and dismissive.
But if you believe that a patient is bed-bound because they are focusing on their symptoms too much, then this sort of attitude is not surprising.

But it needs to be read in context. Does he go on to discuss exactly what can be done for patients, in practical terms? What meds they can be offered. What personal care they can be offered. How to help them get well?

Or does he say that no personal care should be offered because that would reinforce illness beliefs?

When you refer to 'he' do you mean me? It's about delivery of care. Whether it is a nurse, occupational therapist or psychologist or GP or neurologist or my mother. What do you do when there is no clear understanding of a cause? Or a specific treatment?

And who is my intended audience Bob? My beliefs about my illness? Am I focusing on my symptoms too much, Bob? Is that what you are now thinking?

When all these alternate possibilities have been dismissed repeatedly through active engagement with medical professionals - what is they left for them to offer me? Huh? You tell me.

Come on. I really want to know. When all the possible psychological or psychiatric alternates have been checked and checked and checked and dismissed; what then?

What is left for them to offer in terms of care and management? I would suggest to you there is very little but what they do - under NICE - personalised and relative to my severity.

Is it &&&&&&&& frustrating? Of course it bloody well is. But my 'tea and sympathy' comment is essentially what is now available. That and some hard fought for understanding. Not bloody dismissal.

 

[Firestormm]

Gosh I don't believe I am reading this!

Whoever said that one MUST understand the clear cause of a condition or have specific bullet proof treatment to target root cause???? Those def help, but OMG where would we be if we only medically treated diseases with known root causes ? Ever heard of treating underlying pathologies, going as far upstream as possible, whilst waiting for further answers?

I said it. Did you see any quotes? No. So it was me.

 

[Firestormm]

It also strikes me that Wessely made mistake one as a psychiatrist, figuratively speaking: If a person is in your office for an appointment, that person 1) must have a psychiatric problem and 2) must need psychiatric care.

It makes me very sad that CBT has been used in this way. As presented in David Burns' book that came out many years ago, it is a very useful set of life skills and management tools, emotionally healthy ways of dealing with life that many of us just do not come into in the natural course of growing up with other human beings who also did not grow up with that skill set.

(Book title is Feeling Good: The New Mood Therapy.)

You know, Gracie, across 15 years. I think I have seen a psychiatrist twice. As rare as neurologists I suspect. For me, visiting a psychiatrist was as much about dismissing possible alternate explanations as it was including them. The only inclusion I have ever received from a shrink was depression along with ME when I was last trying to live independently but was stubbornly failing.

The psychologists and counsellors I have seen over the years are often the only ones who had the time to engage properly and discuss what I was having most trouble with coping about. They can't fix ME but they could help me gain some better perspective about what was causing me most trouble at the time.

What that did was to remove the anxiety of trying to live with ME and trying and failing to cope. I'm a stubborn buggar and never ask for help when I really need it, and they helped me to see that doing so wasn't a 'failing'. There has never been any attempt to belittle my diagnosis of ME from any medical professional (incl. psychiatrist and psychologist).

There has been frustration on both 'sides' and continues to be.

 

[Firestormm]

I posted what ended up being a quite lengthy response to that here: http://forums.phoenixrising.me/inde...-and-all-in-the-mind.13979/page-2#post-232012

...

The thread that was from started with me just complaining about Wessely, but it's ended up being somewhere that I tend to post my (usually critical) thoughts on papers of his that I've read. I've got a blasted cold that will not leave me alone right now, so am not really up to joining in these discussions, but if you wanted to look at criticism of Wessely you could look there. I'd be quite happy to have you point out any area where you may feel I'd been unfair, in the thread or via PM (PM might be better for me, as it would mean I could respond slowly without having the discussion move on *cough* *cough*. Might work better for you too if you're stressed for time).

I look forward to reading more Esther. Thanks. Get some rest and chicken soup - if you are not a vegetarian of course.

Now, we work to ensure that patients can trust their doctors. We make sure that thsoe who make misleading claims about the efficacy of treatments are removed from positions on influence. We make sure that doctors know that if the engage in the psychosocial management of patients, or work to encourage cognitions which are thought to be 'positive' without the informed consent of patients, that this is wrong. There needs to be an acknowledgement of and apology for the false claims which have been made about the value of cognitive and behavioural interventions for patients diagnosed with CFS.

Totally agree with you there. If there have been false claims then yes an apology or acknowledgement would be preferable. And there are some practitioners who do indeed (to my own knowledge) believe that by trying to convince their charges' they will recover totally if only they tried harder, who will over-advertise or beef-up their claims, and they should be winkled out and shot. It needs to be relative and personalised care etc.

I don't know how worthwhile it is paying the NHS to provide tea and sympathy to CFS patients, and think that our current state of ignorance about CFS means that there is little value in medicalising aspects of patient's lives. Were it not for quackery about CFS promoted by those working within the NHS, I think that lots of CFS patients would be more able to get tea and sympathy from their own social networks. .

It seems that I should have clearly stated that 'tea and sympathy' was a euphemism or one of those other things. Rather like when I said previously that modern medicine rarely amounts to an 'aspirin and a sympathetic and understanding ear'. Clinical delivery of healthcare is very much a 'suck it and see' service for us I would suggest. And that care and good delivery can require a lot of effort on the part of patients - any patients with any and all diagnoses - to find. It is bloody hard work and typically is needed most when we are not as capable of fighting for it.

I'd have much rather been left to decide for myself how to live my own life than have been 'cared' for according to the BPS model. Everyone's different, and patients should have ways of being able to request different services as they think are appropriate, but I don't think that there should be an assumption that, just because someone has been diagnosed with CFS, that there is anything that the NHS can do to help: it seems far from clear to me that this is the case.

As I said above - or perhaps didn't so much. If you engage to the best of your ability with what is offered and find it wanting - as I have - or inappropriate - as I have - at times then is that a reason to say it isn't helping others? Oh I see you have. Sorry. Need a break.

Different services - yes. But which? You know how the broad brush is delivered at the top and then it's left to local delivery? Well said delivery unless tried and at times necessarily fought for might help. Though I'm still not clear on what alternate service should be part of this service.

Let's say you are referred to various specialists - as needs are assessed - to essentially discount or discover possible alternate diagnoses or co-morbidities. Is that what you mean? That no access to onward referral should be closed off simply because we have this diagnosis? If so I totally agree.

There does come a limit though - as there surely must. Most referrals are triggered by a GP I would suggest. If a patient presents with new and unique symptoms then this could trigger a referral, or specific treatment, but are you saying that we should for example, keep returning to neurologists or immunologists as a matter of course (assuming they are not attached to the ME Service (if we have one) of course)?

Thanks.

 

[GracieJ]

Firestormm I think where psychiatry is wrong is that it tries to make normal human circumstances into disease states that need "treatment." I'm all for well-grounded healthy emotional coping tools and good counseling from therapists for life circumstances. So glad you had some decent experiences. Anyone with a chronic illness needs the best management skills available cognitively, mentally, emotionally because it is going to wear you down one way or the other.

There is another aspect to this outside of the psychiatric invented "conditions" that then need an invented "medicine."

I grew up with parents who thought psychology was a bunch of nonsense. Alas, they also had very poor people skills, and I grew up in an atmosphere of anger and fear that I am still trying to live down. The scapegoating that goes on within the family is ridiculous. Supposedly it is all about my having "depression" and since it was the 70s and no one knew how to "deal" with that, they are off the hook. That leaves me dealing alone with years of bad memories of abuse, since the whole problem apparently was ME. (Note sarcasm, and that is me as in me, not as in ME the disease.) I have doubt now at the phrase "clinical depression." The emotional and mental abuse I endured would send anyone into a situational funk. The mislabeling and its subsequent social stigmata as well as medical mistreatments have left my life a tangled mess, and in certain circles, I have a permanent large letter D on my chest. Not a fun way to go through life. The circular logic there is the insane part.

My point with that story is that sound psychology has its place, psychobabble aside. In our post-Calvinistic society -- and post "stiff upper lip" -- learning life management skills for good emotional health and healthy relationships is vital. It goes wrong when it crosses into pseudo medicine and politics, as in some of the life skills classes in the schools that are thinly-veiled tools of change agents for a socialist model. Fine line sometimes.

I am currently writing down the whole experience, and as my courage and emotional strength grow enough to handle the transparency needed to publish it, I will do so.

 

[Firestormm]

I think Wessely is of the belief that belonging to a social network (i.e. a support group) reinforces illness-beliefs, and therefore prolongs illness.
So I'm not sure if he believes that tea and sympathy are actually the best approaches to treatment.

The same for receiving welfare benefits: I think he believes that receiving welfare benefits reinforces illness beliefs.
My understanding is that some of the NHS clinics do not provide letters/evidence for welfare benefit claims because such letters would be a 'conflict of interest'. (i.e. they would not help the patient get better, but would reinforce the patients' belief that they are ill.)

I'm going from memory, so I could have some of this wrong, but I seem to remember seeing evidence for this.

There was. I'm not sure (can't remember) how correct it was.

I think what Wessely has rather consistently been saying - and others too I should add and certainly not in my experience by any means all of them psychiatrists or psychologists - is that being told to 'rest' and do nothing is not necessarily the best prescription.

And I think that came from his 1990 work relating to the prevalent advice at the time. I was certainly told by my GPs etc. to rest rest rest because you will get better. Didn't bloody work for me and I found it damn frustrating.

Perhaps no more frustrating than being 'activity managed' or not having a specific treatment in the shape of a medicine, but I think that's where he was and is coming from.

Of course he was referring I think to those who are not most severely affected. I was (when I referred to this above just now) but it was equally as frustrating. Rest and no treatment. Of course they then knew even less than they do today.

I still maintain that if you find an understanding deliverer of your healthcare then that is half the battle. Personalisation is key. Until such time as a biomarker is discovered what else is there?

 

[Bob]

When you refer to 'he' do you mean me?

Ah, that's an unfortunate misunderstanding...
I thought you were quoting SW... it looked like a familiar quote, and it seemed phrased oddly.
Sorry Firestorrm... None of my comments were directed towards you, at all.
I'll go back and delete them.

I guess that highlights how important it is to always find the original source of the quotes.

 

[Firestormm]

Ah, that's an unfortunate misunderstanding...
I thought you were quoting SW, because it looked like a familiar quote.
Sorry Firestorrm... None of my comments were directed towards you, at all.
I'll go back and delete some of them.

I guess that highlights how important it is to always find the original source of the quotes.

No worries mate.

 

[taniaaust1]

There was. I'm not sure (can't remember) how correct it was.

I think what Wessely has rather consistently been saying - and others too I should add and certainly not in my experience by any means all of them psychiatrists or psychologists - is that being told to 'rest' and do nothing is not necessarily the best prescription.

Wow.. Something I agree with him then. Resting by itself thou important and can esp help PREVENT ME getting worst (by making sure a person isnt over doing it) and by hopefully preventing the illness from getting worst probably improves the recovery chances (hard to recover when one is in a crashing state) but it usually isnt the full answer to this illness either as one needs to have it worked out what the coexisting things are eg POTS, reactivitating viruses etc or other things and having those treated so at least a person can be feeling a bit better and not have ones body so terribly messed up (which in turn could help recovery).

Symptoms need to be treated eg insomina, hypoglycemia, FM etc etc And I think this is a huge area where the Wesselly beliefs are letting people down as they dont encourage testing and dont encourage treatment of symptoms. They dont even want to recognise most of us have treatable some coexisting issues due to the ME.

Rest should only been seen an important part of treatment thou many do seem to recover in the first couple of years with just rest.

 

[taniaaust1]

It is with great and profound relief that I heard from my son yesterday he is NOT pursuing his MCATs after all, pursuant to becoming a psychiatrist. Have been VERY concerned!! yet proud of him at the same time, though with me for a mother, he would have been either one very confused psychiatrist with the truth on one hand and the myth on the other, or a very conscious and conscience-driven caregiver with a mission.

There are thou some good psychiatrists around. They do not all believe this illness is being held onto by illness beliefs

 

[Enid]

I'm sure there are (in the right circumstances good psychiatrists around ) but here in ME have broken the bounds of their limited medical knowledge by trying to wag the dog - shame on the profession.

 

[Bob]

Well, if anyone has any doubt, you've only got to read the following paper...

I've just had a flick through Wessely's most recent research papers listed on his website.
Most of the most recent papers are vague, pointless and/or meaningless, IMO, and not worth quoting, but this one is utterly incredible.
The whole paper is astonishing.
It's not very long, but it could be very depressing, if you're feeling low, so I wouldn't recommend reading it.
Wessely is a co-author, and it reads more like an opinion piece than a scientific paper.
Note that P. White and M. Sharpe are also acknowledged in the paper, for their help with early drafts of the paper.

I've selected a few of the worst offending quotes.

(This paper is unusually outspoken and polemic compared to his other more recent papers that I've looked at. The 2005 CFS review paper, which I quoted earlier, is far more reasonable and measured. This paper seems more like an emotional outburst than a scientific paper!)

INVITED REVIEW
The act of diagnosis: pros and cons of labelling chronic fatigue syndrome
Marcus J H Huibers and Simon Wessely
Psychological Medicine, Page 1 of 8. f 2006 Cambridge University Press
doi:10.1017/S0033291705006926
http://www.simonwessely.com/Downloads/Publications/CFS/179.pdf

"Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor of our times."

"Labelling physical symptoms as an illness carries the risk of the symptoms becoming self-validating and self-reinforcing, often promoted by the Internet, support groups, self-help literature and mass media."

"The ways in which CFS patients perceive themselves, label their symptoms and appraise stressors may perpetuate or exacerbate their physical and psychosocial dysfunction (Afari & Buchwald, 2003)."

"Many CFS patients, particularly in hospital settings, share a strong conviction that their symptoms are physical in nature. A plausible explanation is that biological illness attributions provide legitimacy, alleviate personal responsibility and protect against stigma (HortonSalway, 2001), as opposed to psychosocial illness attributions. As a result, CFS patients will seek doctors who offer explanations in keeping with their own illness beliefs."

"Diagnosis elicits the belief the patient has a serious disease, leading to symptom focusing that becomes self-validating and self reinforcing and that renders worse outcomes, a self-fulfilling prophecy, especially if the label is a biomedical one like ME."

And they include a short disclaimer:

"Although we have focused on psychological, psychosocial and cultural factors only, we do not wish to deny there are physical complexities of CFS that exist beyond our present scope."

I'm going to get hold of the whole 2005 review paper, and I'll report back about that, but it'll take me a while to get it.

 

[Bob]

By contrast, the following paper seems measured and reasonable, if a little pointless and fruitless, IMO.

(Further to our discussions about medical instructions to rest vs instructions to keep active, the following quotes seem relevant, from a 2008 paper, co-authored by Wessely.)

Etiology of Chronic Fatigue Syndrome: Testing Popular Hypotheses Using a National Birth Cohort Study
SAMUEL B. HARVEY, MRCPSYCH, MICHAEL WADSWORTH, PHD, SIMON WESSELY, MD, AND MATTHEW HOTOPF, PHD
Psychosomatic Medicine 70:000 – 000 (2008)
DOI: 10.1097/PSY.0b013e31816a8dbc
http://www.simonwessely.com/Downloads/Publications/CFS/189.pdf

"Participants who later reported CFS continued to exercise more frequently even after they began to experience early symptoms of fatigue."

"Continuing to be active despite increasing fatigue may be a crucial step in the development of CFS."

"The observed pattern of continuing to exercise, despite increasing fatigue, may be an important step in the development of CFS."

These quotes do seem to contradict the hypothesis that CFS is perpetuated by an avoidance of exercise, and deconditioning, which I think is Wessely's favoured model of illness. At least, that's what he seemed to be saying in his 2005 review paper, and its what the PACE Trial was based on.

And, similarly, in contrast to the hypothetical model of illness used for the PACE Trial:

"However, patients with CFS do not seem to have an exercise phobia (18), with clinical experience suggesting that many patients with CFS describe themselves as being very active before they developed CFS symptoms"

 

[alex3619]

I think, and I could be wrong as I have not done much reading on this lately, that the exercise phobia idea still exists in some discussions, despite the national birth cohort results. However, its about boom bust cycles. We still exercise, we do too much too soon, it exacerbates our symptoms, so we develop phobia.

If Simon and others at least acknowledged that exercise for those suffering post viral fatigue is a bad idea, it would be a start. That might decrease the rate at which post viral fatigue converts to ME, though there is no way to be sure without a formal study.

Its been some time since I read this study. I think I will read it again.

 

[Bob]

I think, and I could be wrong as I have not done much reading on this lately, that the exercise phobia idea still exists in some discussions, despite the national birth cohort results. However, its about boom bust cycles. We still exercise, we do too much too soon, it exacerbates our symptoms, so we develop phobia.

Yes, maybe they have hypothesised that the 'phobia' element comes later in the course of the illness.
But I've never seen this clarified anywhere.

 

[GracieJ]

Bob Thanks for sharing those papers. No doubt what Wessely thinks, even if he ever says he didn't write the paper! Why would his name be on it?? Walking contradiction, he is.