Book published this week in UK referring to ME as psychosomatic

[eafw]

Is there anyone here who has the energy to draft a letter to Hay Publishing telling them of our concerns with regards to this book?

The publishers will support their author, as they should really. I mean, there's all sorts of nonsense written and published out there. That doesn't matter, and most of it is ignored.

But it's what happens afterwards - the relentless publicity campaign, the unquestioning reviews, the propaganda, the shoddy journalism, the slander of ME patients - it's full force from the psychobabblers and the mainstream press are happy to go along with this.

Let her publish, as I say there's all sorts of cranks out there writing books, but most of them don't have so much institutional machinery behind them pushing their crackpot theories and trying to close down any objections from the people who are suffering as a result.

 

[eafw]

If we are going to target anyone it needs to be the UK media, newspapers, radio and the festivals and everywhere else that gives these quacks a platform. There are so many other people out there that they can write about or put on their shows.

But, I was saying this in another thread also, we need to have something sorted before the event and not just react after. Charles Shepherd wrote to the TImes on behalf of the MEA - after the piece from Aaronovitch which praised the book, and had a good go at us - never published.

I do think things are turning though, we have more opportunities now to counter the lies of SMC and their cronies.

 

[Snowdrop]

@eafw

You may be right. The reason I posted that was because of this particular publishing house.
Louise Hay, the founder started her company with a publishing slant toward books that would help people and the earth. Proving that this book is in fact harmful might have an impact on the publishing house if they're seen to publish counter factual rubbish but again you're probably right that it really makes no difference to them so long as the dollars roll in.

 

[Seanko]

I have read the book & a general reader review is below.

Dr O’Sullivan is a neurologist working with diseases such epilepsy & MS. the book concentrates on conversion disorders where a patient suffer from neurological symptoms, such as numbness, blindness, paralysis, or fits without a definable organic cause. It is thought that symptoms arise in response to stressful situations affecting a patient's mental health. (Wikipedia)

The title & subtitle, “True Stories of Imaginary Illness”, suggest it is going to be a kind of medical freak show for the modern world, however it is much interesting than that and obviously blame should lie with the publisher for the freak show implications.

She talks about the large number of patients who she sees who have symptoms but do not fit into known disease categories. It is obvious she has large amount of empathy for the patients even when she cannot give them the answers or treatments they crave.

It is well written with one exception. She mentions in the chapter entitled “Rachel” that she is wary of including ME/CFS (Chronic Fatigue Syndrome) into a book on psychosomatic illness. She has good reason. The ME Association have quite rightly pointed out that it does not mention research in the last year which has indicated patients may have abnormalities in their blood cells and Cerebrospinal fluid(CSF) which suggest that is it is a genuine organic illness. A recent report by the US Institute of Medicine backs this up.

Apart from this, I would say the book offers a good overview of its topic including case studies and the development of our understanding of conversion disorders.

 

[Kyla]

I have read the book & a general reader review is below.

Dr O’Sullivan is a neurologist working with diseases such epilepsy & MS. the book concentrates on conversion disorders where a patient suffer from neurological symptoms, such as numbness, blindness, paralysis, or fits without a definable organic cause. It is thought that symptoms arise in response to stressful situations affecting a patient's mental health. (Wikipedia)

The title & subtitle, “True Stories of Imaginary Illness”, suggest it is going to be a kind of medical freak show for the modern world, however it is much interesting than that and obviously blame should lie with the publisher for the freak show implications.

She talks about the large number of patients who she sees who have symptoms but do not fit into known disease categories. It is obvious she has large amount of empathy for the patients even when she cannot give them the answers or treatments they crave.

It is well written with one exception. She mentions in the chapter entitled “Rachel” that she is wary of including ME/CFS (Chronic Fatigue Syndrome) into a book on psychosomatic illness. She has good reason. The ME Association have quite rightly pointed out that it does not mention research in the last year which has indicated patients may have abnormalities in their blood cells and Cerebrospinal fluid(CSF) which suggest that is it is a genuine organic illness. A recent report by the US Institute of Medicine backs this up.

Apart from this, I would say the book offers a good overview of its topic including case studies and the development of our understanding of conversion disorders.

Hi @Seanko
Welcome to PR.

The problem that many here have is not JUST with the author's inclusion of ME, but with the broader framework she is using for psychosomatic illness.
This model presumes that any illness which is not able to be fully explained (either by the doctor in question, or by current technology) is therefore by definition psychosomatic. In other words, lack of evidence is interpreted as evidence.
This can lead to dire consequences in the form of misdiagnosis of treatable organic illnesses, diagnostic overshadowing, denial of care, medical abuse and iatrogenic trauma.

It's not enough to slowly extricate illnesses one by one from this diagnostic trash heap as evidence emerges (and it often emerges slowly due to these theories and their proponents blocking biomedical research) ; We need to stop assuming without any objective proof (because there is none) that diseases are psychosomatic in the first place.

Posted earlier in the thread, but very relevant here:

http://www.diagnosticrights.org

• Nearly half of all patients with autoimmune disease experience denial of care before accurate diagnosis, an appalling 22 million patients.

• Because doctors continue to believe somatoform disorders affect mostly women, women are 7 times more likely than men to be mistakenly sent home from the ER in the midst of a heart attack, in the under 55 age group. Once sent home they are twice as likely to die.

• Most rare disease patients spend an average of 7 years in search of diagnosis, and during those years most mistakenly match criteria for SD to a tee. There are 30 million rare disease patients in the US coping with this problem. They outnumber cancer patients by 2 to 1.

 

[Seanko]

@Kyla Have you read the book?

 

[Snowdrop]

Hello @Seanko
Welcome to PR

It seems to me that there are other ways of looking at neurological symptoms that don't seem to be a result of a known disease.

Dr O’Sullivan is a neurologist working with diseases such epilepsy & MS. the book concentrates on conversion disorders where a patient suffer from neurological symptoms, such as numbness, blindness, paralysis, or fits without a definable organic cause. It is thought that symptoms arise in response to stressful situations affecting a patient's mental health. (Wikipedia)

Or, the fact that someone is experiencing distressing neurological symptoms where the origin cannot be determined is what is causing the anxiety and distress. There is zero evidence for these symptoms first being a mental health issue--anxious personality etc. Again, there is no evidence.

It would seem reasonable to expect that it works the other way round (organic physical symptom leads to distress). Many, many times symptoms with 'no definable organic cause' have been attributed to conversion disorder or other similar names.

It seems quite unbelievable actually that someone can will themselves blind or paralysed due to anxiety or any other mental phenomenon. Sounds like a kind of not so useful superpower. How is this achieved? By what means?
It seems anti scientific to suggest this so how does it fit in with medicine?

 

[Seanko]

@Snowdrop Have you read the book?

 

[Kyla]

@Kyla Have you read the book?

I have read every excerpt available online. As well as heard/read the author's own words on it.
While it may seem unfair to comment without reading the whole thing, there is quite a bit of it available. All of it nauseating. All of it based on zero hard evidence or scientific perspective. much of it misogynist. All based on outdated Charcot/Freud based theories. and all of it 100% regurgitation / consistent with every other treatise on this topic.

There is no way I could in good conscience pay money for this book.
Though it sounds like many others on this board have for the purposes of awareness and advocacy.

Have you read the rest of this thread?

Or the many other threads on the site about psychosomatic illnesses?

Or the posts by people on this board who have been denied medical treatment (sometimes in emergency situations) or mistreated based on the fact a doctor presumed ME was psychosomatic?

 

[Seanko]

@Kyla & @Snowdrop

Thank you for your greetings.

I would say the book is worth a read. I got it from my local library.

Dr O'Sullivan says around she can't diagnose 1/3 of her patients to an existing disease. She talks about conversion disorders which is a name given to patients with unexplained symptoms for which they might see a neurologist eg fits & seizures.

The problem is...how do you explain medically unexplained symptoms? Modern Medicine no longer differentiates between body & mind as each part of the part is inextricably linked.

 

[Kyla]

@Seanko
I am happy to say my local library does not carry it, and I certainly won't be suggesting they do.
Regardless, as I said it does not seem to add anything new to the discussion.

Being unable to diagnose 1/3 of her patients doesn't mean they actually have a conversion disorder, it just means she is unable to diagnose 1/3 of her patients. Judging by her ill-informed discussion of ME, she might improve that figure substantially by getting up to date on medical research.

Mind and Body are indeed interlinked, that doesn't mean that the actual physiological processes involved are trivial and open to wild speculation. Cancer is treated with chemotherapy and/or radiation, if that person also develops depression that can be treated with psychological/psychiatric treatments. These treatments are not interchangeable, and prescribing CBT as the primary treatment for Lymphoma would get one's medical license revoked.

As to Medically unexplained symptoms....they frequently become medically explained when we invest in adequate research. This was the case with every disorder previously considered somatization (some examples include MS, epilepsy, Ulcers, etc ).
In the meantime you might ask what we gain by labelling unexplained symptoms as "psychosomatic" or "conversion"? Since most proponents of these disease labels will be the first to admit there is no effective treatment.
On the flip side what people potentially stand to lose to these labels in much easier to quantify - their health (if they have been misdiagnosed), the support of family and friends, their ability to secure benefits to feed and clothe themselves, their dignity, their agency, and sometimes their freedom (in the case of involuntary commital).

you could look at the example of Sophia Mirza. A patient with ME who was erroneously diagnosed with Somatization.
She was involuntarily committed, treated abominably, and eventually died of her illness.
http://www.investinme.org/article-050 sophia mirza 01.htm

 

[TiredSam]

@Kyla & @SnowdropThe problem is...how do you explain medically unexplained symptoms?

The onus is not on Kyla, Snowdrop or anyone else to explain medically unexplained symptoms. The fact that they can't (and nobody can at the moment - that's why they're called "medically unexplained") does not prove anything. If somebody claims that conversion disorders are a thing, it is for that person to demonstrate that it is true, no-one else has to do anything except decide whether enough evidence / proof has been put forward to find it acceptable.

Pointing out a gap in current knowledge does not mean you are entitled to fill it with whatever nonsense you feel like. Perpertuating the myth of psychosomatic / conversion disorders is incredibly harmful, as has been demonstrated and documented (and personally experienced by many on this forum) over and over again.

 

[user9876]

@Kyla & @Snowdrop



The problem is...how do you explain medically unexplained symptoms? Modern Medicine no longer differentiates between body & mind as each part of the part is inextricably linked.

You start with an approach that says they are unexplained and then start looking for explanations. Forming a well-defined hypothesis and testing it. The problem with psychogenic explanations is that they don't do that. They take the approach we don't know therefore it is caused by the mind. Which actually does separate out mind from body.

I tend to think their methodology is very similar to the methodology of intelligent design. That is find gaps in knowledge and claim them for a given theory. They have a history of getting things wrong so why would we assume they are correct.

If they believe that people effectively think themselves ill then they need to look at mental representations and processes by which that happens. Yet I've never seen any research in this direction. They need to firstly give clear testable statements of their beliefs and then demonstrated experimental evidence to back up these statements. Scientific arguments should happen at this level but in that area they are not.

I suspect O'Sullivan's book is interesting from the perspective of documenting how neurologists view patients whose disease they can not explain and the way that psychogenic explanations are grasped at to avoid the admission of ignorance.

 

[user9876]

@Seanko
Cancer is treated with chemotherapy and/or radiation, if that person also develops depression that can be treated with psychological/psychiatric treatments. These treatments are not interchangeable, and prescribing CBT as the primary treatment for Lymphoma would get one's medical license revoked.

Apart from this probably happens quite a lot where someone goes to a doctor who fails to recognize symptoms associated with a cancer and recommends psychological counseling. Having known too many cases of doctors failing to act on early cancer symptoms that is a concern and I feel it is made worse by psychogenic theories that and an excuse to diagnostic failure.

 

[Valentijn]

Dr O'Sullivan says around she can't diagnose 1/3 of her patients to an existing disease. She talks about conversion disorders which is a name given to patients with unexplained symptoms for which they might see a neurologist eg fits & seizures.

The problem is...how do you explain medically unexplained symptoms? Modern Medicine no longer differentiates between body & mind as each part of the part is inextricably linked.

I think you (and O'Sullivan) are asking the wrong question. In the pragmatic context of a clinical situation, there is not a need to explain symptoms which are unexplained. All the doctor needs to do is say "I don't know" and investigate the symptoms appropriately.

But many practitioners do not like to admit that they do not know. Perhaps they feel that to say such a thing is to admit defeat, and that they owe their patients better. Perhaps they feel that medicine harbors no more secrets, and that everything relevant to physiological illnesses is already known. Suggesting the existence of a mysterious interaction between the brain and the body lets them off of the hook. They thereby dodge any suggestion of ignorance or fallibility, either personally or for their entire profession.

The appropriate venue for seeking an answer to your question is in the research arena. But it is impossible to prove a negative. How can anyone demonstrate an absence of physiological involvement, when we know very well that our technology is still incapable of detecting a great many things, especially in the human body? After all, an absence of evidence is not evidence of absence.

Thus psychosomatic hypotheses remain very much hypothetical. None has ever been proven to exist, and all there is to suggest them is the highly subjective interpretations of clinicians regarding individual case studies. But clinicians then make the mistake of thinking that their subjective observations are scientifically reliable and significant. Yet this is little different than believing that we can make it rain by washing our cars, because we think it has rained too often after washing our cars in the past. This type of observation is inherently subject to extreme bias, and it is not at all reliable.

And conversely, specific psychosomatic hypotheses for various diseases have been proven completely wrong, repeatedly. 40 years ago, Multiple Sclerosis was considered a hysterical disorder - until brain scans showed lesions. 30 years ago, AIDS was considered to be caused by the social stress of the homosexual lifestyle. Even today, many people still believe peptic ulcers are caused by stress, despite that it has been known for decades that they are caused by a bacteria and cured with an antibiotic. There are certainly more examples, but those should be pretty familiar ones.

Hence the suggestion that any psychosomatic disorder exists at all is 1) unproven, 2) unprovable, and 3) somewhat unlikely given the long string of specific psychosomatic hypotheses which have been completely disproven. Suggesting that psychosomatism is a proven or mainstream concept is inaccurate and misleading, and taking it seriously outside of the research venue is better suited to a pot circle than an authoritative text from a medical professional.

 

[Snowdrop]

She mentions in the chapter entitled “Rachel” that she is wary of including ME/CFS (Chronic Fatigue Syndrome) into a book on psychosomatic illness. She has good reason.

And yet when it came down to it: Include or not include--she choose inclusion. That's important. If there was uncertainty there was the choice to leave it out. But with conversion disorder it's too easy to cast a wide net.
There is no need to have evidence or proof there is no test.

Perpertuating the myth of psychosomatic / conversion disorders is incredibly harmful, as has been demonstrated and documented (and personally experienced by many on this forum) over and over again.

For anyone with a soft spot for conversion disorder diagnosis.
Tired Sam's quote is something to really give some time to consider. Real people have been misdiagnosed because their symptoms were not easily attributable to an obvious well documented testable illness. This isn't just some theoretical debate there are real consequences to peoples lives. Their families believe the Dr (authority) and treat the person as if they can just 'snap' out of it when they are actually ill.

Being unable to diagnose 1/3 of her patients doesn't mean they actually have a conversion disorder, it just means she is unable to diagnose 1/3 of her patients.

A third of her patients did not fit an organic illness diagnosis.
When conversion disorder is considered a reasonable diagnosis I guess there is no reason to dig further.
But on the bright side, now 100% of her patients have a clear diagnosis. Oh the simplicity and perfection of that paradigm.

Maybe some people have trouble with leaving a problem open and unsolved and feel the need to close the loop prematurely. A form of uncertainty anxiety.

 

[nasim marie jafry]

Increasingly, the five star reviews tend to have just a few words, ie not actually analyse the book. And more predictable (and inarticulate) rudeness about those 'complaining about ME':

http://www.amazon.co.uk/review/R2V3UCROBYACL6/ref=cm_cr_rdp_perm

And I love that 'Deirdre' just joined Amazon to tell us that O'Sullivan is 'brilliant and insightful': http://www.amazon.co.uk/review/R3VFSMDEP75TRM/ref=cm_cr_rdp_perm?ie=UTF8&ASIN=0701189266


What other patient population has to endure this exquisite nonsense?

 

[alex3619]

Any mention of conversion disorder as if its a real disease instantly gives rise to the issue that its a made up diagnosis still awaiting any validation. At no time in the history of this disorder, or any psychogenic disorder, has even one disorder been objectively validated. Medically Unexplained Symptoms are, funny enough, medically unexplained.

Unexplained does not mean not real. Since the 1940s three of the top clusters of symptoms have been objectively verifiable. Tests for these have been used by some doctors since the 80s but its only since about 1995 that this has been properly researched and published.

Similar issues arise with many of these disorders. Physical abnormalities that can cause the symptoms are known, and objectively verifiable. The problem is we don't know what is causing the abnormalities until research advances.

However even diabetes and MS are not fully understood either, despite (in the case of diabetes) a century of research. Technically they are medically unexplained too. Yet the symptoms follow real pathophysiology.

 

[alex3619]

The problem is...how do you explain medically unexplained symptoms? Modern Medicine no longer differentiates between body & mind as each part of the part is inextricably linked.

This is not the case. Its claimed, but not true. Some in medicine think this. Some don't. The whole issue with this view is that mind probably is a fiction. Its story, a label. What we call mind is simply a label for what we observe someone doing, including output of brain function.

Mind/body is a fictional issue.

I also think they are not separable, but because mind does not really exist. At all. We have thoughts, but these are just a function of brain. We have memory, again a function of brain.

Saying mind and brain are inseparable is old and untenable philosophy.

For the record my view can be considered a form of physicalist monist on mind brain theory.

MInd has never been proven. Nor has conversion disorder, nor any psychogenic disorder. This is extreme philosophy, not science.

 

[alex3619]

What other patient population has to endure this exquisite nonsense?

The MS population had to. Oh, and the peptic ulcer crowd. Oh, and any woman with breast cancer. And many cancer patients in general. Sigh.