Top critical review
1.0 out of 5 starsWho benefits from calling ME/CFS psychosomatic?
Reviewed in the United Kingdom 🇬🇧 on 29 July 2016
Review of 'It's All In Your Head'
Am I imagining that the original subtitle was 'True Stories of Imaginary Illness'? The copy I've just received appears to have replaced that with 'Stories from the Frontline of Psychosomatic Illness'.
This book, which consists of a set of case studies by a highly qualified neurologist setting out medical judgements about the status of her patients (that their illnesses are psychosomatic) has won a prize in a competition which specifies that the books entered must not be medical research. This seems to justify, or even require, the absence of references to the sources of her information.
Each chapter includes a section setting out the history of medical thinking about symptoms and illnesses which, depending on the state of medical information for the period, were 'medically unexplained'. (MUS, medically unexplained symptoms, has now become a psychiatric condition in its own right.). From Galen, through Beard, Janet, Charcot, Freud and more recent sociological theorists, we are led to, and encouraged to agree with the contemporary psychosocial thinking which has had such a negative impact particularly on attitudes and policies towards the disabled, especially those disabled by ME/CFS. Mo Stewart, in the article 'The Takeover By the US Private Medical Insurance Industry of the UK Welfare State', published by the Black Triangle Campaign for the rights of people who are disabled details this effect. Several of the psychiatrists who promote the psychiatric model have, or have had financial connections with medical insurers, and with the DWP.
A theme which runs through the book is how unwilling her patients are to accept any suggestion that their symptoms might have an emotional/psychological basis; how difficult a task it is for a doctor to impart this opinion to patients without inspiring anger and fierce denial. Patients, according to the author, are blind to their emotional difficulties, they are unreliable reporters, if only they would be willing to see a psychiatrist, their problems could be resolved. In the meantime, she asserts, the symptoms are random, inexplicable, impossible to make sense of. This very randomness is evidence of their origin in emotion, not a physical problem.
As a very experienced psychotherapist who has run a centre for people with mental health problems, I find that psychiatric difficulties are far from random and incomprehensible. The patient who is depressed has experienced much to be depressed about. Anxiety develops in a childhood where separations have occurred at an early age, or discipline has involved threats of abandonment. 'School phobia' is often actually concern for the safety of a sick, anxious, or abused parent. 'Blackouts', once physical disorder had been ruled out, turns out to be behaviour 'learned' in a family where mother was too exhausted by a husband with MS and a son with muscular dystrophy to pay attention to his healthy brother. Psychiatric problems do not drop out of the sky and without a narrative that makes sense of my patients' physical symptoms, I would send them for further physical investigation. 'Medically unexplained' does not automatically mean 'psychiatric', it means what it says.
In my experience, and Dr. Gary Kaplan, author of 'Total Recovery' which deals with chronic pain and depression, agrees...patients are excellent sources of information and very reliable reporters. All that is needed is for them to be asked, respectfully, the questions that allow them to provide the relevant information, and then to be believed. If, instead of trying to figure out tactful ways to impose her view that her patients has a psychiatric problem, the author took the time to listen to the patient's whole history, not just the medical report, it is likely to become evident to the patient herself that her symptoms are connected to various life events, and therefore realise she could be helped by a chance to revisit and resolve those issues.
In the book there are one or two cases in which the narrative leading to psychosomatic symptoms is clearly set out, in others it is hinted at. One patient is caught out as a benefits fraud'; one is clearly a hypochondriac, highly anxious, developing symptom after symptom as each is explained or dismissed.
The author discusses the evolution of thinking about psychosomatic illnesses with some significant omissions...according to critics of Charcot and Freud, their patients' 'hysteria' seems in retrospect to fit descriptions of prefrontal epilepsy. Breuer's Anna O (Bertha Pappenheim) is said to have relapsed and been institutionalised for several years. No mention of the fact that she went on to become a major figure in fighting for women's rights and education within the Jewish community, effectively creating the profession of social worker. But emphasising how symptoms can be created through the intense attention and suggestion involved in hypnosis lays the groundwork for this as a feature in psychosomatic conditions, and is undoubtedly part of the mechanism of genuinely psychosomatic conditions.
The author continually emphasises that patients are resistant to psychiatric diagnoses, that psychosomatic symptoms are random and variable, that there is no understandable pattern in psychiatrically caused symptoms. Symptoms can be created and magnified just by paying too much attention to them. Patients are unreliable reporters of their own experience.
Enter Rachel, and ME/CFS. The groundwork has been laid. ME has lots of variable symptoms, involving many organ systems. Sounds random. But even doctors who 'don't believe in ME' can recognise the complex pattern ... muscle weakness and pain, cognitive problems, problems indicating endocrine dysregulation..disturbed sleep rhythms, control of body temperature, and problems indicating ongoing immune activity (ongoing sore throat, swollen lymph glands, low fever) which vary in location and intensity, and all of which are exacerbated by exertion. A pattern so complex that it would be difficult to construct, or purposely create (and who would want to).
The author tells us that the first outbreak was at the Royal Free Hospital in 1955, when 'even the doctors and nurses' got sick. No, in hospital outbreaks, it is mainly the nurses..the most physically active, and the doctors who get sick. The patients, who are resting, rarely get it. No mention of Los Angeles in 1932, when it was called 'atypical polio'. Can't be EBV, everyone has antibodies to that. Everyone had versions of the polio viruses but very few got sick and even fewer got paralysed. (The ones who exercised after they got sick were the ones who ended up paralysed.).
Rachel, and other ME sufferers, report happy and relatively stress-free childhoods. No traumatic narrative. The author says this is impossible, she herself experiences stress every day. They are obviously in denial.
Rachel is a dancer, desperate to return to her chosen career. She insists ME is physical and wants to be treated with a drug that has been used in the U.S. for treatment of people with viral illnesses. The author points out that no drug has been authorised for use in ME. In fact, many have been tried and benefits found, but research trials don't involve significant numbers of patients, and it's difficult to find funding for research trials except those set up to support the psychiatric model. Such as the PACE Trial, which was funded by the DWP. However it has just been announced that Hemispherx will be trialling Ampligen in an Early Access Programme in Europe and Turkey, so a drug that has benefitted patients in the U.S. for years may now obtain the approvals previously withheld.
Rachel reports having been made worse by her treatment (CBT/GET). The author assures her that if a treatment doesn't work the first time, she must try it again. A recent article by Dr Mark Vint, 'The PACE Trial Invalidates the Use of Cognitive Behavioral Therapy and Graded Exercise Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Review', published in the Journal of Neurology and Neurobiology, Volume 2.3, March 2016 points out that any drug treatment with a similar rate of adverse effects would be immediately withdrawn.
Pain is a very common symptom, virtually everyone has pain. (No mention of years of severe, untreatable pain, as experienced by many ME patients.).
The author believes that ME/CFS is largely if not completely psychological. She says that in these illnesses, we need to consider what the patient may gain from it. In ME, these gains, after losing ones relationships, profession, status, income, home, previous activities such as sport, hiking, travel, may - or may not- include some sort of disability payment, some level of social help. Often not.
Who might have something to gain from the publication, favourable reviews, the award given to a book which supports this model of ME/CFS?
Or, if, as recommended by the US Institute of Medicine, this illness is recognised as a disease, not a psychiatric condition, in which 'exertion of any kind.....may adversely affect many organ systems'....who has something to lose?
