A friend has asked me to post this and I thoroughly agree that this is an important issue affecting women in particular. People with M.E. may remember that one of the reasons given by McEvedy and Beard for the ‘hysterical’ nature of M.E. in their 1955 report on the Royal Free outbreak was ‘the high attack rate in females compared to males’. This post has some interesting info on the role played in this issue more recently by Professor Sir Simon Wessely.
On International Women’s Day, let’s remember that thousands of UK patients, especially women, are being diagnosed with medically unexplained symptoms or ‘MUS ‘, denied biomedical care and shipped off to psychological therapies instead. Those who wind up in the ‘Improving Access to Psychological Therapies’ or ‘IAPT ‘ programme will all be coded with ‘somatization disorder’.
The 2017 JCPMH Guidance for commissioners of services for people with MUS that promotes IAPT states that: “the risks or associated factors for MUS include being female” but the 1999 study cited for this statement reports that “physical symptoms were slightly more common in women, but this difference was not significant.”
Another study (2001) cited in the Guidance puts gynaecology at the top of the table for the rate of MUS in outpatient clinics. Except a different study reported in a presentation entitled “Complex patients” by Dr Alan Cohen FRCGP puts gynaecology in the middle of the table for MUS rates, with gastroenterology at the top.
A 2002 study, also cited in the JCPMH Guidance, reveals that there was no greater risk of MUS in women and comments that: “the absence of a female excess in the somatising patients was unexpected given that this is a near-universal finding in studies of medically unexplained symptoms. This highlights the role that higher consultations rates in females may have as a confounding variable in such studies.”
All 3 studies (1999, 2001, 2002) include Simon Wessely and Matthew Hotopf as their authors. Wessely was President of the Royal College of Psychiatrists (RCPsych) when the RCPsych acted as joint partner with the RCGP in the production of the 2017 JCPMH Guidance.
In 2003, Simon Wessely co-authored an article in the Journal of the Royal Society of Medicine entitled “Medically unexplained symptoms: exacerbating factors in the doctor–patient encounter” which said: “Factors predisposing to MUS are female gender…….”
Two of his own previous studies, including one published the year before, had shown that not to be the case.
So in 2017, as President of the RCPsych, was it not possible for Professor Sir Simon Wessely to prevent the publication of the misleading/discriminatory information regarding risks of MUS in the guidance for NHS commissioners?
- Joint Commissioning Panel for Mental Health (2017) Guidance for commissioners of services for people with medically unexplained symptoms (JCPMH), http://www.jcpmh.info/good-services/medically-unexplained-symptoms/
- Hotopf, M., Mayou, R., Wadsworth, M., et al (1999) Childhood Risk Factors for adult Medically Unexplained Symptoms: results from a national birth cohort study. American Journal of Psychiatry, 156, 1796-1800.
- Nimnuan, C, Hotopf, M, Wessely, S. Medically unexplained symptoms: an epidemiological study in seven specialities. J Psychosom Res 2001; 51: 361–367.
- Alan Cohen presentation – [PDF] Complex Patients
Reid, S, Wessely, S, Crayford, T, Hotopf, M. Frequent attenders with medically unexplained symptoms: service use and costs in secondary care. Br J Psychiatr 2002; 180: 248–253 http://bjp.rcpsych.org/content/180/3/248
Page LA, Wessely S. Medically unexplained symptoms: exacerbating factors in the doctor-patient encounter. J R Soc Med. 2003;96(5):223-7. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC539474/
18 thoughts on “MUS – International Women’s Day”
Never let the facts get it the way of a good theory. 😉
(Mind you: I would have thought more women would be involved in the Royal Free outbreak, just because nurses and hospital staff would have been mostly women back then.)
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exactly, but why didn’t patients get ill, was it something in their coffee..?
A long time ago I saw a possible explanation for this – that the staff were at work, on their feet and busy at work whereas the patients were mostly sedentary and therefore at rest
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It was because they were resting in bed
If you read Dr. Melvin-Ramsay’s reports of the outbreak, patients also developed this illness, as did very many from North London months before and after the main outbreak. Where are these people ?? I know one nurse who was present and was severly affected and never recovered !! (severely affected by the 1963/64 second outbreak), .at that hospital. So much for Mass Hysteria. How do these supposedly highly educated medics come to such a problem riddled conclusion ???
If they perpetuate the female prevalence often enough in the literature then it becomes a self-fulfilling prophecy. Thanks for this, Spoonseeker.
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Unfortunately, it has been women (especially nurses) who have treated me more badly than men. This includes some ‘friends’ so as far as ME is concerned I have not always felt any solidarity amongst women. Although generalisations are always a bit iffy I have found in my nearly 40 years of having ME that gay men have been the most sympathetic.
I don’t doubt your experience, but this surely shouldn’t be seen as a women vs men issue. This is about the public’s and medicine’s perception regarding who is susceptible to hysteria/neurosis/hypochondria, and how both men and women react to/engage with that. I suspect that it’s easier for people to believe that psychosomatic problems exist if they are seen as a more female trait, and women would then be more likely to be diagnosed with them. But men will be diagnosed too, and by female as well as male health staff who buy into the psychosomatic model. Indeed, women’s magazines and health books targeted at women seem prone to promoting the mind-body interaction theme that props up the psychosomatic approach. So PERHAPS men would be more likely than women to say ‘this is all nonsense’ and to give their doctor a hard time if it is suggested as a diagnosis, with women less likely to object?
We cannot ignore the fact that some NHS documents report that the gender ratio for MUS approaches 4:1 women: men while other studies show the figures to be much closer. That points to women being discriminated against in some settings, unless of course you believe that psychosomatic conditions do exist, that women are more susceptible and that they are being under-diagnosed in those other studies.
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“I don’t doubt your experience, but this surely shouldn’t be seen as a women vs men issue.”
I agree. “Divide and Conquer” is a popular strategy because it works. In our case it distracts attention from the fact that the Wessely School psychobabblers were hired by insurers and government agencies to promote this rubbish and protect profits. Our suffering won’t end until they are held to account in a court of law. I hope to live long enough to see that day.
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I agree but I could only speak from experience and the focus was on National Women’s Day which in itself implies that women should always be supportive of each other. In my experience this is not always so. My brother’s wife worked on a gynaecology ward full of female nurses and she said that most of them thought that women with M.E. were a load of whingers. I didn’t make it up. I wish that it had not been so.
As the partner of a woman who has suffered with ME for over 40 years I find no difference between men and women in how they treat my partner when they understand what the illness is about. There are ignorant men and there are ignorant women. The general medical profession male and female are sadly all too ignorant
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thankyou spoonseeker. One lives in hope that people like Simon Wessely and all his cronies, male and female, will one day be exposed for what they are and what they have done to people with ME and to women with other illnesses and diseases which their (the psychs)tiny brains don’t understand.
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So when NHS commissioners/bosses discover that more women are being diagnosed with ‘MUS’ and directed to psychological therapies instead of getting proper care, then they’ll think that’s absolutely fine, not a discrimination issue, because that’s what they’ve been told up front to expect by the so-called ‘experts’ . And we wonder why life expectancy is falling now in the UK, a real trend.
It is so so easy to measure the harmful effect of exertion on people with ME, so why don’t advocates focus on getting patients use wearables to demonstrate the abnormal HR responses to exertion, the worsening sleep patterns with exertion, the higher resting heart rates ???
Maybe what is needed is for people with ME to design, develop and implement a survey/data collection protocol that can be used to help demonstrate the impact of exercise/activity/exertion on physiology e.g. sleep data, morning resting HR, versus time on feet per day (as used by Dr. Lucinda Bateman) or steps as per activity meter or some similar metrics. Whining and complaining hasn’t got us anywhere in 30 years. Maybe its time to use objective data to move the goal posts…
Yes, there is ignorance about M.E. in the medical profession among women as well as men but the evidence shows that the patriarchal culture had a strong influence in shaping attitudes (eg via Beard and McEvedy). And the recent evidence presented by my friend in this post suggests that Simon Wessely is not above using the vestiges of this culture to further his agenda. This post is not, I think, about pitting men against women but about noting how those who have the power are choosing to use it. Am I right, T?
Yes Spoonseeker, you are right.
I would suggest that Wessely has used female gender prevalence in Medically Unexplained Symptoms (MUS) as a discriminatory/ prejudicial trope, (an idea that is perpetuated that cannot be substantiated), that in this case has, and for a long time, been used to undermine women’s healthcare in conjunction with the psychosomatic model. He clearly knows from his own studies that a female prevalence is not consistently found, indeed the explanation was offered in the 2002 paper as to how the apparent prevalence in other studies as a ‘near universal finding’ may be due to the confounding factor that women tend to consult their doctors more often than men. Yet this supposed female prevalence was reported in the 2017 JCPMH Guidance on MUS for NHS commissioners, citing a paper co-authored by Wessely that showed NO significant female prevalence. Wessely was presumably in a prime position (as President of the RCPsych) to check the Guidance over before publication, or at very least to flag up problems after publication. It is highly unlikely that he wouldn’t have taken an interest in this document that was co-produced by his college, since ‘medically unexplained symptoms’ is listed as one of his specialties under his ‘Interests’ on the website of the Academy of Medical Sciences, (of which he is a Fellow). In his 2003 article, published less than 2 years after his 2002 study, Wessely and Page stated that being female was a predisposing factor for MUS.
One of the themes for International Women’s Day 2019 was to ‘raise awareness against bias’. That was what I was seeking to do with this blog that was about MUS generally, and not about ME specifically. So whether there is a real female predominance in ME is not the issue here, rather the issue is the use of an unsubstantiated trope that encourages discrimination against patients with unexplained symptoms. It has the potential to do an awful lot of damage, and not just to women. If many medical staff (male or female) think that ME patients are ‘a load of whingers’, and that it’s ok to share that view, it’s not that much of a stretch for them to see all MUS patients the same way, and for them to feel free to discriminate against MUS patients on the basis of whatever personal prejudices they happen to hold or conjure up at the time. In fact, they are repeatedly encouraged to view MUS patients as a huge drain on the NHS coffers, and therefore an obstacle to/encumbrance on their work. Of course, not all health workers discriminate, but some may do so consciously and some unconsciously, believing that they are doing the right thing.
I’m not an ME patient and would not call myself an ME advocate. However, I have personally witnessed and completely understand the frustration and desperation of patients with ME who for decades have been ignored and left to suffer in dire circumstances by a medical profession that professes to care.
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Some advocates do encourage patients to use wearables to measure heart rate etc (notably Sally Burch) but such influence is limited, and we as individuals certainly don’t have the power to persuade doctors to take any notice or to view such a strategy as anything other than evidence of health anxiety. Perhaps it is reasonable to ask if patient groups such as the M.E. Association could do something more about this however?