Max Pemberton: the red herring of ‘mental health stigma’ in ME

Max Pemberton, Daily Telegraph columnistWhy few dare tackle the psychology of ME at the Telegraph website

This article is by Max Pemberton, who has earlier written in the same paper about why ME sufferers are wrong to object to being called mentally ill, after the “death threats affair” of summer 2011. His stance is the same now as it was then: that people with ME object to this because there is a stigma surrounding mental illness and that being mentally ill does not mean being a faker. As someone who knows several people online and off with real mental illnesses which do indeed have a physical, neurological basis, I can say that this argument is a red herring. ME does not present as that kind of mental illness and is not being treated as that kind of mental illness at all, and neither are the sufferers being treated by the medical profession as if it were. (More: Occupy CFS.)

Pemberton also claims that the research into ME has produced “underwhelming” results in the search for a physical cause, and that the recent Lipkin study adds weight to the theory that ME is not caused by a virus. In fact, this study was only ever into murine leukaemia retroviruses, which raised a lot of what turned out to be false hope in the ME community, not viruses in general. The strongest contender for being the cause of ME was always the Coxsackie enterovirus, and the past epidemiological evidence and certain features of the disease (along with actual tests for it in some patients) strongly suggest that this is what causes ME. The fact that not all of what is commonly called ME is, in fact, classic enteroviral ME does not mean that ME is not caused by this or any other virus. There is some evidence that Lyme Disease is being confused with ME, for example. Dr Nigel Speight has reported that he has successfully treated some British “ME patients” for Lyme disease.

I also do not believe that the manner some ME patients find they are treated by doctors and other medical staff is adequately explained by the theory that it is psychiatric or even psychological. They are often treated rudely, dismissively, as if they were merely prima donnas acting out some minor trauma and wasting people’s valuable time. This is often the experience of very sick and frightened child and adolescent patients, and if they had suffered a trauma severe enough to manifest itself in an illness as severe as Lynn Gilderdale’s, it must be something pretty serious and should indicate that some compassion is required, but they experienced none.

So, this recurrent argument about “mental health stigma” is irrelevant to ME. If you want to campaign against that, I hope you wrote to your MP to encourage him or her to vote for the current mental health bill, which removes the restrictions on jury duty, serving as an MP or company directorship that affects some people with certain current or past mental health problems (particularly those who have ever been sectioned). Many of us are fully aware that there is a stigma affecting people with mental illness. The fact that when an ME patient says “I was treated like I was mentally ill” usually means “I was treated like dirt” is a sign that this stigma is very much alive. It is not why ME patients object to being treated as if they are mentally ill, however. The reason they object is that they are physically ill, and are facing pressure to accept unsuitable, often harmful treatments based on counselling and exercise, and because these psychological theories and the influence of those who support them may be the reason why a viable treatment for ME presently does not exist.

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  • Dannie

    I have severe M.E myself meaning I am bedbound. Getting to appointments means making a bed in the boot of the car to get me there as, due to orthostatic intolerance, sitting upright for more than ten minutes is excessivley fatiging. I wish M.E were psychological. Maybe then tne treatments our government offers (uk) might work. I studied psychology, massive interest of mine so welcomed CBT etc. I was very positive towards it and really thought this was going to help me get well. Ironicaly I got worse! As someone who used to go to the gym at the end of the road each day (I used to be very fit!) I really looked forward to the idea of GET. After GET I went from being able to do small tasks, leave the house a few times a month etc without negative effect to being bedbound, laying in a darkened room and wearing ear plugs to block out the sound I could no longer bare which for a musician is very fustrating!

    I have no problem with mental health problems. I worked in that sector for a while. I do have a problem with a physical condition being called something it is not. M.E, myalgic encephalomyelitis is coded by the World Health Organization as a neurological condition. CFS, chronic fatigue syndrome however is coded a psychological condition. Now the powers at be combined the monikers M.E and CFS as they are similar in the fatigue component. So M.E and CFS become CFS/M.E. This still doesnt make them the same condition, its just an umbrella term. Trouble is only one part of that umbrella gets treatment or heard. Treatment offered is of a psychological model only.

    Recent autopsies of M.E sufferers have found physical findings. Firstly, evidence of infection in the root ganglia, brain stem and secondly, damaged cells found in the spinal cord and fluid. I really dont think these findings can be ignored any longer! People do die of this condition. Not many, thankfully but it proves the point that M.E sufferers have been fighting about. Biomedical research is given so little funding (scandalously) but that has to change.

    Why should this, often vulnerable, patient group stand for being treated with disdain, stigma. Ive written a few articles on the way I was treated by nurses and doctors during a hospital stay. I was so shocked! I had my wheelchair taken away, water placed out of my reach, medicines with held etc. Few other patients groups would be treated like this. Sometimes I get so sick of fighting for some respect from nurses, doctors and occassionaly gp’s too. You can check out my blog at http://www.forgetmenotuk.me and see the posts on The cost of the Non believers if you do so wish.

    Thank you for writing this post. Its been very interesting indeed!

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  • Eileen

    Ive had m.e. for over 23 years, over 20 years ago I was doing what i loved but after a chronic virus and mercury accidentally put up a root canal I became so ill I collapsed with exhaustion on several occasions whilst at college, at the same time i lost most of my sight in one eye and from there I have suffered a wide range of serious health related complications seen in many m.e. sufferers. I have been self employed for over 12 years, dont suffer from depression, i have always been regarded as a generally very positive and motivated individual. To work i need to sleep an average of 14 hrs a day, which includes a 3hr nap between work. I have took part in various research and other testing which has demonstrated various abnormalities seen in various m.e. related research. I believe many factors have contributed to the M.E debate, one I believe was the very vague clinical definitions and very wide umberellas Dr’s and GP’s would use to assess if someone had m.e. At one time if someone was tired all the time had chronic fatigue, was feeling depressed, were post viral they had M.E. I am a therapist and im quite shocked at some of the clients who say they have m.e. just because they are tired after a days work, or if they couldnt manage that walk they used to manage..Luckily I have always had some clear abnormailities of something not quite right and have been taken into hospital on several occasions with very serious complications but i like most m.e. sufferers have faced complete discrimination and lack of professionalism as a young woman predominately housebound in my twenties i was told to by one clinician to get a boyfriend and my symptoms would go away. Pre-surgery a surgeon tried to refuse me an alternative anaesthetic her senior had agreed to give because she believed m.e.people were sufferers of mass histeria. What she didnt know was that on many occasions i had endured certain surgery without any anesthetic after serious problems and Dr’s concerns with various anesthetics. Also my expertise is relaxation, I think like most things unless people like Pemberton and Wessely were actual living with someone who had what i regard as true M.E. particularly those in the more severest scale, would they really know what their talking about. Perhaps the society we presently live in has played a major role in creating such dangerous schematic belief systems.

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  • Valentijn

    Wessely himself was party to a study showing that ME patients do not stigmatize mental illness: “The stereotype of CFS sufferers as perfectionists with negative attitudes toward psychiatry was not supported.” Wood B, Wessely S. Personality and social attitudes in chronic fatigue syndrome J Psychosom Med 1999:47:385-397

    Oddly, it doesn’t seem to have impacted his beliefs as expressed in other papers and to the media.