ME sufferer died because she couldn’t eat

University graduate Lois Owen, 34, died after her weight plummeted to just 3st 2lbs | This is Derbyshire (also reproduced on the ME Association site)

Lois Owen achieved a first-class honours degree from the University of Derby while suffering from ME (or “Chronic Fatigue Syndrome”), founded a charity called Therapeutic Arts which provided free classes in painting, drama, poetry, sculpture and music to “help users express themselves and improve their learning”, and was observed to have a great concern for helping others, once seen talking to a homeless man on a station platform that everyone else passed by. However, in March 2009, she died after having been unable to eat for a long period because of ME: according to the report, she did not have the “energy” to eat although her mind was very active, as demonstrated by things she wrote during that time. When she died, her weight was 3st 2lbs (20kg).

The article doesn’t mention ME, but it does say she had a diagnosis of chronic fatigue syndrome (CFS) and relapsed several times; the charity mentioned (but not named) in the article as being interested in publishing Lois Allen’s book is Invest in ME, as they have revealed on their Facebook group (a friend of hers on that group said she had “the severest form of ME”). It appears that some professionals believed she had “anorexia”, although the anorexia (meaning a condition of not eating) associated with ME is not the same as anorexia nervosa, in which people do not eat because they believe they are overweight when they are not. Many people with ME are unable to eat normally for three main reasons: (i) they can’t swallow; (ii) they suffer very severe nausea or heightened sensitivity to taste; and (iii) eating is too much of a physical exertion. It is not unknown for professionals to treat an under-eating person with ME, who cannot eat for the second or third of those reasons, as if they had anorexia nervosa, as Emily Levick said happened to her when she was a teenager.

My first thought (and that of several others on the Invest in ME group) was to ask why she had not been tube-fed, and indeed whether this had even been considered given that it is nowhere mentioned in the article. Fitting someone with a nasogastric (NG) tube can be done in the home and sometimes carers can be trained to do it (sometimes even patients are able to do it), but the tube requires replacing every few weeks (or when a patient vomits and ejects it) and some patients are unable to tolerate the presence of the tube (and fitting a permanent tube, known as a PEG, requires a hospital admission and not all hospitals are able to do them). Often any mention of ME and related feeding issues brings to mind Lynn Gilderdale, who was tube-fed for more than 16 years as she was unable to swallow, but things that worked for her might not work for others, particularly those whose tolerance for activity is lower than hers was.

It was also suggested that she was the victim of psychiatric abuse, but it does not appear that her extreme suffering from very severe ME was compounded by abuse by doctors or nurses and that, in contrast to previous cases, a hospital admission was decided against — as the article says, “even Lois’s GP said the best course of action was to allow her to remain bed-bound, at home with a team of carers”. As anyone who has spent time in hospital (even as a visitor) will know, they are not ideal places for someone with severe ME who is hypersensitive: there is a journey to be made to get there in the first place, which could make someone more ill; they are often noisy, even at night; there are a lot of chemicals in use; and finally, there is no guarantee of getting a private room, even if one is immune-compromised, which ME patients often are, but it is essential either way. She had been sectioned in 2004, but this was because she threw herself from a window while hearing voices; after that, she remained an inpatient until October 2005, and was then treated as an outpatient until March 2006 when they discharged her completely, so it appears that the psychiatric profession did their job and then got out of her life, and did not interfere in her ME care at all. Not all psychiatrists believe ME is in their “territory” and many will refuse to treat an ME patient at the behest of a doctor who believes they are really mentally ill. (Some doctors will shop around for a psychiatrist to do this, as happened to Sophia Mirza, but not to this lady.)

Two lessons clearly emerge from this. One is that the medical profession really needs to learn to distinguish between the symptoms of ME, which may include an inability to eat or drink for the reasons outlined above, and those of mental health disorders which they have been taught that “CFS” is one of. This is all the more important because, despite the stories of quite untroubled and popular young girls suddenly going down with ME and their illness being mistaken for a psychological problem, some ME patients do have entirely unrelated mental health problems. I know someone who had both and whose doctors successfully diagnosed her with ME despite a long history of depression which had resulted in her being admitted to a psychiatric unit two years or so earlier, so clearly some do know the difference, but there is a lot of work to be done here if ME patients who are physically unable to eat are being misdiagnosed with anorexia nervosa.

The second is that we cannot always expect an adult patient to do what we might think is best for them, and in the case of ME patients this is often because something that might be better for their long-term well-being, or even survival, may cause intense suffering in the short (or even long) term. We do not know if she was ever offered tube-feeding, let alone if she refused it, but it is possible for her to have been so intolerant of any activity going on around her that she might have found this intolerable — Emily Collingridge, for example, once wrote that she had gone without painkillers, despite being in terrible pain, because she could not tolerate having someone in the room to administer them (or to wash her, or change her clothing or bedding). ME sometimes is that severe, and people do die of ME, which underlines the importance of well-targeted research into the bio-medical causes of ME and what can be done to cure it.

(There is another perspective on Lois’s case by Kaliya Franklin AKA Benefit Scrounging Scum.)

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