The Times: My Mother, Munchausen’s and Me by Helen Naylor review — the tyrant in the sick bed

Garbage article from The Times that uses ME as a punching bag and misrepresents everything.


https://www.thetimes.co.uk/article/my-mother-munchausens-and-me-by-helen-naylor-review-7v8ts3w77

However, starting abruptly in 1991, when Elinor was in her thirties and Naylor was seven, her mother presented herself as having ME, also known as chronic fatigue syndrome. This is, as an acquaintance with a background in psychiatry explained to Naylor, in many ways the ideal diagnosis for someone with Munchausen’s: “There’s no tests, no treatment, no medical intervention. It’s the perfect hiding place for someone pretending to be ill.” Meanwhile, Naylor’s father’s genuine heart condition, which would eventually kill him, barely got any attention at all.

The other benefit of ME is that it comes with a ready-made community of fellow patients who are deeply invested in defending the reality of their illness against a sceptical medical community (it was unsympathetically nicknamed “yuppie flu” in the Nineties). Elinor became active in the local ME group, winning acclaim as a local health champion and producing the group’s newsletter. She was, in short, a “very successful ill person”. And no wonder, since not being ill at all meant she had a lot of energy to devote to it.​

Doesn't get any better after that. Or before.

 

Did she really fake ME or did it just look like it to an ignorant observer who picked up the idea that people with ME fake the illness?

 

I read Munchhausen's was debunked some time ago. But, unfortunately, it still seems to cling on.

As someone with evidence based proof of disability from ME, I am insulted that ME is usually portrayed as a fake disease.

ETA: a CBC article today talked about a family with an infant, who while crawling, then sitting up, fell backwards and hit his head. I think it was his left side that began to not function properly.

Two medical visits diagnosed a sprain. Finally the correct diagnosis, a stroke was pinpointed on the third consult. The article said the infant was making a good recovery.

Although Munchausen's has been debunked, if I was that Mom, I would have been concerned about that label.

 

I've not read the article, but if people can fake having cancer then they can fake having ME.

It could also be that this writer is being unfair on their mother. It's probably going to be difficult for us to judge.

The upside of ME being such a stigmatised condition is that it wasn't one anybody tempted to fake an illness would be likely to be drawn to. Any improvements in how the condition is viewed and treated could change that.

 

I don’t know if there have ever been any unambiguous cases of either Münchhausens or Münchhausens by proxy, despite its popularity in drama and popular fiction. Personally I would have thought that if you were planning to fake an illness for attention and a need for medical validation you would pick something that had historically been taken much more seriously than ME/CFS.

The article claims that CFS is in many ways the ideal diagnosis for someone with Munchausen’s: “There’s no tests, no treatment, no medical intervention. It’s the perfect hiding place for someone pretending to be ill.” However, you could argue the reverse, that it is a diagnosis most likely not to be taken seriously by the medical profession and is the ideal target for medics and psychiatrist seeking to misdiagnose Münchhausens, the lack of formal tests leaving people defenceless against dangerous over psychologisation.

We as a community are very aware anecdotally of the harms caused from such medical abuse that persists in such as the diagnosis of ‘persistent refusal syndrome’, which can result in sectioning to enforce harmful intervention based on inappropriate exercise and over activity. At least this no longer can done by citing the NICE guidelines as supporting exercise based intervention. There are a number of reported cases of people being sectioned, with the abuse only stopping following court intervention or when the individual becomes non ambulant and/or bed-bound, when they lose considerable weight because the strategy of making access to food contingent on prior exertion, or when even the abusers are forced to admit the reality of the individual’s health condition, they are discharged with a much worsened condition, and still no helpful treatment options.

Similarly parents have learned to lie about their child’s condition to avoid at least one specialist service instigating child protection procedures, because the child and/or the parents have recognised that such as graded exercise therapy was harming their child.

Though the evidence for this iatrogenic abuse is anecdotal, the cases we know of seem to be much more robustly reported than any cases put forward by the advocates of this as treatment. Certainly the anecdotal evidence of some form institutional inverse of Münchhausens by proxy seems more robust than anecdotal evidence for either Münchhausens or Münchhausens by proxy in patients.

Certainly I would not recommend ME/CFS to anyone seeking to use it to cheat the benefit system, going to work is if possible by a much easier, less stressful and more reliable way of obtaining financial benefit if you are able to do so. And anyone planning to use ME/CFS to gain medical attention, should also think again. My doctors appointments are inversely proportional to the severity of my illness and now averaging once every four years they may actually be lower than before the onset of my ME some thirty years ago.

 

Full article can be read here if you don't want to give them the traffic.

 

@Trish I can’t read the article as it is behind a paywall.

Fictitious Disorder imposed on self (Munchausen’s Syndrome) requires careful and considered evaluation by a psychiatrist who specialises in these disorders. I doubt that has occurred by the little I have read.

Fictitious Disorder imposed on another (Munchausen’s by Proxy) is not common but is looked out for in paediatric settings as it is a form of abuse but also requires careful assessment by a psychiatrist and paediatrician with multiple informants and medical evidence.

 

Yes.

 

As well, if one has incorrectly self diagnosed ME with the misunderstanding there are benefits to this, if a genuine health condition comes along, there may be a tendency for this condition to be dismissed. Putting this person in a situation a number of pwME have experienced.

ETA: ME is most definitely a genuine health condition. However, if people choose this to gain sympathy by self labeling with ME, the stigma wrapped around this disease will not provide them with what they seek.

If they then fall ill with another genuine health condition, they may be disregarded.

 

I have now read the full article, thank you for the link.

People with Factitious Disorder usually have a strong and verifiable history of childhood abuse and neglect causing major personality dysfunction and in my personal opinion, that personality dysfunction would have not just be shown at home - it would also have ben apparent to her GP, her local ME support group members, the author’s childhood friends and their family and other social and medical contacts.

I am finding it hard to accept the words of the reporter saying the author has compassion for her mother, if she did, she would not write a book about it and then publicise her mother’s mental health problems to the world. It seems cruel but clearly the author feels aggrieved by her childhood circumstances, which she also states she was not aware of until she was an adult and mother and this is all retrospective.

The mother was not assessed for Factitious Disorder at the time so I don’t believe that means the mother did not have ME/CFS. I think we all know there are times we have had to just ignore our illness and “rise to an occasion” for a specific life events (voluntarily or involuntarily) and then suffer the consequences after, with deterioration of our illness, but we do this because we want to participate in life (or have no choice but to - even just for a few hours but often for weeks/months). Her statements show a very simplistic and unfortunately popular societal psychological interpretation of ME/CFS “behaviour” and feeds into the BPS psychosomatic model which is now so hard to re-educate society to unhook this thinking as it has become so pervasive. The article also minimises the illness and patient advocacy in an inflammatory way.

The mother may still have ME/CFS since being “exposed by the medics for faking Parkinson’s” . I do hope the mother got all the scans and tests to rule out Parkinson’s Disease or other Degenerative diseases. Parkinson’s drugs also have a lot of side effects and can be very hard to get the dose right in people with the disease, so I am not overly moved by this observation. She would need her narrative confirmed, in writing, by professionals, for me to accept her reality, not just accounts by “NHS Doctors”.

If the mother does have mental health problems, I really hope she is getting all the support and care she deserves as blaming a person for having mental health problems they had no insight or awareness of, is stigmatising in itself, the mother could not control her childhood circumstances anymore than the daughter could.

 

Does the article not mention the mother died at a nursing home from* parkinson aged 69?

I read this story from the telegraph through snapchap. The author/woman who wrote the book said she wrote it so that her children would know the true story about her mother... It also said it was her husband who came up with the idea that her mother might be faking it.

Pay-walled so can't access the online telegraph so unsure if its the same as the one I read on snapchat

https://www.telegraph.co.uk/women/life/discovered-mother-had-lying-whole-life/

edit: can one die from parkinson? At least it said something about dying with the diagnosis at 69, which i thought was a bit early for a 'healthy' woman.

 

No, can’t get through that paywall either. This is useful additional information..…yes, you can die of Parkinson’s Disease, it a degenerative brain disease that causes dementia as well as movement disorders. It can develop early in some people. And people are more vulnerable to infections later in their illness. “Might be faking”, and then a whole narrative to suit follows, no evidence of Factitious disorder. Clearly just telling her children was not enough.

 

This is what the Times article says of the mother’s ’Parkinson’s’ and her death:

The article does not give enough information for us to be able to conclude if the mother did or did not have ME, and given the potential variability of the condition even within an individual, I don’t see how we can fully rule it out on the basis of what is reported.

I remember on one occasion, very early on in my ME when I was only mildly effected, at 4pm I was struggling to walk down the steps from my front door to let the dog out, at 8pm being persuaded to go out for dinner with friends and then at 2am dancing in a night club. It made no sense to me, so I don’t see how it would have any made sense to a child already feeling put upon. Alternatively around the same time, displaying the more usual ME pattern, visiting my allotment and getting so angry at the mess that I cut the overgrown hedge in one go, then twenty four hours later crashing and spending three weeks off work in bed. Again with a child’s perception of time, would this time lag between cause and effect make any sense.

Further, having an invisible illness is not incompatible with a problematic or difficult personality. My grandmother, was not an easy person. She had been a beauty when young and always had people ready to treat her as a China doll; her first role in life was to sit back and wait for an advantageous match, then the first ten years of her married life was spent living overseas with a full complement of servants. The ‘colonial’ life style really suited her: sitting on various verandas drinking tea and playing cards. The outside world didn’t really matter to her, even a revolution happening a few streets away while she was in labour with my mother was only a minor irritation when the bigger guns got a bit noisy. Most people saw her as utterly charming and delightful company, but in fact she had a will of steel and usually managed to get those around her to do exactly what she wanted. Fortunately for her, my grandfather adored her and ensured she was always waited on hand and foot. Unfortunately for my mother as a child, this was utter hell, especially when they returned to the UK and the nanny and the servants were replaced by just a daily. For my mother, her interests and ambitions were always suppressed to meet her mother’s needs: her clothes selected to complement her mother’s, her studies and activities selected to suite her mother’s tastes, and her pet dog being ‘sent to live on a farm in the country’ when my grandmother had had enough.

My grandmother in her fifties developed Parkinson’s disease, which was an illness perfectly suited to her temperament and preferred life style. The Parkinson’s gave her a perfect weapon to extend her control over the people around her. There was always an enormous divide between how the world saw my grandmother and how my mother saw her, with only an aunt who provided a lot of the child care for my mother and us grandchildren perhaps having a more balanced view. My mother was sympathetic to her mother’s Parkinson’s but by the time of its onset my mother had her own children, a life of her own and most importantly a husband willing to impose clear boundaries on his mother in law. I wonder though how my mother might have perceived her mother’s Parkinson’s if my grandfather had not retired early to totally devote himself to his wife’s care and my father had not been prepared to stand up to his mother in law.

Note, my grandmother’s Parkinsonian dementia, was the most genteel dementia I have ever encountered. In her own mind she spent the last few years of life in a grand Swiss hotel, watching the horse drawn sledges and the snow, and was far kinder to my mother perceived as the chamber maid than she had ever been to her as a daughter. She gently faded away muttering to herself with a chest infection that developed into pneumonia.

[added final paragraph]

 

from similar article in the Sun
"The diaries came to light five years ago, when Elinor died in a nursing home aged 69 after developing an infection."