Indigo Jo's other blog

Readers will know their history might have heard of how Napoleon seriously contributed to bringing about his own downfall: he tried to conquer Russia. His troops were obviously nearly all French, and France has quite a mild climate -- parts of it Mediterranean and parts of it influenced by the Atlantic winds. They weren't equipped for the Russian winter, which is bitterly cold and frequently two figures below zero, so they couldn't fight and many of them froze.

A century and a half later, Hitler tries the same thing, and although Germany is further east and its eastern parts (especially then, when they ruled parts of what are now Poland) have a continental climate with cold winters, they were still no match for the Russian winter. Whether Hitler intended to make good his conquest of the near part of Russia or just to murder all the Jews is a matter of debate, but it's generally considered a bigger act of folly than Napoleon's, because the danger to soldiers of being sent into frigid conditions without the right clothing was already known of by then.

This came to mind when hearing about the ordeal a friend with ME in West Sussex is having trying to get treatment for a tooth abscess of some sort which has been causing her serious pain for the past few weeks. They have given her medication to fight the infection, but from what I hear, as soon as she finished the course, the pain came back. They have told her they will not operate on it until January, which is obviously quite unacceptable as she will be in considerable pain in the meanwhile, in addition to the pain and other symptoms the severe ME already causes her. She is bedbound and tube-fed after a major relapse four years ago. The damage to her teeth may, incidentally, be related to sugar-heavy prescription drinks she had to live on in the early stages of her relapse as she was able to chew and swallow solid food, before her swallowing became much weaker and she came to require tube feeding. The problems with her teeth are therefore iatrogenic, so it ought to be up the doctors to sort them out as quick as possible. Since these problems with her teeth started, her activities online have become somewhat sparser, so it's reasonable to assume her ME has got worse, which is understandable as pain is a stressor that can worsen ME (while ME itself can cause extreme pain), and has to be controlled, or its causes dealt with promptly.

Now, a few miles up the road from my friend, there used to live a lady with severe ME called Sophia. And a few more miles up the road there was a lady with severe ME called Lynn. Both of them are dead now, one of them because her mistreatment caused a catastrophic relapse when she had been getting better, the other because years of lying in terrible pain and enduring repeated, traumatic medical crises worsened by medical negligence, perverse disbelief and callous treatment led to her deciding she wanted to die, and ultimately taking her own life. Sophia and Lynn lived in different parts of Sussex to my friend (and to each other), and none of the staff who treated them are dealing with my friend, but surely everyone heard about their stories (especially Lynn's) on the news. In fact, ITV Meridian have covered ME quite a lot beyond these two stories.

The doctors treating my friend must have some idea of what they are dealing with. There have already been two well-publicised disasters involving women with very severe ME in less than ten years. They can surely learn to treat an ME patient decently without waiting for yet another serious tragedy. To send yet another sufferer out into the cold would be not only to make serious mistake, but to make the same serious mistake that someone else made with the full knowledge that it is a serious mistake. Which would, actually, be rather worse than a serious mistake. It would be a crime.

This is a trailer for Voices from the Shadows, a film about severe ME by Natalie Boulton, who edited the book Lost Voices (reviewed by me here), and her son Josh Biggs (her daughter, Anna Biggs, has severe ME herself and is featured in the book). The film features interviews with Kay Gilderdale, Criona Wilson (mother of Sophia Mirza, who died after she was sectioned by doctors who did not believe she had a real physical illness), Prof Malcolm Hooper, Dr Nigel Speight and other patients, carers and experts. The film is not available yet, but is expected to be premiered at a festival later this year.



There is also a Facebook group.

Esther Rantzen, for years, has been the go-to celebrity in the UK when it comes to ME, and has written of her daughter's supposed battle with it in the press (mostly the Daily Mail) on a number of occasions. Two separate "cures" have been reported, one involving Cognitive Behavioural Therapy (CBT) and the infamous graded exercises which mysteriously prove so harmful to pretty much every other ME sufferer. The second time it involved the Lightning Process, which is some sort of talk therapy based on neuro-linguistic programming (NLP), life coaching and osteopathy (although those who attended said they couldn't see any evidence of any osteopathy). At times, her evangelising has comfortably crossed the boundary of good taste; promoting this kind of therapy as part of coverage of the story of Lynn Gilderdale, who could not talk and probably could not have made it to wherever they were holding their course, is one example.

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A few months ago I put together a Wikipedia page on Lynn Gilderdale. It contained a potted history of her life, her illness, the events leading up to her death and her mother's trial, sourced from various newspapers, articles reproduced on various ME-related websites and a couple of the transcripts which are available on my blog. Although I found some comments she posted on others' blogs (she had her own, but it was friends only) describing her condition as it had been and as it was then (2005-8), I didn't use any of them as they were on pretty obscure blogs by people who might not want the exposure.

Now, someone (who, like a lot of those on Wikipedia, doesn't give his real name) has added a "notability" warning to the entry, which means that the subject might not have been important enough to merit inclusion. Lynn having been a wonderful person and a great friend to people all over the world doesn't mean she merits inclusion, but having been the focus of a major news story in the UK (not sure which country the person recommending deletion is in) and an important debate about the assisted dying issue, and being the subject of an upcoming book, do. Sophia Mirza (another severe ME sufferer who died in 2005) already has a page and nobody is suggesting that she isn't notable enough.

I intend to try and add more content regarding the post-trial assisted dying debate and the upcoming book in the next few days. It's not the first time someone has tried to trash my Wikipedia work - I did a whole page on Kesgrave Hall, where my old school (the really bad one) was situated, only for it to be carved up and for someone to insert a sneering note about me into one of them. The same person (an old school "friend") also posted a somewhat hostile biography of me on Wikipedia, and justified my notability on the grounds that I'd been mentioned (in passing, and not by name) in the Spectator. The editors of Wikipedia have since seen sense and deleted it.