Holby City’s ridiculous bone marrow transplant story

Newspaper showing a girl with EB and her mother, with the strapline "Hope for Butterfly Child"Last night BBC1’s Holby City aired a quite ridiculous storyline in which a 16-year-old girl with the skin condition Epidermolysis Bullosa (EB) received a bone-marrow transplant from her sister, which is supposed to cure the condition. I had always thought EB was incurable (and if it could be cured this way, the EB charity Debra would say this on their website as there would be a great deal of interest), so I tweeted a friend who has the condition, and she told me the storyline was nonsense, that the treatment on display had killed babies with EB in the USA, and that she was refusing to watch it. Debra has a page about the storyline here:

Has BMT been carried out in patients with EB before?

Yes, two clinical trials of bone marrow transplants from healthy donors without EB into children with severe EB are currently ongoing in the US. Early results from the trial indicate that, in some patients, there may be some benefit derived from bone marrow transplants.

However, overall results are mixed and, sadly, there is a significant risk of death. Consequently, such trials are not planned currently in the UK.

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Posted in Health, TV | 1 Comment

Minimum wage undermined by fake self-employment

Self-employed business opportunity? No thanks | John Harris | Comment is free | The Guardian

This article exposes something I have had personal experience of in the past year, which is proper jobs (usually minimum wage jobs) being replaced by “self-employment opportunities”, in which the worker is paid directly and expected to look after his own taxes and National Insurance contributions, and commonly they are paid less than the minimum wage, which is quite legal as he is not actually an employee but a contractor. The Daily Mirror has been running a campaign, “Gizza Proper Job”, which exposes this behvaiour going on in a number of major companies including one that I’ve worked for (not on this basis), Hermes Parcelnet. Their full index of stories on the subject is here and sectors implicated include nursing, car manufacturing, hairdressing, telesales, doorstep energy selling, scaffolding, car delivery … you name it, it’s there.

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Posted in Economy | 2 Comments

PIP won’t cut the disability budget

Picture of Maria MillerLast Tuesday, BBC 5 Live’s morning discussion presenter Victoria Derbyshire hosted an interview with Maria Miller, the minister responsible for disabled people in the UK, and various disability activists including Kaliya Franklin of Spartacus Report fame, and Baroness Tanni Grey-Thompson, a former Paralympic athlete who is now a cross-bench peer (that is, a member of the House of Lords who is not a member of a party, either government or opposition). You can listen to it on YouTube here — the discussion goes on for just over 30 minutes.

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Posted in Disability | 5 Comments

Are Muslim women being left up on the shelf?

Picture of a man's and a woman's hands, with the woman's decorated in hennaWhy British Muslim women struggle to find a marriage partner | Syma Mohammed | Comment is free | guardian.co.uk

Syma Mohammed is claiming that Muslim women find it significantly more difficult than men to find a partner, as evidenced (she says) by the disproportionate number of women to men at various Muslim marriage events in the UK. She offers a number of explanations, including the fact that Muslim men can marry “people of the book” but women can’t (they must marry Muslims), and that Muslim men are likely to be able to get a wife from “back home”, while women are unable or unwilling to do this. I do not believe the situation is as rosy for Muslim men looking for wives as she makes out.

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Posted in Women | 1 Comment

Retail “work experience” is nothing of the kind

Picture of Cait Reilly outside Poundland in BirminghamWhy the government was wrong to make me work in Poundland for free | Cait Reilly | Comment is free | The Guardian

Cait Reilly is currently suing the government after the DWP forced her to leave a voluntary work placement in a museum to do one of their unpaid “training” placements in Poundland (for overseas readers, this is a chain of shops that sells everything for £1) which turned out not to be training at all, but two weeks’ unpaid shelf-stacking and floor-sweeping, something anyone can learn to do in under an hour. Ms Reilly had worked in retail before, as have I, and even till work does not require two weeks’ training — in my case, it took one working day to give us the “customer service” pep talk and to train us on the tills.

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Posted in Welfare, Windbags | Leave a comment

Just published: Kaliya Franklin interview transcript

I have just published a transcript of an interview Kaliya Franklin, one of the major authors of the “Spartacus” report I blogged about here, that she gave to Resonance FM which was broadcast yesterday (Friday) afternoon. I did the transcript because Kaliya’s voice is barely audible unless the volume is turned up, an effect of her disability, which makes it unsuitable for those who are deaf or those who do not have a quiet environment in which to listen.

You can read the transcript on this blog here or you can download it in PDF format here.

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Posted in Disability | Leave a comment

What I really wanted from T-Mobile

Picture of Samsung Galaxy S phoneThe other day I finally got round to changing my T-Mobile tariff from a £25/mo tariff which covers the cost of a phone, to a £10/mo SIM-only tariff (which was reduced to half that for the first nine months, which I really need now that work is getting less and less). I changed my tariff because I have a decent enough phone (a Samsung Galaxy S) and they didn’t have a better phone which I could have for the same money or less. They called me as I was on my way into London about a month ago, and they did that just as the train I was on was leaving Earlsfield station, and I knew that I would get cut off, and told the guy to call me back in ten minutes. He never did, which I consider really poor customer service.

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Posted in Android | Leave a comment

The Mail, Gerada and the alternative to DLA

Recently a group of people with various disabilities and chronic illnesses (some of them in very precarious health, two of them having been admitted to hospital in the last few days and two others narrowly avoiding it) compiled a report, Responsible Reform (or the “Spartacus Report”) which presented the real views of disabled people and the organisations which represent them on the proposed changes to Disability Living Allowance, which compensates people for the additional costs of being disabled and, unlike most other British state benefits, does not depend on whether the recipient is in work or not (in fact, it often helps people stay in work by paying for wheelchairs, adapted vehicles, computers and software and so on). This is to be replaced with a so-called Personal Independence Payment, the criteria for which are likely to be much stricter and will exclude a lot of people who presently receive DLA. The government’s excuse is that the current situation results in overpayments, to supposedly enormous cost to the taxpayer; the disability community contends that (according to the Department of Work and Pensions’ own statistics) the fraud rate is tiny and that much of the benefit goes unclaimed.

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Posted in Disability | Leave a comment

Nobody ever knows the heart of anyone else

The hearts of white people, part II « Abagond

I saw this post after a friend on a social networking site posted a link to it. The author, who claims his blog is a means of practising his writing by writing 500 words a day on any subject he likes (it seems to be a he, anyway), claims that White American racism cannot be accounted for by tribalism or “even … by mere power since, like their cousins the Nazis, they exercise that power in sick and twisted ways not commonly seen in others”. He concludes:

There is something else at work. My best guess is that it is a psychological disorder caused by the way they bring up their children. What White Americans would quickly call a pathology if it were found in black people. Whatever it is, it makes them unaccepting of people who are different and gives them a need to look down on and dehumanize others in order to feel good about themselves.

The author, who goes by the pseudonym Julian Abagond, earlier claimed that “white people are born with the same hearts as black people but, because power corrupts, power has turned their hearts to stone”, but has since revised his position because of having read Greek, Roman and Chinese history. The Bible, and modern American history (so he says) makes it seem as if genocide is normal. The other history shows that it is in fact rare. He had quoted Jared Diamond who had suggested that if Africans had invented guns and large ships, they would have been the slave-owners rather than the Europeans; although it was the Chinese who invented “gunpowder and the compass”, it was Europeans who put them to deadly effect in North America.

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Posted in Racism | Leave a comment

Why we protect vulnerable prisoners

Yesterday the two men convicted of murdering the black teenager, Stephen Lawrence, when they were teenagers were jailed “at Her Majesty’s pleasure” (effectively a life sentence), one for a minimum of fourteen years and the other for a minimum of 15, and the story has received extensive newspaper coverage, understandably given its significance in the history of British race relations — it uncovered a systematic racism in the London police and led to the abolition, nine years later, of the “double jeopardy” law which prevented anyone being tried twice for the same crime (the law still exists in the USA although people are sometimes tried on other charges). On two different talk radio stations this morning (Nick Ferrari on LBC and Vanessa Feltz on BBC London), I heard discussion of the “vulnerable prisoner” status the two men would be given, which would result in them being held in segregation (along with sex offenders) to prevent them being attacked by other prisoners. Feltz even invited listeners to discuss whether the use of taxpayers’ money to protect these two was justifiable.

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Posted in Crime, Racism | Tagged | 1 Comment

Getting used to my new Mac

Picture of my new Mac (with the external DVD drive on top) on my deskAs I think I’ve said before, my main present (from my parents) this past Christmas was a Mac. I laid out my reasons for wanting a Mac in a post a couple of weeks ago. I still have my old (2003) eMac, which can’t run any version of Mac OS X after Leopard (and in fact still runs Tiger, when I ever put it on, which I never do) and always intended to upgrade if I could ever afford it, or persuade someone to buy me one (or if there was ever one whose specification justified the cost). Back in 2006 I wrote a post in response to someone who said (in a long post on OSNews) why he would never buy another Mac, and said I would replace my old Mac with another, which in the event I didn’t (I’ve been using PCs with Windows and Linux since retiring that one). I’ve always liked the Mac OS, just not the hardware.

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Posted in Mac | Leave a comment

Jones will come back!

Picture of a man holding a pigThere is a scene in Orwell’s Animal Farm in which the pigs (who had become the ruling class of the post-revolutionary farm once Farmer Jones had been thrown out) and the other animals argue over who gets the apples. Snowball (later ousted violently) tells the other animals that, although he personally doesn’t like apples, pigs are brain-workers and need the apples to keep their brains working, otherwise the farm will cease working properly and Jones would come back — and if there was one thing on which everyone was agreed, it was that they did not want Jones to come back. This comes to mind pretty much every time there is an election in which the purported ‘left’ are defending their position, despite having betrayed those who voted for them.

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Posted in Politics | Leave a comment

Young people need to know that actions have consequences

Response: Sentencing of young adults should take their maturity into account | Comment is free | The Guardian

This article, by Vicki Helyar-Cardwell of the Criminal Justice Alliance, appeared in the “Response” section of the Guardian last Wednesday, and relates to an earlier report in which neurologists had said that the age of criminal responsibility in the UK (currently ten) is too low, based on a report issued by the Royal Society. Referencing the same report, there is an article on the paper’s “Joe Public blog” by Caspar Walsh, an author and journalist who works in a young offenders’ institution, that expresses the view that many young violent offenders, when not having to display their streetwise-ness to other inmates, reveal themselves as “vulnerable, damaged, frightened and confused”. The Royal Society report these articles refer to indicates that “key factors around decision making and impulse control are not fully formed until the age of 20 and that teenage brain development varies a great deal from person and is heavily dependent on a mix of upbringing, education, environment, and peer relationships”.

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Posted in Crime | 1 Comment

Laurie Penny and breast implants

French exploding breast implants — hilarious, right? Wrong | Laurie Penny | Comment is free | The Guardian

I’ve been following the story about the French breast implant recall with some interest, as it may affect someone in my family (I am not sure if her implants are from the company involved in this scandal). The French government has advised all women who received any of this company’s implants to have them removed; the British government has said that there is not sufficient evidence to justify the risk of putting women through another operation to remove them. What I am concerned about is the misconception put forward in Penny’s article, which appeared in today’s printed Guardian:

Breast enhancement is by far the most common cosmetic surgery procedure in both Britain and the US, and the number of operations continues to rise, despite the recession. A significant proportion of those surgeries are performed on women who have lost their breasts to mastectomy, or on trans people as part of gender reassignment surgery, but most are straightforward choices made by women seeking to make their healthy, normal mammary glands look a little more like the pert, rigid teats you see in the pages of Nuts and Loaded.

This is simply inaccurate. A fair number of women who receive these implants for cosmetic reasons do so because their existing breasts, though perfectly functional, do not actually resemble the breasts of any other women they know, let alone those in Nuts or Loaded (as if most women read those rags anyway). Some women become self-conscious because they have been bullied at school (as is the case with the family member I mentioned, as with someone mentioned in a story about this issue in yesterday’s paper), even by so-called friends, but either way, they want average-sized — or even below average, just noticeable — boobs. It is not fair to assume that they have all been brainwashed by the media, the patriarchy, or anyone else; it is a matter of being aware of not looking like other adult women. As plastic surgeon, Prof Simon Kay, said:

There’s a perception that women having breast implants are all bobble-headed bimbos looking for enormous pneumatic breasts, but this is not the case. They are ordinary women.

Quite.

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Posted in Gender, Health | 2 Comments

2011: the year Linux stopped being fun

In less than a week from now, I expect to be in possession of a Mac, most likely a Mac mini. It’s taken a long time since I last had an up-to-date Mac — I bought one in 2004, and had always planned to update it when it got long in the tooth, but by the time it did, I couldn’t find one that was affordable and had an acceptable specification. That’s largely changed now; although the Mac mini is expensive for what it is, it still has a decent hard drive and memory for the money. What’s also changed, however, is that Linux has become more of a pain to use and less likely to work on what must be fairly standard hardware. This has much to do with the drastic reworking the GNOME desktop has undergone in the last year or so.

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Posted in Linux | 8 Comments

Ayn van Dyk: seized for no reason, spends 10th birthday in care

Single father fighting to get autistic daughter back

This report tells part of the ongoing story of Ayn van Dyk, who was seized from her home, which she shared with her father and two brothers, after briefly going missing. She has severe autism although academically, she was (at least before being traumatically taken into care from school) close to her age group. The local authorities do not claim that Ayn was in danger from her father, Derek Hoare, but simply that her care was too much for him to manage along with two other children, one of them also autistic. They are still living with him. (Their parents split up some years ago, and she still sees all of the children, and has visited Ayn in care - the article explains why her father has not.)

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Posted in Asperger's / autism | Tagged | Leave a comment

Yes, but do they have ME?

Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics (at BMJ Open)

This morning several news sources reported that a study had been published by BMJ Open (the open-access section of the British Medical Journal’s website) which reported that around 1% of children (that is, 28 out of a sample of 2,855) were missing more than 20% of school over a six-week period due to what they called CFS/ME (Chronic Fatigue Syndrome / Myalgic Encephalomyelitis — interestingly, they do not call it Encephalopathy). Reports included this one from the BBC, this one from the Daily Mail (which gets points for featuring a genuinely sick-looking child, not a model pretending to be a bit tired), this one from the Telegraph, this one from the local Bath Chronicle and this one from the Guardian. The Guardian’s has a case study and the BBC’s report has an interview with Mary-Jane Willows of AYME, and a teenage girl sufferer.

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Posted in M.E. | Leave a comment

Why do lads’ mags offend more than the words of rapists?

Are sex offenders and lads’ mags using the same language? - University of Surrey - Guildford

A recent study carried out jointly by the universities of Middlesex and Surrey in the UK (press release above is from Surrey) have found that, when presented with quotes from lads’ magazines and from interviews with convicted rapists, men have difficulty working out which is which, is likely to identify more with a quote he believes is from a lads’ mag (which stands to reason, really) and often think that the quote from the lads’ mag is more offensive than the one from the rapist. Jezebel has a list of some of the quotes, with the answers at the end.

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Posted in Crime, Gender | Leave a comment

Review: Voices from the Shadows, British Library, London

A German version of this review can be found here.

Yesterday I finally got to see Voices from the Shadows, a documentary about severe ME produced and directed by the same people that produced the book, Lost Voices, (reviewed here) which told stories by a number of people with ME (mostly severe ME). This film, although including pictures that appeared in Lost Voices, concentrated on five people, all but one well-known to the ME community: Lynn Gilderdale, Naomi Whittingham, Linda Crowhurst and Sophia Mirza, as well as a young girl referred to only as “B”, who fell ill aged eight and is still severely affected at age 15. This is the last of four showings of the film, which previously showed in Norwich, at the Mill Valley film festival and at the IACFS/ME conference in September; the mother-and-son team behind it are currently looking at an American distribution prospect before considering a DVD or download release. (Other reviews: CFS Patient Advocate, Jenny K Rowbory’s dad, It’s Only ME …, Thoughts About ME.)

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Posted in M.E., Reviews | Tagged , , | 6 Comments

Baron-Cohen on Anders Breivik

Anders Breivik in a red coat, being accompanied in a car by a Norwegian policeman with a red and gold badge with the word "Politi" underneathAnders Breivik: cold and calculating, yes – but insane? (from today’s Guardian)

This article by Simon Baron-Cohen appeared in today’s Guardian and questions the diagnosis of paranoid schizophrenia given him by “independent” experts in a 1,518-page report this week. According to him:

This diagnosis … has surprised some people following the case because the 1,518 pages of Breivik’s manifesto do not appear to be the incoherent output of “thought disorder”, but instead read like a rather linear, carefully crafted tome. It is the work of a man with a single vision, a single belief that he wishes to prove to the world in exhaustive detail, and in a logical fashion.

That most people would find his reasoning deeply offensive, and his actions on 22 July monstrously horrendous, is a separate issue. The question remains whether a man who is so cold and calculating in executing his logical plan is sane or, as the court psychiatrists have suggested, insane. If this is confirmed, his thoughts and murderous actions are to be viewed as the products of a mental illness, requiring treatment in a hospital rather than punishment in a prison.

Baron-Cohen was interviewed in a Norwegian newspaper the week after the crime as he had just published the Norwegian translation of his book Zero Degrees of Empathy / The Science of Evil (the latter being the American title), which I reviewed here in June. He diverges into a discussion on cognitive and affective empathy; cognitive empathy (being able to discern others’ emotions and put yourself in their position) is impaired in autism, while affective empathy (being affected emotionally by others’ suffering) is impaired or absent in what he calls antisocial personality disorder, a subset of which is psychopathy. While not speculating on Breivik’s diagnosis, he writes that low affective empathy is necessary to bring about such an action, although it does not explain it entirely; his ideological convictions clearly played a part also.

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Posted in "Eurabia", Asperger's / autism, Terrorism | 1 Comment