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No, this treatment won’t save Demi’s life

Indigo Jo Blogs - 3 May, 2018 - 17:43

Picture of Stanislaw Burzynski, an elderly white man with brown hair and a short moustache but no beard, wearing an open-necked cream/white striped shirt and a white lab coat over the top, standing in front of a red and green wall display with some images of brain scans on it.This morning I came across an appeal to raise money to help an 11-year-old British girl, Demi Knight, to receive ‘treatment’ for her cancer in Houston, Texas, from a guy called Stanyslaw Burzynski at a private clinic. Today the papers were reporting that enough money had been raised (around £25,000) to help Demi start the treatment (and that the family had “cut some corners” and borrowed money) but they were still soliciting money for further treatment as a ‘course’ can cost up to £150,000 including flights and accommodation. The story was repeated in the Lincolnshire local press (such as here and here but the Sun was also promoting the story. Doctors in the UK have told the family that there is nothing more they can do and that the cancer is spreading, is likely to affect her senses and movement before long as it is in her brain and spine, and that she has months left. What the papers have not mentioned is that the treatment is most charitably described as unproven despite Burzynski having been in business for 40 years, and that he is widely accused of being a charlatan who sells false hope for money. (More: Respectful Insolence with more detail about past cases and links to articles exposing Burzynski’s methods and behaviour, and his run-ins with the law.)

A few years ago BBC’s Panorama did a 30-minute feature on Burzynski (which you can view here) and interviewed two British families and one American couple who had paid money to Burzynski for his treatments. The two British families both had daughters who were ill, and one of them found that Burzynski’s treatment made her daughter very ill with hypernatremia, or high sodium in the blood, and she ended up in intensive care at the nearby Texas Children’s Hospital, which is intensely opposed to Burzynski’s methods because they always end up clearing up his mess, and a doctor they interviewed said she had never known a Burzynski patient to survive (and by the way: if a Burzynski patient requires treatment in another American hospital, it costs money — people go bankrupt because of medical bills there). The American man had gone to Burzynski because he did not want to take ‘traditional’ chemotherapy or radiotherapy, but Burzynski said he was not eligible for the antineoplaston treatment which is his top selling point, but prescribed a cocktail of other drugs instead. His oncologists back in Georgia were appalled.

Burzynski is opposed by the medical community at large because he does not share his methods or the results of his ‘trials’ with the wider scientific or medical community. He claimed when approached by the Panorama team that he could not reveal how many patients he had treated and how many had survived because of FDA (Food & Drug Administration) rules, but the FDA says otherwise. Burzynski prefers to sell his treatment to patients directly by means of a film (which can be viewed on YouTube here) and trading on conspiracy theories about the medical profession, “Big Pharma” and why they supposedly sit on cures for cancer. He has been in this game since the 1970s and if antineoplastons worked, they would have gone mainstream many years ago, much as is the case with laetrile, the chemical extracted from apricot kernels and bitter almonds which supposedly cures cancer (if you do not die from cyanide poisoning first).

Burzynski has been peddling this treatment as “experimental” after forty years — that is simply too long to be credible. It is not normal to expect patients to pay to be included in a clinical trial. Not a single randomised, controlled trial has been published in any peer-reviewed journal, and the American Cancer Institute says there is no evidence of a single incident of cure or even that any patient’s life has been extended. According to USA Today, the clinic mainly prescribes chemotherapy rather than ANPs (despite its supporters in past decades having used the slogan “say no to chemo”), but even this has raised the suspicions of the Texas Medical Board which has accused it of prescribing chemotherapy drugs in “random and unapproved combinations, with no known benefits but clear harms” (Burzynski personally got off that charge by claiming that another doctor at his clinic wrote the prescription). In short, what they offer now is nothing more than you will get in any British hospital, and quite possibly more haphazardly and less well-targeted.

I have been told I should not sneer at someone for trying what they can when all other options have been tried and “conventional medicine” has not worked. However, this is not alternative medicine but, simply, wannabe conventional medicine or bad conventional medicine. It is an adult’s prerogative to try things like this either when conventional medicine has failed or, indeed, instead of it, but to subject a child to unnecessary suffering for this is cruelty. The money for this would be better spent on a trip to Disneyland, as it will enable her to have a trip of a lifetime and enjoy herself before she becomes too ill to travel anywhere, rather than suffering through futile and haphazard treatment in a clinic thousands of miles from home, and then dying anyway.

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Money versus culture in care

Indigo Jo Blogs - 1 May, 2018 - 14:41

Picture of Oliver McGowan, a young white man with light brown hair combed from a parting on the left side, wearing a blue and white patterned shirt and a tweed waistcoat, standing in front of a large parasol.In the light of two recent inquests into the deaths of young men with learning disabilities, one in an NHS hospital (Oliver McGowan, right) and one in a Mencap-run care home (Danny Tozer), both of which resulted in very bitterly disputed findings of no neglect and no suggestion of error in Oliver’s case, Rosi Reed (mother of Nico Reed whose death in 2012 was the subject of an earlier campaign and inquest) retweeted a link to a blog entry she wrote in 2015 titled “What does good look like?”. She quoted at length from a speech in 2011 by Jim Mansell, a professor of learning disability in Kent who had pioneered living in the community for people with learning disabilities and had managed the closure of long-stay hospitals (such as Darenth Park in Kent), in which he said that “good services cost the same as poor services. Good services are not more expensive, they’re just better”.

He is right, up to a point. It’s certainly possible to spend lots of money and still deliver bad care, and the consultant who ignored multiple written warnings and administered the anti-psychotic to Oliver McGowan, who was suffering a seizure (not psychosis) and was understood to be allergic to the medication in question after a previous reaction, resulting in his death, was not an underpaid care worker but a senior medic likely earning a six-figure salary. Furthermore, such people are more likely to be given the benefit of the doubt when they make a fatal mistake in their work than someone in a less prestigious occupation, such as a chimney sweep, a gas fitter or a truck driver — such people have received jail sentences for mistakes of forgetfulness which have led to someone’s death. Monica Mohan, the doctor responsible in this case, is unlikely to face any sanction, because the coroner deferred to her ‘expertise’ rather than entertaining the family’s view that it reflected arrogance.

Money is no excuse for neglect, and the boards and managements of the institutions responsible often have enough money to pay themselves very generous salaries and to spend it on pointless PR and development seminars and so on. The novelist Diana Athill, when writing about her experience in a women’s retirement community in London, wrote that she was aware of care and nursing homes which charge fees much higher than hers (which, admittedly, was not a nursing home and was for generally healthy older people) but were much worse places in which to live. However, it is not the whole picture and to say that “good care is not more expensive, it is just better” lets the people who pull the purse strings off the hook. Underfunding often results in wages taking the biggest hit because mortgages, fuel bills and so on are less likely to give, and poor pay means it is difficult to attract and staff and especially the right calibre of staff. I have known people who had carers they trusted but who left because they were offered better pay in a care home or in another industry entirely; others left the area because they could not afford to live there on a carer’s wages; needless to say, this is a particular problem in areas such as London with high rents and house prices. It also means that there is less money for training and often less time to make sure a newcomer knows how to do some of the caring tasks and is aware of common hygiene practices. I have also been told by friends that carers who worked for agencies did not know some of these things.

It is a fact that capitalism tends to reward jobs that are most closely linked to making money with the most money; jobs that simply need doing but which do not make anybody any money are often paid as little as the employer can get away with. People resent paying taxes; a party promising a tax cut is more likely to win votes than one promising an increase, while there have been incidences of local councils running consultations, asking people what they would not mind paying more council tax for, and the people respond that they just want to pay less. In addition, the personal budgets which are now regarded as important to facilitate a disabled person’s independence can easily be portrayed, politically, as a large handout to an individual (even if wrongly). People might assume (certainly wrongly in a lot of cases) that a corporate body such as a care home (or a whole chain of them) might spend the money more responsibly and these bodies are better able to lobby politicians than disabled individuals and their families. There is also pressure from councils to double down on conditions for employed carers, by using zero-hours contracts instead of regular employment.

Many of the things Professor Mansell advocated in that speech — services being person-centred, treating the family as experts rather than as an annoyance or obstruction — are not things money can buy on its own, and the signs of a badly-run home such as staff talking to each other rather than with the residents and not knowing what to do unless they are told, can be found in places which charge high fees as well as those which charge less. However, to maintain a culture of person-centredness and empowerment, especially in this day and age when those things are not yet the norm, it is necessary to have the resources to pay staff so that there will not be a high turnover of staff as people find better-paid jobs elsewhere or leave a region because of unaffordable costs of living.

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Ukip leader plans to move party towards hard right

The Guardian World news: Islam - 1 May, 2018 - 14:35

Gerard Batten urges people to read Qur’an to ‘educate’ themselves about Islamic threat

Ukip’s new leader, Gerard Batten, has reiterated his intention to move the party towards the hard right by urging people to read the Qur’an so they can “educate” themselves about the threat posed by Islam.

Batten, who took over in February after the removal of Henry Bolton, repeated his belief that Islam is inherently antisemitic and the Labour party is deliberately tolerant of the prejudice in order to attract Muslim votes.

.@UKIP leader @GerardBattenMEP claims there are degrees of anti-semitism in the Labour party because it “depends on the Muslim vote in inner cities and the Islamic religion is inherently anti semitic”. #Peston pic.twitter.com/rBd8YvolEr

Related: Labour has not done enough to tackle antisemitism, says shadow minister

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Court's niqab ban led to miscarriage of justice, Sydney hearing told

The Guardian World news: Islam - 30 April, 2018 - 08:43

Religious beliefs meant woman did not give ‘crucial’ evidence about police raid, lawyer says

A Sydney Muslim woman suffered a miscarriage of justice at her terrorism raid lawsuit because she was not allowed to give evidence with her face covered, an appeal court has been told.

The “deeply held religious beliefs” of Moutia Elzahed meant that she did not give “crucial” evidence about her version of what police did during the September 2014 raid, her lawyer, Jeremy Kirk SC, argued on Monday in the New South Wales court of appeal.

Related: Woman cannot give evidence in a niqab, Australian court rules

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Fun, fashion and halal lipstick: retailers cash in on £200m Ramadan economy

The Guardian World news: Islam - 29 April, 2018 - 06:59
Store chains plan special offers, products and events for month of fasting

Muslims observing Ramadan are increasingly being targeted by supermarkets and brands in the UK, which has led to a rise in spending on food and gifts during the month, according to new research.

The Ramadan economy in the UK is worth at least £200m, with supermarket chains such as Tesco, Sainsbury’s, Asda and Morrisons increasingly gearing products, displays and special offers on popular food items to Ramadan in areas with significant Muslim populations. This year, for example, Morrisons is selling a Ramadan countdown calendar, similar to an Advent calendar, aimed at children.

Following only Christmas and Easter in scale and size, this is surely Britain’s biggest untapped business opportunity

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When women were forced to choose between faith and football | Shireen Ahmed

The Guardian World news: Islam - 28 April, 2018 - 09:00

History tends to overlook the incredible contributions of women in football, which is why it is important to tell the story of Fifa’s hijab ban and those who helped overturn it

Football is full of incredible histories, many that remain undocumented and unknown. In particular, women’s football history gets left aside. There are efforts by historians and football lovers to educate the public on the incredible contributions of women in football. On International Women’s Day I was at the National Football Museum in Manchester for a women’s football conference to present on football and the hijab to a room of academics and researchers. Although there is much to be celebrated, there is still a sordid past that, as footballers, supporters and writers, we must understand in order to do justice to the beautiful game. There are stories that are hard to tell but must be told.

Related: Nike's Pro Hijab: a great leap into modest sportswear, but they're not the first

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The Wadsworth affair and the “anti-Semitic trope” gambit

Indigo Jo Blogs - 27 April, 2018 - 22:31

Picture of Marc Wadsworth, a middle aged, portly Black man with a receding hairline, wearing a red jumper with a black jacket over it, holding a microphone. The forehead of a white woman in the audience can be seen at the bottom.So, today a Labour and Momentum activist (and film-maker and co-founder of the campaign for justice for Stephen Lawrence) named Marc Wadsworth was expelled from the party by the National Constitutional Committee (NCC) for “bringing the party into disrepute and embarrassing the leader” by making an accusation to the Jewish Labour MP, Ruth Smeeth, that she was “working hand-in-hand with the media” to discredit the party leader, Jeremy Corbyn, at a launch event for the Chakrabarti report into anti-Semitism in the Labour party in 2016. Wadsworth, who was represented by Harriet Wistrich (best known for her work on domestic violence) has said he is looking into ways he could challenge the ruling but also said that Corbyn had told him after the event that he could have used “kinder language” but has also said he is not embarrassed by Wadsworth. The Derby North MP, Chris Williamson, condemned the ruling, saying it “flies in the face of the evidence presented and offends against the principles of natural justice”, suggesting that it was the result of predetermination; an unnamed former Labour staffer wrote to the party’s general secretary accusing Williamson of “[bringing] the Party into disrepute by questioning and undermining the impartiality of the NEC and the NCC”.

The comments made to Ruth Smeeth were deemed anti-Semitic because they supposedly echo an “anti-Semitic trope”, that Jews “control the media”. This particular type of accusation, rather than the use of explicit anti-Semitic slurs, expressions of hatred or threats of violence, have formed the bulk of claims of anti-Semitism within the Labour party. Other such ‘tropes’ include the claim that Jews control the financial system or the entertainment industry or that they rule the world from behind the scenes as some sort of conspiracy. The problem is that some of the accusations relate to suggestions that fall far short of any of these tropes by people who do not believe those things and indeed would regard all of them as ridiculous. There is a big difference between saying that the west supports Israel because of the influence of a “Jewish lobby” and saying that Jews control the west; if they had such control, they would need no lobby after all. For anyone wondering why the West supports Israel with, in the case of the USA, billions of dollars of aid (including military technology and firepower) a year despite its rhetoric of human rights and democracy and the denial of these things to the native Palestinians, it’s a quite natural conclusion to come to.

Similarly, there is a wide gulf between saying that Jews have strong connections to the media — the major broadcast and print media — and saying that they control it. In the UK, none of the major newspaper proprietors is Jewish, but a fair number of Jewish columnists get print space in most of the broadsheets every week, and this goes for the left- and right-leaning papers. To say that they are, in general, a prosperous community is not to say that they are “all rich” or that they own all the banks (they do not). And I have even seen it demanded that we not call Israeli soldiers and settlers who kill Palestinian children “bloodthirsty”, as this echoes the “blood libel”, that Jews kill Christian children to use their blood in matzos at Passover — a myth that originated in England with a child found dead and mutilated in the then Jewish quarter of Lincoln, probably the result of a sex attack, but which has been repeated in Arabic propaganda films lately. This term is very commonly used of people who kill for no reason or seem to take delight in doing so; the blood libel is probably the furthest thing from anyone’s mind, especially when the dead are not even Christian anyway.

We often see it demanded that non-Jews not ‘presume’ to say what is anti-Semitic and what is not. However, even if we leave this up to Jews, the question remains of which Jews, since the Jewish organisations that are usually most ready to make such accusations are also wont to claim that dissenting voices are not Jewish enough; the former are generally ‘eligible’ Jews who are synagogue-goers or who would be welcomed into one, rather than people merely of Jewish origin, not all of whom are religious at all. The problem here is that the most convinced anti-Semites do not make any such distinction; racialised anti-Semitism emerged only when Jews started to become integrated into European societies and some greatly modified or abandoned their religion — that ‘integration’ is precisely part of the conspiracy. The same is true of Muslims: there is a Muslim definition of a Muslim which excludes such groups as the Qadianis (Ahmadiyya) and Isma’ilis, but racists do not usually care for this distinction, especially if their objection is to non-white people or ‘foreigners’ rather than Muslims as such. The people most likely to make accusations of anti-Semitism based on tenuous connections to “anti-Semitic tropes” seem to be the first type; the second are less likely to be noticeably Jewish, but also have little or no connection to Israel, and so are less likely to use “anti-Semitism” to attack anti-Zionism.

We cannot trust people who defend an oppressive régime and who would use accusations of racism to defend it, to ‘define’ what is a manifestation of that prejudice and what it not. If it really is to be “left to Jews” then it must be people of Jewish origin in general and not merely those in the ‘mainstream’ (modern-Orthodox, Zionist) Jewish community. It does appear that the effect of such demands is that people have to watch what they say in the presence of white people, and white middle-class people in particular, lest the person turns out to be Jewish and their comment can be interpreted as an “anti-Semitic trope”. After all, it is generally accepted that white people cannot be victims of racism as such, because racism involves power and not just prejudice, but whites can hide behind their Jewish minority and eagerly echo claims of anti-Semitism whenever an uppity member of a minority (or an outsider to the posh media clique) needs to be silenced. If that’s not what is intended, then one might consider the doctrine that the intent is irrelevant and it’s the impact (including on a third party) that counts — a fairly well-recognised doctrine among anti-racism activists and one that is very convenient to and much utilised by people making false accusations, including of anti-Semitism.

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Judge rules coroner's 'cab rank' policy discriminatory

The Guardian World news: Islam - 27 April, 2018 - 12:42

Jewish and Muslim groups welcome decision that beliefs can allow funeral to be expedited

A senior coroner has been ordered to abandon a “cab rank” policy on hearings after a high court judge ruled it was unlawful and discriminatory as it refused to take account of religious beliefs.

Mary Hassell, the coroner for inner north London, was told to draft a new policy that met the needs of all members of the community.

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Islamophobia not an issue in the British press? You’ve got to be kidding | Miqdaad Versi

The Guardian World news: Islam - 27 April, 2018 - 11:30
I’ve personally complained and won corrections from national papers on more than 40 stories related to Islam and Muslims

This week the home affairs select committee’s inquiry into hate crime turned to Islamophobia and the press. Many greeted with surprise the idea expressed by one witness: that anti-Muslim sentiment wasn’t much of an issue in the mainstream media.

Related: Daily Express editor calls its front pages 'downright offensive'

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Supreme court appears to lean in favor of Trump's right to impose travel ban

The Guardian World news: Islam - 25 April, 2018 - 19:26

Key judges signal support for president’s authority, as court weighs whether his motivation was national security or religious animus

Two key judges on the US supreme court signaled support on Wednesday for Donald Trump’s authority to impose his controversial travel ban on several Muslim-majority countries, as fierce arguments raged before the bench in Washington.

Chief justice John Roberts and Justice Anthony Kennedy, the two most likely swing votes on the nine-judge court, both expressed skepticism over attempts to undermine Trump’s authority on what the president’s side insists is a matter of national security.

Related: Tears, despair and shattered hopes: the families torn apart by Trump's travel ban

Related: Despite California's liberal image, half favor travel ban and more deportations

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Passages from the Bible discovered behind Qur'an manuscript

The Guardian World news: Islam - 25 April, 2018 - 10:30

The only recorded palimpsest in which a Christian text has been effaced to make way for the Islamic holy text is to go on sale at Christie’s

An “extraordinary” discovery by an eagle-eyed scholar has identified the shadowy outlines of passages from the Bible behind an eighth-century manuscript of the Qur’an – the only recorded palimpsest in which a Christian text has been effaced to make way for the Islamic holy text.

French scholar Dr Eléonore Cellard was looking for images of a palimpsest page sold a decade earlier by Christie’s when she came across the auction house’s latest catalogue, which included fragments from a manuscript of the Qur’an which Christie’s had dated to the eighth century AD, or the second century of Islam. Scrutinising the image, she noticed that, appearing faintly behind the Arabic script, were Coptic letters. She contacted Christie’s, and they managed to identify the Coptic text as coming from the Old Testament’s Book of Deuteronomy – part of the Torah and the Christian Old Testament.

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Times forced to admit: we printed garbage

Indigo Jo Blogs - 25 April, 2018 - 08:00

A front page from the Times newspaper, with the headline "Ban on junk food deals as obesity drive unites MPs" and a smaller story headlined "Judge slams advisers to parents of Alfie Evans". A one-paragraph story about the IPSO judgement on the Muslim foster care story is at the bottom right of the page.Last year, the Times carried a story that a young girl of Christian background had not been allowed to eat pork under her Muslim foster carers’ roof, on their front page. They also claimed that the mother of the family wore a ‘burka’ and did not let her wear a cross on a chain, and that the girl cried when she had to return to the foster home and begged not to have to go there. Yesterday, the Independent Press Standards Organisation (Ipso) upheld a complaint by Tower Hamlets borough council against the Times on the grounds that it broke clause 1 (accuracy) of its code, and a reference is made on the front page (see the red rectangle in the attached image). (See earlier entries: [1], [2], [3].)

Ipso have not mentioned the ruling either on its website or its Twitter feed; the ruling is published in full in the Times today. According to the Press Gazette, the story provoked 178 complaints to Ipso. Within a couple of days of the story being printed, a family court judgement was published which revealed that a number of the ‘facts’ in the Times’ original story were false, including that the girl was a Christian (her family were in fact non-practising Muslims), that the foster family did not speak English (they did), that the girl’s mother objected to the placement (she did not); there were so many inaccuracies and distortions. It is a good thing that Ipso, an industry-owned regulator that is as notorious as the PCC before it for being soft on newspapers that print inflammatory stories, has found this story beyond the pale.

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Complaint upheld over Times story about girl fostered by Muslims

The Guardian World news: Islam - 24 April, 2018 - 23:25

Council wins ruling from press watchdog over claims in story also picked up by Daily Mail

A press watchdog has upheld a complaint against the Times over its coverage of the fostering placement of a young girl in east London.

Notice of a ruling by the Independent Press Standards Organisation (Ipso) was published on the front page of Wednesday’s print edition.

Related: Daily Express editor calls its front pages 'downright offensive'

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Daily Express editor calls its front pages 'downright offensive'

The Guardian World news: Islam - 24 April, 2018 - 19:09

Recently appointed Gary Jones tells MPs some stories helped stir Islamophobic feeling in media

The Daily Express editor has said some of his newspaper’s past front pages have been “downright offensive”, made him feel “very uncomfortable” and contributed to an “Islamophobic sentiment” in the media.

Gary Jones, who took over at the newspaper last month, said he was unhappy with some of its previous coverage and would be looking to change the tone of the Express.

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