Yet more research shows chronic fatigue syndrome is real. When will health services catch up? | Naomi Chainey

When the New York Times publishes a piece on the glaring flaws in a large study conducted on the effectiveness of recommended treatments for chronically ill people, saying claims of recovery are “overstated” and “not justified by the data”, I can’t imagine that’s a good thing. However, as someone who has been ill with chronic fatigue syndrome (also called myalgic encephalomyelitis or ME/CFS) for over a decade, the article represents hope.

The authors, Julie Rehmeyer and public heath expert David Tuller, refer to the Pace trial, a publicly funded study conducted in the UK comparing the effectiveness and safety of four treatments for ME/CFS. The authors of the study were recommending two of the treatments, cognitive behavioural therapy and a program of gradually increased exercise, long before the trial commenced, on the assumption that patients with the debilitating condition were plagued with “unhelpful beliefs” about the organic nature of their illness. If we can overcome those beliefs, the theory goes, we should be able to reverse our physical deconditioning and exercise our way back to health.

In the published results, the authors claimed a modest recovery rate of 22% with the favoured therapies (other therapies were found to be comparatively ineffective). However, when patient groups gained access to the data from the trial through freedom of information requests, it was eventually revealed that the definition of “recovered” had been altered partway through the trial to include people who were still relatively ill (some with physical function on par with class II congestive heart failure patients), and had this not been done, none of the recovery rates would have been statistically significant.

As it turns out, exercise and positive thinking are not a panacea. In fact, when surveyed, 74% of people with ME/CFS who have attempted the recommended exercise program report that their condition worsens, some losing significant function in the fallout.

There is now a wealth of research on the biology of ME/CFS, discrediting the idea that we are merely “deconditioned”, but the theory that our beliefs hold us back remains persistent, both within the health care system and the media.

For example, Queensland’s Griffith University recently released a groundbreaking study confirming that people with ME/CFS have faulty calcium receptors in their immune cells, and various media outlets claimed this meant that the debate over whether or not the illness was “all in our heads” was finally over.

Never mind that the same claim was made back when studies on our metabolisms, our gut bacteria, excess molecules regulating inflammation, reduced white matter, unusual gene expression and lowered oxygen uptake were published, now our illness was real.

One wonders how many times an illness must be shown to exist before up to 250,000 chronically ill Australians (one in four of whom are too ill to leave their homes) will no longer be accused of maintaining a collective delusion.

While the research is very promising, realistically we are years, possibly decades, from the development of effective treatments for people with ME/CFS, and, in the interim, little has been done to alleviate the scepticism of the health professionals tasked with our welfare. The Pace trial remains the official touchstone for treatment recommendations and no specialist field has officially adopted the condition. Finding a doctor who is willing to take the illness seriously, and make appropriate recommendations to disability service providers, remains extremely difficult, and continues to cause great distress and financial hardship for Australians with the condition and their carers.

Penelope McMillan, president of ME/CFS Australia, believes more accredited training for GPs is in order. McMillan, who has been ill herself for 19 years, says training has already been developed by Bridges and Pathways, an organisation dedicated to building collaborations between researchers and medical professionals for the benefit of people with ME/CFS. “PHNs [primary health networks] are funded to manage and support primary healthcare services in their region,” she says. “Our task now is to get those organisations to agree to offer the training.”

But support organisations such as Penelope’s are currently bidding farewell to their own funding as government grants are redirected toward the NDIS, which is expected to take up the resulting slack in service provision. For people with ME/CFS, who are already being found ineligible for the scheme, this is hardly reassuring.

“We have members who are bed-bound and they can’t access the NDIS,” says McMillan. “It’s just heartbreaking … We have people in distressing circumstances and there’s just no help. The legislation was quite clear that the NDIS should be based on need, but the NDIA [National Disability Insurance Agency] has created a procedure that discriminates.”

McMillan refers to a list of conditions produced by the NDIA, intended as a guide for assessors. If your condition is not on the list (as ME/CFS is not) you have almost no chance of being approved for the scheme, regardless of need. In effect, the NDIA has granted privileges to those lucky enough to be represented by well-funded lobby groups at the time the list was created.

Kristel Wood struggles to work eight hours a week (though she tells me four hours is more realistically sustainable) and requires support from her family and a home care service for basic housekeeping and meal preparation. She has been rejected for the NDIS three times. “I could focus more on work,” she says, when I ask her how the NDIS would change her life. “I could get regular specialist home visits from a physio. I wouldn’t have the constant stress of playing catch-up with basic medical expenses. I’d be able to try treatment options that are currently inaccessible to me. Right now I’m barely coping.”

Wood’s third application was rejected on the basis that ME/CFS is not a “permanent illness” and “exercise and cognitive behavioural therapy are effective treatments”, a clear reference to the Pace claims, and incongruent with the established recovery rate of 5% in adults.

“Despite the study being well and truly debunked, traces of it will stay in the health system for a very long time. To weed it out is going to be quite a challenge,” says McMillan.

Perhaps that challenge should start with the Royal Australian College of General Practitioners(RACGP) who still advise GPs to recommend exercise therapy, leaving already exhausted patients to deal with their doctors’ insistence that recovery is not only possible but likely. It’s a rare GP who will trust a patient’s knowledge over the recommendations of the RACGP, and there’s an unfortunate power dynamic between doctor and patient that tends to make attempts at education uncomfortable.

So while the new research is very exciting and validates our experiences, what we very desperately need right now is services, and updates to the resources health professionals use to decide our fates, because we don’t have the energy to be battling healthcare providers for our dignity.

Yet more research shows chronic fatigue syndrome is real. When will health services catch up? | Naomi Chainey

Why Won’t My Doctor Listen to Me? The Sad Reality for Those With Post-Concussion Syndrome

A Sad Reality for So Many With Concussion and Post-Concussion Syndrome

Nearly every day in clinical practice patients report to us (one way or another), “My doctor doesn’t listen to me!” This concern is far more prevalent in those suffering the effects of concussion and post-concussion syndrome. The same sentiment is often offered when it comes to how their family and friends act.

There are several theories as to why many doctors don’t take the time to listen. You can explore these at length with a simple internet search. Here, I will explore briefly some of the better know reasons and, more importantly, what I have come to see is the real truth behind why so many are being ignored. And, in many cases, being dismissed and belittled by their trusted health care providers.

What the Studies Show

• Time. Most primary care physicians are pressured by the demands of heavy patient loads and declining insurance reimbursement. That leaves you as the patient at the mercy of a provider that may only give you one minute or less to voice your concerns. For those of you with concussion there are often far too many to list!


• Distraction. Electronic records, insurance forms, mobile devices, and excessive patient volume can cause doctors to get caught up in things that are not right in front of them. That is you, the patient. If a doctor is distracted, they will not do a great job at listening.


• Bias. Many doctors spend less time with individuals based on their race, gender, and other factors such as socioeconomic status. Also, patients that come in with recurring complaints are more likely to be dismissed or ignored.

I believe these are accurate (although unacceptable) reasons for many being short-changed when it comes to their provider’s attention. But, there are more accurate reasons doctors don’t do a great job of listening when it comes to the laundry list of struggles that can accompany concussion and post-concussion syndrome.

The Rest of the Story

• Ignorance. This may seem like a harsh term to many (particularly the doctors). What it simply means is that most primary care providers lack the knowledge and information necessary to properly question, screen, and refer for these types of injuries.


• Invisible. Concussions are not seen on CT scans or found in blood work. These are silent injuries that result in functional problems with balance, vision, cognitive abilities, emotions, and more. Conventional medical approaches are not well suited for these conditions. Therefore, doctors are less inclined to listen to problems they cannot treat.


• Overwhelming. The number of symptoms and conditions that can result from a hit to the head are staggering (we’ve compiled a list of over 50!). Your doctor, when presented with 5, 10, or more complaints, may focus only on 1 or 2 as this is what they are accustomed to.


• Unknown. Even with all the attention given to concussion over the past several years in sports, the media, and movies; this is still uncharted territory for most providers in mainstream medicine. The challenge is, this is most common route taken when one has a concussion.

So, How Do I Get Someone to Listen (and, how do I get help!)

The internet is full of strategies to get your provider to listen better to you. This, however, is not the focus of this article. And, it will not serve you well to try and get those that do not understand concussion to listen to you! You need to seek out the services of a qualified functional neurologist (most often a chiropractic neurologist) who is well versed in the art of listening, and, who understands the multitude of symptoms those with concussion and post-concussion syndrome experience. Only then will you be able to find answers as to what the best method of treatment will be for you. Concussions are real, and so are the symptoms and the solutions!

Why Won’t My Doctor Listen to Me? The Sad Reality for Those With Post-Concussion Syndrome

Hair-raising tales: beauty parlour syndrome and the dangers of visiting the salon

We all know the pain of a dodgy cut and blow-dry, or the hairdresser who never shuts up (or who never says a word, if that’s your thing). Less known is beauty parlour syndrome – or vertebrobasilar insufficiency – the term for a stroke thought to be caused by getting your hair washed at a salon. Experts believe that the process of tilting the neck backwards over a basin can, on extremely rare occasions, tear the artery, leading to blood clots and strokes.

This is what happened to Dave Tyler, who collapsed in 2011 two days after getting his hair cut at a Brighton salon and has just won £90,000 in compensation. At London’s National Hospital for Neurology and Neurosurgery, he was reportedly asked by a consultant if he had had his hair cut recently. Beauty parlour syndrome was coined in the Journal of the American Medical Association in 1993 by Dr Michael Weintraub after he saw five women who had developed serious neurological symptoms following shampoos at hair salons. Complaints included severe dizziness, loss of balance and facial numbness. Four out of five suffered strokes.

“I have never heard of it,” admits my Edinburgh hairdresser, Lesley Moses, who has been in the business for 25 years and has been washing and cutting my hair for nearly 10 of those. “I suppose it has to do with your basin: cheaper ones don’t give the right support. Mostly it’s about the consultation with the client. That’s the point where I assess what needs to happen at the basin and beyond.” Has he ever known anyone to get ill or injured after coming to see him? “No,” he says. “I have had the odd client who has made me aware of neck problems, but then we change the washing position.”

Hairdressing remains an unregulated industry and the UK is one of the only countries in the world that does not have a system of compulsory registration. Hairdressers do not need a formal qualification to shampoo hair. Put that together with sharp instruments, high heat and powerful chemicals and the salon starts to look less like an oasis of calm and more like a barbershop of horrors. Examples given by firms specialising in salon injury claims include chemical, electrical and heat burns, allergic reactions and anaphylactic shock, and poor application of chemicals. One spiel begins: “Did you know the peroxide used to bleach your hair in a high-street salon is the same chemical that was used to propel early rockets?”

On extremely rare occasions, effects can be fatal. In 2012, Julie McCabe died a year after she developed a severe allergic reaction to L’Oréal hair dye, fell into a coma and never regained consciousness. At the inquest, the coroner said he believed it was only the second death in the UK resulting from the use of hair dye. The Guardian’s beauty columnist Sali Hughes has also written about being admitted to hospital with a potentially fatal reaction after her hair was dyed at a salon.

“Clients can become allergic to products that they have not been allergic to before,” Moses explains. “All colour clients should have a regular skin or patch test every six months.”

Hair-raising tales: beauty parlour syndrome and the dangers of visiting the salon

Sudden infant death syndrome may have a biological cause, say researchers

The first evidence of a biological explanation for newborns dying suddenly in their sleep may have been found by a group of researchers investigating the brain.

Researchers at the Royal Alexandra hospital for children at Westmead say they have discovered babies who die from sudden infant death syndrome (Sids) have greatly decreased levels of a certain brain protein-like neuropeptide, known as orexin, responsible for regulating sleep arousal.

It is hoped the research could eventually lead to babies being screened for low levels of orexin.

Such a test would not be available for at least another decade, however, and parents still need to follow the Sids prevention guidelines, experts caution.

There are many well known and evidence-based environmental risk factors related to Sids, such as smoking, excessive bedding and stomach sleeping.

Dr Rita Machaalani, the sleep unit manager at Westmead, said there was now evidence that Sids was caused by a biological condition in an area of the brain responsible for sleep regulation.

A cohort study of more than 27 Sids cases and 19 controls found the level of orexin was 20% lower in the brains of those babies who had died from Sids.

“That seems to indicate that these babies may have had some defect in the message that says this baby should arouse during their sleep time but it didn’t get through to do so,” Machaalani said.

Machaalani said her team was now conducting research to find the mechanism responsible for this reduction in orexin, which has previously been implicated in sleep disorders in adults.

Medical researcher and associate professor Alexandra Martiniuk from the George institute for global health at the University of Sydney, said the potential to screen was huge.

But orexin could be just “one of many” causes of Sids, Martiniuk added.

“I have read a lot of coroner reports of children who have died of SIDS and there are these other risk factors,” she said. “They do often state that they found the child lying face down or face embedded between mattress and something else.”

Martiniuk said Sids could be the result of a combination of biological and environmental factors, such low levels of orexin and bad sleeping habits.

“It will remain to be seen whether you need a loading of risk factors to have a bad outcome of death.

“But certainly it’s a huge breakthrough because in my knowledge of Sids there hasn’t been anything biological like that before, it has always been environmental risk,” she said.

Sudden infant death syndrome may have a biological cause, say researchers

New prenatal test for Down"s syndrome "will not lead to more terminations"

A safer prenatal test for Down’s syndrome due to be introduced on the NHS is not predicted to lead to more pregnancies being terminated, according to one of Britain’s most eminent statisticians.

Sir David Spiegelhalter, professor for the public understanding of risk at the University of Cambridge, said that the best evidence available suggests that the blood test, which will be made available in 2018, would lead to an increase of around 20 in the number of positive diagnoses made each year through screening.

He added the test would result in far fewer women opting for invasive testing, reducing miscarriage numbers.

Spiegelhalter cautioned that this evidence sometimes appeared to have fallen out of view in debates in which some campaigners have warned that a generation with Down’s syndrome could be “screened out”.

“People feel very strongly about it, of course they do. It’s all the more reason to stand back and look at the figures,” he said. “There’s a mismatch at the moment between the official basis on which this is being rolled out and the discussion around it.”

According to the Department of Health’s own projections, Spiegelhalter said, more than 40 miscarriages would be avoided every year because far fewer women would be given amniocentesis, an invasive test in which a tiny amount of fluid is removed from the womb. He added, however, that it was impossible to predict exactly how families would respond to the new screening regime.

“There’s been a lot of concerns expressed about the increased number of terminations,” said Spiegelhalter. “In the assumptions under the current model that’s not the case. The estimate is that there wouldn’t be a change.”

The new test, which works by detecting tiny quantities of foetal DNA circulating in the mother’s blood, will be offered to about 10,000 women a year who are considered to have a higher chance of giving birth to a baby with Down’s syndrome, or two rarer genetic conditions: Edwards’ and Patau’s syndromes.

The test is offered after the standard screening that all pregnant women receive at 12 weeks, which involves an ultrasound and a blood test.

According to recent Department of Health figures, 7,900 women agreed to an invasive test and 46 miscarried. More than 3,000 chose not to have the test for fear of losing their baby or because they would wish to continue with their pregnancy regardless of the result. The figures showed 1,031 Down’s cases detected in a year.

The blood test, which predicts Down’s syndrome with more than 90% accuracy, means most high-risk women will be able to avoid amniocentesis. The government predicts that around 10,000 women would opt to have the non-invasive prenatal test (NIPT). Of these, the Department of Health predicts that most would be screened out and fewer than 1,500 would proceed to the invasive test, where 1,055 Down’s cases would be positively identified.

The motivation for introducing the new blood test is safety, but controversy has been building based on concerns that far more parents would be inclined to find out if their baby was affected by a genetic disorder, potentially leading to more pregnancies being terminated.

In a BBC documentary last month, A World Without Down’s Syndrome?, actor Sally Phillips, whose son Olly has Down’s syndrome, raised concerns about the new test and highlighted the joy that her son had brought to her family.

Spiegelhalter said he “in no way seeks to criticise the campaign groups”, but wants to give people access to the best evidence available. His analysis is due to be published on the website of the Winton Centre for Risk and Evidence Communication at the University of Cambridge, which launched last week and will aim to provide unbiased statistics on public health and policy issues.

Philip Dunne, the health minister, said: “We want women to be able to access the safest screening tests available, so based on the clinical evidence, we have approved the use of a new non-invasive prenatal test for Down’s, Edwards’ and Patau’s syndromes. By offering non-invasive prenatal testing, fewer pregnant women will go on to be offered diagnostic testing which carries a risk of miscarriage.”

Lynn Murray, spokesperson for the campaign group Don’t Screen Us Out, said that the concerns of those opposed to the policy went beyond the projected screening statistics. “We are very disappointed that the Department of Health have approved the NIPT roll-out without consultation with the very group that this is going to have the biggest impact on, people with Down’s syndrome and their families,” she said. “The government has admitted itself that it has made no assessment of the impact this will have on the community of people with Down’s syndrome.”

New prenatal test for Down"s syndrome "will not lead to more terminations"

Doctor wins appeal over shaken baby syndrome trials evidence

A doctor barred from practising over evidence she gave in criminal trials involving so-called shaken baby syndrome has had her licence reinstated.

Dr Waney Squier, a consultant paediatric neuropathologist, won a high court appeal battle when a judge cleared her of dishonesty on Thursday.

Squier, who worked at John Radcliffe hospital in Oxford, had her name removed from the medical register at a medical practitioners tribunal service in March.

The tribunal concluded she gave deliberately misleading and dishonest evidence for the defence in trials between 2007-10 regarding four babies and a 19-month-old who died after sustaining deliberate head injuries.

On Thursday, Mr Justice Mitting overturned the decision, saying it was flawed because her views were not misleading. However, he said she had failed to work “within the limits of her competence, to be objective and unbiased and pay due regard to the views of other experts”.

A spokeswoman for the General Medical Council, which brought the case against Squier, said: “Mr Justice Mitting has confirmed that this case was not about scientific debate and the rights and wrongs of the scientific evidence, but the manner in which Dr Squier gave evidence.

“The ruling makes clear that she acted irresponsibly in her role as an expert witness on several occasions, acted beyond her expertise and lacked objectivity, and sought to cherry-pick research which it was clear did not support her opinions.”

Doctor wins appeal over shaken baby syndrome trials evidence

Down’s syndrome and the threat of eugenics | Letters

Neither in Sally Phillips’ film, A World Without Down’s Syndrome, nor in your review by Julia Raeside (Last night’s TV: A documentary straight from the heart – and that’s the problem, 6 October) was there any reference to “eugenics”. Yet possibly still within living memory proponents of eugenics in America (and elsewhere) were advocating selective breeding to determine the future of society. It is worth noting that such ideas were grounded in the work of Francis Galton, who was a powerful influence on Cyril Burt, who in turn later developed the 11-plus exams. (His influence might be resurrected in the tests used to determine who is most fit for the new grammar schools we’re promised.)

Sally Phillips’ programme does, therefore, offer a timely reminder of the dangers of embarking on a determinist view of society and the risk that selective breeding is acceptable. As Phillips reported, there is a lot of pressure to avoid a potential “burden” as an outcome of the wrong sort of foetus. In America the eugenicists gathered data purporting to show which sectors of society were more (or less) fit for the future. Favoured solutions proposed to avoid a future populated by those deemed to be “unfit” for society included restrictions on immigration and enforced sterilisation. There is much in the history of that movement to warn us of the dangers of a determinist future. It is, therefore, right to have the questions raised: what kind of society do we want; and how kind do we want society to be?
Dr Simon Gibbs
Reader in educational psychology, University of Newcastle

• Hadley Freeman, in her opinion piece on A World Without Down’s Syndrome, writes that it is genuinely shocking that BBC 2 decided to screen such a blatantly anti-choice message (Sorry, Sally Phillips, but a woman should be able to know if her unborn baby has Down’s syndrome, theguardian.com, 6 October). Is she advocating censorship? In showing the joy her son with Down’s syndrome brings to her family, Sally Phillips is trying to counter negative headlines and arguments. She is not anti-choice. She wants people to have better information. We mothers who have or have had sons or daughters with Down’s syndrome should not be impeded from saying they enrich our families and lead valuable lives. It is important to have a debate about the kind of society we want to live in.
Hazel Morgan
Dorchester

Down’s syndrome and the threat of eugenics | Letters

The week in TV: Westworld; A World Without Down’s Syndrome; The Apprentice; Real Time With Bill Maher

Westworld (Sky Atlantic/Now TV)
A World Without Down’s Syndrome? (BBC2) | iPlayer
The Apprentice (BBC1) | iPlayer
Real Time With Bill Maher (Sky Atlantic/Now TV)

The much-vaunted Westworld, HBO’s grandiloquent bid to sew our carcasses ever more tightly into a cocoon of weekly fantasy – Game of Thrones officially runs out of breasts and dying heroes some time in 2018 – arrived with low-key splendour. Muted title sound, yet an opening sequence of such technical magnificence it looked as if it had been beamed back to us from about 2048. The fetlocks of horses were being 3D-modelled with filigree’d and granular precision, as were the noses of crooked barmen (as if there’s any other kind) and doughty sheriffs, and the very ivories of nags’ teeth and of pianolas, and suddenly we were into Westworld, a panorama of haughty big skies, aching beauty and spitefully small human dreams.

A world, in case you missed all the media hype (and where on earth were you? Possessing a life?), in which guests will pay handsomely for a week or so in a wild west in which they can go riotously tootsie: sleep with every perfumed whore, gut-shoot every sweaty dog-breath hoodlum. Even, if addled and bourbonned enough, shag the bandit and gun the girl. They’re all robots, programmed to hurt and bleed like us, but also to wake the next day mended and with no memories.

It’s an intriguing premise, of course, and, of course it will all go wrong: a sudden aberrant line of source code will risk not only the lives of the guests but, more crucially, the psyches of the androids in the park, who suddenly have twitches of memories. For the moment, we care more about the robots, who seem more human than the visitors, who cannot be physically harmed in the park: a depressing number have chosen to go all black hat with their moneyed freedom, murdering and fornicating at any whim: be advised that this is often nasty viewing.

[embedded content]

Watch a trailer for Westworld.

It could have been just another tricksy CGI fantasy. But it came from the pen of Michael Crichton, responsible for Jurassic Park, which also asked pertinent questions about humanity and technology. I would happily class Crichton with Ray Bradbury and Philip K Dick, because they also wrote wisely about ourselves: even when it might have been spuriously about robots, or dinosaurs, it was always about us. What might we do? Are we happy with discovering the people we truly are or only happy with the people we want to be? And if you can’t tell the difference between the humans and the androids, should it matter?

This is existentially and morally mired, in that it raises questions not of the narrative in itself but of us, the reader/viewer. This opener was tremendously, deliberately confusing: the good guy is a robot, the bad guy (a tremendous Ed Harris, playing the part he was born to play) a veteran vicious tourist on the hunt for darker levels, to assuage all he lacks in real life, which is shaping up as a howdy-doody lot of a lack. It’s all rather scintillating, not least because if features Borgen’s Sidse Babett Knudsen as the searingly blue-eyed head of quality assurance, off stage and chain-smoking high on the controllers’ gantry, intent not on money but simple control: of robots, the “livestock”, but also of every human around her.

Could it be a worthy successor to GoT? Absolutely. HBO has another global heavyweight on its hands, thanks to the authors: I’m hooked, in a way I never was with early Thrones. Again: this is not about robots: it’s about us. Yet every time I am tempted to worry about robots taking over the world any time before about 2416 I simply think of self-service tills. Smile my usual smile.

Most winning programme of the week was undoubtedly A World Without Down’s Syndrome?, in which Sally Phillips, with quizzical wit and just the right salting of lip-trembling anger, asked whether we’re right to hail with such a blizzard of approbation a new non-invasive test for pregnant mothers.

Halldóra, one of the few people in Iceland with Down’s, and actor Sally Phillips. Photograph: Not Known/BBC/Dragonfly

Some of the statistics were frightening. In Iceland, where they have had the test for a while, every positive diagnosis for Down’s has resulted in termination: 100% in the past five years. There are now fewer than 40,000 people with Down’s in Britain. Phillips, whose dear son Olly is one, made a passionate yet refreshingly unsentimental case for the right to have Down’s extant in this world. It’s not a disease, it’s a set of characteristics (and ones that, actually, genetically predispose the child to happiness).

Hugely set against this comes the understandable set of fears of any mother: of an inability to cope, of a child’s being bullied, even of their own prejudices. Yet Down’s remains the one disability it has become socially acceptable to “cleanse” and Sally was more than troubled (as was I) by medical professionals’ universal embracing of one and only one tenet: Down’s is always bad, choice is always good. This lucid and strangely uplifting programme should be only the very beginning of a debate we should have been busily having for about 30 years.

“I’m the business equivalent of a diamond. I can sparkle, and light up a room, but if you’re not careful I can cut you.” Was this contestant perhaps confusing “a diamond” with “scissors”? I can’t think of anyone in the history of ever who has actually been cut by a diamond. Just by the people who wear them.

The women’s team discuss how to turn a whelk stand into a pig’s ear in The Apprentice. Photograph: BBC

Yes, The Apprentice is back, complete with ol’ Lord Bearded Man-Stoat and the usual basket of deplorables. And back this year to guys v gals, an intriguing reversion that shouldn’t in an ideal world work, but does. It might be my imagination but some of the candidates seem a little more sympathetic than in recent years. Some, and it’s all relative, of course, and they managed as usual to turn a whelk stall into a pig’s ear with their first task. The women called back into the boardroom made a masterclass only of being able to turn viciously, wheel and blame each other, and regroup in nanoseconds to re-blame another other: bitchy death by scuffed Louboutin heels. Bring it on.

For those not yet driven forlorn by attemping to make sense of America, I cannot recommend highly enough Real Time with Bill Maher. Like a Democrat version of PJ O’Rourke, Maher is suave, angry, pithily funny and possessed of a fine foul mouth when necessary.

He makes no secret of his loathings for Mr Trump, the most badass black hat of this and most other years. “Welcome to another week of ‘yes, this is really happening,’” he began a more than usually confrontational show. It’s not perfect: some humour strains in the translation and I wish these shows wouldn’t always rely on visual gags that always flash up for about six seconds longer than it has taken to get the often negligible “joke”. Yet Maher, and John Oliver, proves that there’s space to manage both satire and deadly serious within the very same hour, and I wonder anew why we don’t quite have the equivalent here: a TV version of Private Eye. Eddie Mair for the job.

The week in TV: Westworld; A World Without Down’s Syndrome; The Apprentice; Real Time With Bill Maher

My brother has Down’s syndrome. I wouldn’t change him for the world | Oliver Shone

“Sausage rolls!” I hear him exclaim, sitting in his place at the table while indulging in his favourite ice-cream. His knowledge is limited, his speech is limited, his comprehension of life is limited – but his emotions are heightened. This is my 13-year-old brother, Sebbie; he has Down’s syndrome, a congenital disorder arising from a chromosome defect.

He may not seem as clever as the average child; however, his intelligence, though less apparent, is no less valuable. He is not able to conform to society’s expectations by taking exams and tests to demonstrate his intellect. But Albert Einstein said: “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” He is clever, but cannot be part of “our” life because he is not clever in the “normal” way.

He is sitting opposite me at the table eating his pudding, while dancing to a “happy song”; he just has to physically express enjoyment (he loves his vanilla soft scoop). Internal rhythm is often talked about by musicians and is something to which I cannot relate; Sebbie’s rhythm, however, represents his effusive personality. Dancing is one of his greatest passions.

Looking at him from across the table, I think how far he has come, physically and mentally. He has recently learned to swim and is making progress towards adding numbers.

‘He can be tricky, perplexing and sometimes outrageous, but his sense of fun and love outweighs all else.’ Photograph: Oliver and Sebbie Shone

I will never forget the day Sebbie was born; it was my fourth birthday and he arrived so quickly I didn’t even have time to finish my cake before going to see him in the hospital. He was in the special care baby unit, surrounded by wires and lying in a tiny pod. Lots of doctors surrounded him and, young as I was, I realised that he was not a healthy child, but to me he was just my new little brother and was perfect. I did not understand, then, the overwhelming distress and horror that faced my family.

There were many big words flying around that I did not understand. Tetralogy of Fallot … atrial septal defect … open-heart surgery … My parents were alarmed, panicked; I had not seen them like this and I felt afraid too. This was the start of a long and terrifying journey of operations, hopes and fears. But nothing seems to dampen his enthusiasm and his quirky outlook on life.

It is hard to judge “normal” in this world. There is talk of testing for Down’s syndrome, selective abortion and eradicating this condition. While I understand that no disability is ideal, I think it would be desperately sad to lose these precious children and adults who bring so much light into their families’ lives. Gone would be my crazy brother who talks of pizzas, trains and skiing all in the same sentence; gone would be the adoration that he feels for me and gone would be that wonderful dancing and tuneless singing.

We often find ourselves laughing round the table at funny remarks and comments of his; he has always had the ability to generate laughter. His sense of humour is infectious; there have been many times that he has diffused a tense situation with his comical asides. It is hard to take life too seriously when Sebbie lifts up his jumper and tells me to “Put your belly away!” His sense of timing is impeccable.

His lack of inhibition means he is more likely than not to join another family at the park or beach while giving us a cheeky wave. He has no sense of embarrassment, shyness or social conventions; this can lead to some embarrassment from me, although most people’s reactions are positive.

I often think of his future and what it holds. Sebbie will never be able to live alone and will need constant care and supervision, which I plan to always be a part of. Although we love him, it is frightening to look ahead to a life that will never be independent. We not only worry about how he will cope in later life, but also the major operation that will probably face him before he is 18.

Sebbie’s current condition (although he is physically more than able) can lead to frustration and difficulty. Even the simplest tasks, such as putting on a coat, socks and shoes, can lead to disputes, especially as he is such a strong character. Growing up with a brother with Down’s syndrome has been a real challenge but I would not change him for the world. He can be tricky, perplexing and sometimes outrageous, but his sense of fun and love outweighs all else. There are adults with the condition who have learned to drive cars, are performing in drama groups and are holding down jobs.

My great uncle had the same condition and he was born exactly 100 years before Sebbie, in 1903. Thankfully times have changed since he was alive – he spent his life in an institution. Now disabled children have huge opportunities open to them and are achieving more than was ever thought possible. With our help I hope that Sebbie will grasp these opportunities. Who knows what he might achieve? I will always be at his side to help him along and I know the rewards I get back from him, in the form of love and friendship will make it worthwhile.

• Oliver originally wrote this piece as part of his GCSE English course last year

My brother has Down’s syndrome. I wouldn’t change him for the world | Oliver Shone

Sorry, Sally Phillips, but a woman should be able to know if her unborn baby has Down’s syndrome | Hadley Freeman

I’ve always been a fan of Sally Phillips. I loved her as the chain-smoking feminist Shazza in Bridget Jones, of course, as well as the nightmare girlfriend from the past in Green Wing. But mainly I loved her for the 90s feminist sketch show Smack the Pony. Some women experience their feminist awakening when they read The Female Eunuch or Andrea Dworkin. For me, it came from Nora Ephron and Smack the Pony, in which Phillips, along with Fiona Allen and Doon Mackichan, gloriously satirised the rigid expectations placed on women, often by other women.

Which brings me to Phillips’ documentary, A World Without Down’s Syndrome?, which screened on Wednesday night on BBC2. There has been an enormous amount of publicity for this documentary, with praise for Phillips’ clearly heartfelt intentions. The actor has an adorable young son, Olly, who has Down’s syndrome, and one of her aims is to provide a counterbalance to the almost entirely negative depiction of Down’s syndrome in both society and the media. For this, she should be loudly applauded. True, her wholly positive depiction of her life with a child with Down’s syndrome is as partial as the wholly negative ones, not least because her son is relatively high-functioning and Phillips and her husband are able to afford help. Still, as I said, it’s a much-needed corrective, and hats off to her.

But that is not all Phillips and her film are arguing for. Rather, the documentary was pegged to the imminent availability of non-invasive prenatal testing on the NHS, which is a safe and more accurate method of screening for Down’s syndrome than the form currently available, and with no risk of miscarriage. This, according to Phillips, is “sad, it’s just horrible, really”. Later, she describes herself as “really quite angry” about it.

To argue for screening is not to argue, as Phillips suggests, that people with Down’s don’t have a right to life

Phillips makes no bones that she is coming at this subject from a deeply personal perspective, one that is occasionally blurred with tears during her film. This perhaps explains why such a bright woman repeatedly and determinedly conflated equipping pregnant women with knowledge about their unborn baby – that is, being screened – and the advice they are then given about it. No doubt some medical professionals have advised women to have terminations after receiving a positive test; there absolutely should be campaigning about how this kind of information is imparted to expectant women and mothers who have just given birth.

This, however, does not mean that women should be denied available information about their unborn baby’s health, and instead be unnecessarily surprised at birth with a situation for which they may be entirely unprepared. Phillips is right: rates of Down’s syndrome probably will decrease with the rise of easier, more accurate screening. But she is wrong to then draw the conclusion that women should therefore not be informed about the health of their in utero baby.

Phillips did not know Olly had Down’s syndrome until he was born. But this, she says, was a good thing, because by having no choice she was compelled to see how much Olly benefits her family. “That made me wonder whether choice is always the wonderful thing it’s cracked up to be,” she says, a statement which casts something of a shadow on her description of herself as “pro-choice”. But while not having a choice has worked out wonderfully for her family, no consideration is given to women who do not have Phillips’ aforementioned privileges. A single mother with two jobs and three kids, for example, might not find similar benefits from a lack of choice. It is very difficult to see how compelling women who genuinely feel they cannot care for a child with special needs to give birth helps anyone, least of all people with Down’s syndrome.

To argue for screening – and for women to have the freedom to make their own choice with the information – is not to argue, as Phillips suggests, that people with Down’s syndrome don’t have a right to life, or should never have been born. The point is it’s the woman’s choice about what’s best for her and her family, whatever the situation. Early in the film Phillips meets Prof Sue Buckley, who works at Down’s Syndrome Education. “We don’t believe that a diagnosis of Down’s syndrome should be a reason for termination,” Buckley says to a solemn Phillips.

And therein lies the rub: the idea that women should only have terminations for reasons someone else finds acceptable. How about if a woman feels too young to have a baby, or too poor, or doesn’t want to be tied to the man she conceived with for the rest of her life, or she doesn’t want a third baby, or any baby at all – are these permissible reasons for a termination? They are all pretty common ones. Or is it just a Down’s syndrome diagnosis that is deemed an unacceptable cause for an abortion? In more controversial areas, such as sex-selection abortion, the correct approach is to tackle the attitudes behind it, not ban abortion per se. Similarly, with Down’s syndrome screening what needs examining is the image around the syndrome and the way doctors discuss it, not the screening itself. It’s the attitudes, not the science, that’s the problem. Science is what gives women the choice. Which brings me to the nub of Phillips’ documentary.

Phillips, a committed Christian (which was not mentioned in the documentary), and her many online supporters insist that they’re not anti-choice – they just want women to make “informed” choices. The lie of this was revealed when Phillips met Kate, a woman who terminated her pregnancy after she was told her baby would have Down’s syndrome. Kate talked about how she read blogs, positive (“loads”) and negative, by parents of children with Down’s syndrome. She felt “informed”, and she then opted for a termination. Phillips says afterwards to the camera that she felt Kate was wrong: “Kate didn’t want a child like mine. That was difficult to hear.”

So it’s not choices that are “uninformed” that are the problem, it’s choices Phillips and others of her mindset don’t agree with. It is human for Phillips to relate these stories so closely to herself, but it is also astonishingly solipsistic and, given that she is doing so on such a public platform, potentially destructive. I am not generally given to making hand-wringing proclamations about what the BBC should and should not show, but it is genuinely shocking that BBC2 decided to screen a documentary with such a blatantly anti-choice message.

Phillips opened her documentary with the following questions: “What kind of society do we want to live in and who should be allowed to live in it?” The answer to the latter is, of course, everyone, which is the status quo – and more screening would not change that.

Phillips’ inference that screening will lead to babies with Down’s syndrome not “being allowed” to live in this society is dishonest. Anything that gives women more objective scientific information about their pregnancy is good.

The question of what kind of society we want to live in is, to my mind, even more simple: one in which women are not dismissed as “uninformed” or “wrong” on national TV – or anywhere – for making a choice about their pregnancy, and that goes equally for women who decide to carry their Down’s syndrome baby to term, or women who opt for a termination. Feeling is not fact, and being pro-choice means supporting all women’s choices, not just the ones you agree with. I’m pretty sure Smack the Pony once taught me that.

Sorry, Sally Phillips, but a woman should be able to know if her unborn baby has Down’s syndrome | Hadley Freeman

A World Without Down’s Syndrome? review – straight from the heart, and that’s the problem

‘This is Olly, my son,” says actor and writer Sally Phillips, over footage of her grinning 11-year-old cracking jokes to his siblings at the dinner table. Aside from being an amateur standup, paint-flinger and epic hugger, Olly has Down’s syndrome, a condition he was diagnosed with at 10 days old. Phillips wants to talk about a new test offered on the NHS that will give expectant mothers a non-invasive, 99% indication of the Down’s status of their unborn baby. Other countries using the test have had an increase in the rate of post-positive-result terminations. As it stands, nine out of 10 British women choose abortion if their baby is diagnosed in utero.

In her documentary, A World Without Down’s Syndrome? (BBC2), Phillips hopes to kick off a debate on the wisdom of introducing the test, which she fears will cause the number of terminations to go up here, too.

She goes to considerable lengths to take in all aspects of the subject, meeting parents, experts, educators and scientists in places as far apart as Iceland and California. But she is both the perfect person to give an account of Down’s syndrome and the worst possible person to present this documentary about the pros and cons of screening.

How could anyone look at Phillips’s son and say they wouldn’t want their child to be like him? This is the nub of programme, the undeniable foundation on which her argument is built. Now take that out into the world, this image of Phillips metaphorically clutching a picture of lovely, funny, warm, wonderful Olly in her hands and try to get a sensible conversation going about the pros and cons of screening. It isn’t possible for the other side of the debate to flow freely under these circumstances.

What I get instead of an even-handed discussion is at least a light shined on something that has only ever been in my peripheral vision. Phillips is right that the subject needs raising because the way a pregnant woman is spoken to about a Down’s diagnosis undeniably needs to change. “I expected tragedy and got comedy,” is how she puts it. A long list of potential health problems, as currently provided in NHS leaflets, isn’t enough to go on when you’re deciding whether or not to bring a life into the world. She has so much insight and intelligence to bring to this, but her interactions with experts and parents on the other side of this debate often leave her tearful and frustrated.

Producer/director Clare Richards does try to keep a careful hand on the tiller, often framing setups with Phillips’s own disclaimers about being a novice film-maker, and occasional questions about whether she is getting it right. Phillips herself said in an interview (on ITV’s This Morning) that she wanted someone else to make this film, someone with documentary experience. Presumably, her celebrity status made her a more appealing prospect for the broadcaster than a scientist or journalist with that degree of distance.

As she treads on ever more tricky territory, you can see why she was reluctant. The most difficult scene is her interview with Kate, an expectant mum who terminated a pregnancy after a positive Down’s diagnosis. As she describes aborting her 25-week-old foetus, Phillips tears up and bows her head. She acknowledges Kate’s bravery in talking about such a hard choice, but then she takes out an iPad and shows Kate a video clip of a young American gymnast called Chelsea, who also has the condition. Phillips’s smile seems to be urging Kate to see what she can plainly see: that their lives are no less valid. That people with Down’s can go on to great things.

“Do you mind if I ask you the really difficult question?” Phillips says, in the most direct confrontation of the programme. “So, you think her life would have been better not happening?” she asks tentatively. Kate takes a moment, then says that she thinks it should be up to each mother to decide.

“Kate didn’t want a child like mine,” says Phillips in voiceover after their interview. That wholly emotional summary of what we’ve just seen is why this doesn’t work as a documentary. When a subject is so close to the presenter’s heart that it is indivisible from it, the result is impassioned but not impartial.

As Phillips herself says, this is “a film that asks the question – what kind of society do we want to live in?” The answer here is unequivocal from minute one: a society that cares about everyone, no matter what their chromosomal makeup. Who could disagree?

A World Without Down’s Syndrome? review – straight from the heart, and that’s the problem

Whether to have a Down’s syndrome baby – it’s not black and white | Frances Ryan

There’s a scene in BBC2’s A World Without Down’s Syndrome?, which airs tonight, in which Sally Phillips, Bridget Jones’ Diary actor and mother of a son with Down’s, shows a video of a disabled girl competing at a gymnastics competition to a woman who chose to end her own pregnancy. The interaction isn’t designed to guilt the woman who made a different decision – Phillips is an empathetic presenter and describes herself as pro-choice – but it is a snapshot of how the conversation around disability and abortion is routinely set up: one woman’s choice versus another’s.

We see this in articles praising women who choose to have their child despite the fact a foetal abnormality has been detected, often asking other female readers: what would you do? Or the tone of news items in which women express doubts or fears about raising a disabled child. Katie Price was described as having “confessed”when she said she probably would have had an abortion if she’d known her son Harvey was going to be severely disabled, as if the thought, let alone the act, was a heinous crime.

On the other hand, I’ve seen women with disabled children – and disabled people themselves – be asked incredulously (often by complete strangers) why an abortion wasn’t chosen. Such attitudes are particularly alarming in a climate where disabled people are increasingly perceived as a costly burden to the state.

When it comes to disability and pregnancy, we are routinely stuck in this sort of black-and-white dichotomy: having a disabled child is said to be a tragedy or inconvenience that should always be avoided, while women who do choose to abort a foetus with abnormalities are vilified as “shallow” and “selfish”. Neither is accurate nor addresses the issues that really matter.

The truth is there is still considerable prejudice around disability. We live in a culture where disabled people’s lives are often said to be worth less, and difference is equated with failure or negativity. Even Paralympians are described in some media reports as “suffering” from their disability. It’s not alarmist to accept that the way as a society we understand disability can directly impact on how individuals feel about bringing up a disabled child.

Medical professionals – the very people pregnant women rely on – are not exempt from spreading such attitudes. Phillips has spoken of the way that, after her son was born with Down’s, her doctor broke the “bad news” and the nurse cried. (Her child’s disability wasn’t detected during pregnancy.)As the NHS looks set to introduce a more effective screening for Down’s syndrome, it’s a valid moment to question how we view disability as a society, and to accept that women, and of course men, deserve accurate information in order to make an informed decision.

But in doing so, we should be vigilant of how quickly this conversation can be derailed. It is an ongoing strategy of anti-choice groups to hijack disability, generally as a way to reduce women’s reproductive rights. This sort of faux concern tends to be less about disabled people’s equality and more about women’s inequality. (And though we’re often cut out from the discussion, disabled women can be the ones who are pregnant.) Days before Phillips’ documentary was even set to air, the Mail used it as an opportunity to run an article claiming women “are being pressured to abort babies” with Down’s.

And yet anti-choice campaigners and media organisations who purport to wish to “protect” disabled foetuses tend to be very quiet – or in the Mail’s case, very vocal – about the support disabled people should receive once they are out of the womb. Raising a child with a severe disability can be exhausting and difficult, as well as wonderful, and this is much harder when the state cuts play centres for disabled children, respite care and transport. Phillips herself admits she was lucky to be able to afford to hire a live-in nanny to help with her disabled child, an advantage women on low incomes struggling alone can only imagine.

And we need to talk about that too, if we are going to really have this discussion. We need to admit that things such as economic and gender inequality, as well as perceptions of disability, impact on our supposedly free choices. And we need to argue for positive change, such as more government support for disabled children (and adults), and more inclusion of disabled people in all parts of society.

As we all know, life, let alone disability or raising children, is not black and white but rather filled with multiple shades of grey. I hope Phillips’ documentary starts a long overdue and nuanced conversation. Both women and disabled people deserve better than simplistic judgments.

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Whether to have a Down’s syndrome baby – it’s not black and white | Frances Ryan

Sally Phillips: Do we really want a world without Down’s syndrome?

Sally Phillips and her husband, Andrew, didn’t find out that their first child, Olly, 12, had Down’s syndrome until he was 10 days old. Nobody noticed on the day he was born. “I had a caesarean because he was breech,” says Phillips. “I reacted badly to the anaesthetic so everyone was focused on me. Olly scored highly on all the tests and no one noticed there was anything different about him. I noticed. And I asked them to look at him. There was something about his eyes that was troubling me. It was as if his cheeks were really big and not allowing his eyes to open. I said, ‘Does he look like that because I ate a lot of cake when I was pregnant?’ They said, ‘Yes, probably.’”

Best-known for her roles in the Bridget Jones films (as Bridget’s best friend, Shazza) and Miranda (where she plays Miranda’s old school friend, Tilly), she has a knack of making comedy out of life, including her own. And she is not afraid of making fun of herself or her family. Indeed, showing that you can have a normal family life (because what is that anyway?) with a child with Down’s syndrome is one of the main points of a documentary Phillips has made for BBC2, A World Without Down’s Syndrome?

Her first documentary, it examines whether the new, non-invasive screening tests that are available will eventually eradicate Down’s syndrome. Phillips finds the prospect chilling.

She didn’t know that Olly would have Down’s syndrome. “Babies with Down’s syndrome quite often have poor muscle tone and find it hard to feed. We would stay up all night trying to feed him and by 10 days after his birth, he had gone down from 8lb to 3lb. Everyone was still saying, ‘You’re a first-time mum and you’re worrying. Babies always lose weight.’”

She had all the usual prenatal tests but they all came out as indicating an average risk. She admits she felt strange during the pregnancy but put it down to being a first-time mother. “I’m not one of these people who thinks they are psychic. But I just didn’t feel good during the pregnancy. I was all swollen up. It was like I’d been stung by a giant hornet. But everyone kept saying, ‘You’re a first-time mum, it’s all fine.’ Now, being politically correct, I wouldn’t say that I felt that something was ‘wrong’ but I knew that it was different.”

Phillips’ instinct was right. But she is evidently resilient and resolved to be open-minded about parenting a child with Down’s syndrome.

She has been pleasantly surprised. “There were lots of moments during Olly’s babyhood where I would think to myself, ‘Wait a minute, I am not experiencing this as a disaster.’ But you are so bought into the narrative. All the pregnancy books refer to Down’s syndrome as a ‘defect’. All you get is this information that says ‘High incidence of leukaemia, high incidence of deafness’ … It’s totally overwhelming and unhelpful.”

Her family life, as seen on the documentary, is the counter-narrative: water fights, paint fights, an obsession with Barcelona football club and a lot of dancing. Olly, it turned out, was completely different to the “tragedy” she was reading about. “Olly smiled his first smile at four weeks, like any baby, and it was this massive great big smile. I remember I had this one moment when I was going into town on the bus and there were these two mums with their ‘perfect’ babies and they were complaining and whingeing about everything. I thought, oh. I’m supposed to be having a dreadful time? I’m really not.

Sally Phillips in a scene from the documentary, A World Without Down’s Syndrome? Photograph: Brian J Ritchie

“At that point I was swinging Olly around the house in a towel, trying to teach him to crawl. That is something you would not have to teach a ‘normal’ child. But we were learning to crawl together and our bond was incredibly strong. We would laugh like lunatics for large portions of the day.”

We are talking in a large room overlooking the garden at her house in south-west London. Every two seconds we are interrupted by her two younger sons, Tom, four, and Luke, nine, showing off and being random. Their father, Andrew, a shipping industry executive, hovers nearby. She chases the boys out but they keep coming back. Eventually Olly wanders in with his iPad, looking for peace and quiet.

“Turn the sound off if you’re coming in here, Olly,” says Phillips.

“It is off,” he looks at us, witheringly, suddenly deciding against sharing space with two boring old people, “But bye bye.” It’s standard 12-year-old behaviour.

Olly attends a mainstream school and has disproved a lot of theories Phillips was told about when he was born. “I was told he would never ride a bike. He goes for a bike ride every day. I was told he would never be able to climb anything. Then we started having this problem where he would scale the back fence of the garden because he wanted to make friends with the neighbour’s children. None of the rest of us could scale that fence. The thing is, nobody knows what Down’s syndrome children can achieve.”

Do we really want to eliminate this community of people – 40,000 strong – in the UK?

It took years for her to decide that she was willing to front a documentary about Down’s syndrome. For a long time she had been hoping that someone else would make one and show the truth about how living with a child with Down’s syndrome is not depressing and life-ruining – in fact, the opposite. Eventually she realised that this wouldn’t happen and she would have to make it herself.

The tipping point? The new prenatal testing that should soon be available on the NHS – NIPT (non-invasive prenatal testing). This is a blood test that is done from week 10 of pregnancy and detects Down’s syndrome with 99% accuracy. In countries such as Iceland (which Phillips visits in the film), the introduction of the test has meant that 100% of Down’s syndrome pregnancies are terminated.

Phillips wants to pose the question: Do we really want to eliminate this community of people – 40,000 strong – in the UK?

“We have the most expensive state-of-the-art Down’s syndrome detection test and the ability to terminate right up until birth. But no allowance is made for the point of view of the other side. The families of people with Down’s syndrome are not consulted. People with Down’s syndrome are not consulted. There has never been an ethical debate about it.”

Phillips didn’t particularly want to be the one to start this debate, but that’s how it has worked out. Her status as an apologetic and reluctant activist is what makes the film appealing, funny and easy to watch. Although she has made no secret of the fact that she is a Christian and a lot of her fascination with ethics is clearly informed by her faith, she is keen to emphasise that she is pro-choice. Plus, she has a fierce curiosity about the views of those she disagrees with.

The film shows her struggling with her emotions as she interviews a woman who decided to abort a Down’s syndrome child. Phillips shows the woman a video of a Down’s syndrome woman competing at a gymnastics competition. The woman is unmoved and unimpressed. As the mother of a Down’s syndrome child, Phillips is clearly angry. But you can also see that she is empathetic, trying to understand. She’s a good person to put across two sides of the story.

There are, of course, two sides to her own story in this context: life before and after Down’s syndrome. “I didn’t know anything about Down’s syndrome at all,” she says. “I didn’t even know anyone with a disabled child. In fact, I don’t think I knew anyone who was disabled.”

Her point is that we are sleepwalking into a world where we could eliminate Down’s syndrome. Is that what we really want? There is a question she has faced all her life as a parent that has always bothered her. “I get asked, ‘Did you know?’ But what I hate is that I also get asked, ‘Didn’t you know?’” The implication being that if she had known, surely she would have terminated the pregnancy.

“And that’s what worries me.”

She would not have terminated the pregnancy. And with what she knows now, she wants to make more people aware of the fact that a Down’s syndrome child does not need to be in the “defect” category. Quite the opposite, she would argue.

She adds: “In a system where everybody screens and where you know at 10 or 12 weeks with 99% certainty whether your unborn baby has Down’s syndrome, it becomes ‘your fault’ if you choose to have the baby. We have imperceptibly flipped into a situation where the woman is under societal pressure to have that termination. Where does it lead? If you choose to have that child, should the government help you? After all, it was your choice. Why should anyone else help you?

“We are really close to that attitude already. There is already a new kind of pernicious discrimination towards disabled people, the idea that they are scroungers. ‘Why should you steal my taxes?’ Who, then, would want to have that child?”

• A World Without Down’s Syndrome? will be shown on BBC2 on 5 October

Sally Phillips: Do we really want a world without Down’s syndrome?

Gluten-free foods can relieve symptoms of irritable bowel syndrome | Letters

Arwa Mahdawi (My plea for gluten tolerance, 7 September) appears to be unaware that many people requesting gluten-free foods are suffering from food intolerances. Such sufferers do not have coeliac disease, which is an example of food hypersensitivity. Irritable bowel syndrome (IBS) is such a condition that can be much relieved by the low-Fodmap (fermentable, oligosaccharides, disaccharides, monosaccharides, and polyols) diet as described by Monash University, based on the work of Dr Sue Shepherd and Dr Peter Gibson.

The research includes the group of poorly absorbed short-chain carbohydrates, which include lactose, fructose, polyols and fructans. Fructans include many wheat-based products. Therefore relief of IBS symptoms can be eased by trying gluten-free foods.
Rosie Keegan
London

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Gluten-free foods can relieve symptoms of irritable bowel syndrome | Letters

Ehlers-Danlos Syndrome (EDS) and Kratom

Ehlers-Danlos Syndrome (EDS) is an often-unpleasant health-related issue that may produce in those with seemingly superhuman physical abilities in their youth. EDS presents itself in extremely varied techniques and hence, is challenging to describe concisely.

Think about if — while youthful, you had Gumby-like yogic talents with which to amuse your pals. Then, as you grew older, odd, physique-wide soreness grew to become a frequent occurrence, possibly moving from location to spot in your entire body. As several as half of individuals who possess this genetic defect really do not realize it and hence, are not prepared for some of the potentially existence-threatening issues that can come up. This is specifically real of people with the vascular variety of Ehlers-Danlos Syndrome.

It is difficult to know how to strategy this unusual condition. Is it a topic for comedy? Often, it is. Some EDS sufferers have developed a fine sense of humor to help them deal with the inexplicable, unpredictable habits of their body. Other times it is the cause of significant pain and the supply of private tragedy, even death. The significance of an early diagnosis can not be more than-stressed, specifically for individuals with the vascular variety of Ehlers-Danlos Syndrome.

Ehlers-Danlos Syndrome is an inherited defect in a person’s ability to create collagen. What is collagen, you inquire? Collagen constitutes 25-35% of the protein in your entire body. It holds you together. Undesirable things can take place, almost anyplace in your physique if collagen is to any degree absent and/or defective.

There are a variety of related syndromes, which we really don’t have time to go into here: Marfan Syndrome, Loeys-Dietz, Ectopia-Lentis Syndrome, and other individuals.

Self-Medicating Ehlers-Danlos Syndrome with the botanical Kratom

Numerous of individuals who suffer these disease syndromes have discovered their way to kratom, an herb that gently generates relief for soreness, anxiety, and the depression that difficulties them. Kratom, they say is far preferable to the opioid drugs that their health-related teams typically prescribe. A single big plus for people who will be medicating for an increasing lifetime of ache and often associated digestive disorders is the fact that kratom’s main analgesic alkaloids are about one-tenth as constipative as morphine, for illustration.

In hunting above the therapies for those with Ehlers-Danlos Syndrome — and notably the vascular variety, where blood strain medications are often prescribed to reduce the likelihood of aortic or other vascular ruptures — kratom might supply a tiny-identified advantage. Kratom is made up of an alkaloid called Raubasine, which has anti-hypertensive, anti-adrenergic, and vasodilator actions, which may be useful in reducing blood strain. Raubasine was utilized as the commencing level to create the anti-hypertensive medicine, Ajmalicine.

It ought to be regarded as that the amount of Raubasine will vary in kratom, dependent on the strain and in which it was grown. A discussion of this can be discovered at the bottom of this record of kratom alkaloids. To sum it up, it appears that Raubasine/Ajmalicine takes place in most genotypes of Mitragyna speciosa. As a result, it is sensible to figure this into any calculations of how significantly blood strain medication and/or kratom these afflicted with the vascular complication of Ehlers-Danlos Syndrome could need to have.

We may surmise that numerous of individuals with this hereditary condition, triggered by a defect in their production of collagen, have located employment in the circus in many years past as “contortionists”.

As suspected, we located this to be real. As a single Ehlers-Danlos-Syndrome sufferer in her mid-forties pointed out, the discomfort of EDS does not develop right up until later in life. Therefore, most contortionists — blessed or cursed with the hypermobility sort of EDS — are not significantly older than 30.

How widespread? EDS Foundations says there is one case in every single five-ten,000 Americans. Other sources say one particular in 400,000. Even now other estimates exist. It is no doubt difficult to choose who has it, if they are even mindful of it.

Regular treatment method? Depends on the sort one particular has. There are 6 key types and five or more small variations. Prescription and OTC painkillers, muscle relaxants, antidepressants, and anti-hypertensives are regularly used to treat the signs and symptoms and problems. A lot of EDS sufferers are increasingly attempting Kratom.

Therapy from a wholistic standpoint would contain dietary supplements recognized to build wholesome collagen. Naturopaths teach that every person requirements supplements to assistance healthy growth, fix, and upkeep of all tissues in a usually nutrient-deficient diet regime. When Naturopathic Physician Peter Glidden was asked if genetic ailments could be aided with scientific nutrition, he gave examples of rewards he has noticed in the program of his 27 years of clinical experience.

Testimonies Gathered from EDS sufferers who use Kratom

Kathrynn: “Ehlers-Danlos Syndrome causes a whole lot of subluxations and dislocations of joints, increases the danger of falls and injury, and is painful and exhausting all by itself just since of the sheer work that our muscle groups should do to sustain stability in the absence of adequate assistance from tendons and ligaments ***due to the collagen defect***. Kratom is this kind of a godsend to give rest and relief from these symptoms.”

When asked if EDS runs in her household. She replied: “I am the first to be “officially” diagnosed but yes, we see the proof of it. My son has it as effectively.”

Jen: “I’m a random mutant. 1st case in the family members. #SwitchedAtBirth”

Jen: “As for EDS: I have brittle bones and serious hypermobility. The continual stretching of the connective tissue in and about my joints has made it really difficult for me to obtain muscle strength (stronger muscles would help preserve the joints stable, although the muscle tissue is also not standard). Kratom aids me with the fatigue and the discomfort, with out the “high” feeling that I get from opiates/opioids.

Amanda: “I have EDS and fibro(myalgia). This totally sucks.”

Jen: “Been informed that I have fibro too, but the EDS is reason adequate to lead to ALL of the concerns that they say are fibro.”

Amanda: “Yup — and they utilized to say that fibro doesn’t influence or harm your joints. But now they’re saying it does. I truthfully believe that tons of people are just misdiagnosed. I noticed a geneticist final week who does not know his (butt) from a hole in the wall. I posted about it in an Illinois EDS group, so I’m rather considerably screwed on getting an actual diagnosis unless my GP does some studying, which typically he will. There is only genuinely two people in Illinois that know sufficient. A single is Dr.Tinkle in Chicago, who’s waiting record is closed. The other a single is in Urbana, and does not consider adults. So yeah, my doc currently thinks it is my answer though.”

Irene: “My husband and I, plus our youngest two, have EDS. We are on our second week of utilizing kratom. So far, it has eased my husband’s joint soreness and my back soreness. In truth, I haven’t taken my prescribed norco because beginning kratom. One of my daughters reports pain considerable soreness relief also. The youngest daughter chose to be our ‘control’. She nonetheless has continual pain.”

Amanda: “With EDS I get a good deal of subluxations. My index finger on my right hand dislocates typically, creating my hand to ache. Any time I select up anything with weight, it pulls outwards, and is kinda gross. My correct shoulder subluxes frequently. My knees wiggle around A Good deal. When I lift my leg to walk, the bones of my reduce leg pull out and forward so when I step back down it slams back into spot. I get a lot of tight muscle groups and muscle spasms from my muscles attempting to hold things in location. And I also get a whole lot of migraines from my neck. My hips like to shift so they are not even and that triggers a good deal of soreness when I’m on my feet all day. And let’s not neglect the loose bowels. (hahahahaha) Kratom assists the soreness. The discomfort of the muscle tissues, the nerves that get jolted and pinched when issues are going in and out all the time. It keeps me at operate most of the time. When my shoulder is pinching and I’m in tears, it calms it down to a tolerable level so I can get up, get out, and do my point. It will take the ache down in my hand so at operate I can jump on a register and assist instead of saying it hurts as well a lot. I come to feel far more productive and helpful. And let’s not forget it assists these bowels also. When I’m exhausted from my body holding itself together, I include in some White Vein Kratom to keep my energy up. And being in significantly less ache aids my moods. I’m not as grumpy or depressed. YAY KRATOM!

Jen: “There are so many things that make it complex, and so many sorts. Some people have gastroparesis, dysautonomia, vascular problems, and the checklist goes on. It would take a book to cover all the various problems and what all-natural treatments may well assist.”

Amanda: “Another tip to deal with EDS is to maintain your muscle groups strong. Do muscle building exercises whether you come to feel like you need to have them or not. And my medical professional informed me not to dare take it easy on myself. Since I heeded that advice I’ve been carrying out a good deal greater. Items are not slipping out of area as a lot any longer.

“Just by currently being me and carrying out the factors at function that other people get astonished that a lady does, keeps me stronger. Management wasn’t letting me do some of these factors. Even the little items, like pushing the buying carts in the door. They did not want me to get harm. But when I last but not least place my foot down, started out pushing carts and carrying out the carry outs and moving the heavy things, my shoulder stopped slipping out. And I’ve had fewer headaches. And I’ve ditched the knee braces.”

Author Paul Kemp has created a pastime of finding normal methods that wholistic doctors use to appropriate health-related concerns, mainly blood-sugar-related. He writes regularly about the outcomes he and other folks have noticed employing kratom.

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Ehlers-Danlos Syndrome (EDS) and Kratom