Tag Archives: syndrome

Irish abortion vote: ‘propagandistic’ use of children with Down’s syndrome condemned

A doctor, author and father of a son with Down’s syndrome has hit out at Ireland’s anti-abortion lobby for using children with the condition during campaigning for Friday’s referendum.

With only days left before the Irish electorate votes on whether to introduce limited abortion into the state’s hospitals, Dr Chris Kaposy has condemned the “propagandistic use” of children like his son by anti-abortion campaigners.

Kaposy – a bioethicist who has written a book around the ethics of prenatal testing “from a pro-choice, disability-positive perspective” – has accused the opponents of Irish abortion reform of dragging “a vulnerable group into a contentious political debate”.

On Friday, Irish voters will decide whether to repeal the 8th amendment to the country’s constitution, which gives equal right to life to both the foetus and mother from the moment of conception.

The electorate will also be asked, if the 8th is abolished, to enable the Irish parliament to draw up legislation that would legalise abortion in hospitals for pregnancies up to 12 weeks.

Anti-abortion campaigners have claimed in poster ads that repealing the 8th amendment would lead to widespread aborting of foetuses diagnosed with Down’s syndrome.

They have used pictures of children with Down’s syndrome on billboards with the message: “In Britain, 90% of babies with Down’s syndrome are aborted.”

Kaposy’s criticisms echo those of the Irish prime minister, Leo Varadkar, who has described the use of images of children with Down’s syndrome in the referendum campaign as wrong.

Referring to his nine-year-old son, Aaron, Kaposy said: “As the father of a child with Down’s syndrome, I am opposed to the propagandistic use of people like my son in attempts to limit reproductive rights, as has happened in the Irish debate, as well as in the legislative actions taken in various American states to outlaw the abortion of foetuses with Down’s syndrome.”

Quick guide

The Irish abortion referendum

The Irish abortion referendum

Ireland is to vote on abortion law reform next month. In a referendum on 25 May, voters will decide if they want to repeal an article in the republic’s constitution known as the eighth amendment. 

The amendment, or article 40.3.3 of the constitution, gives unborn foetuses and pregnant mothers an equal right to life – in effect a ban on abortion. Currently, terminations are allowed only when the life of the mother is at risk, with a penalty of up to 14 years in prison for breaking the law. 

The government in Dublin has promised to introduce legislation allowing for abortions during the first 12 weeks of pregnancy if the vote goes in favour of repeal.

Photograph: Clodagh Kilcoyne/X03756

Irish anti-abortion campaign groups have claimed that a Down’s syndrome diagnosis could be used to access a termination under liberalised abortion laws. Kaposy, however, said the proposed reforms would not allow a Down’s syndrome diagnosis to be a reason for an abortion.

“It is difficult to predict,” he said. “In one study from the US, the [average] gestational age at abortion [in cases of Down’s syndrome] was 13 weeks, though there is a trend toward earlier abortion with improved screening tests. Further, Down’s syndrome is not a condition that typically threatens the life of the pregnant woman, nor does it cause serious health risks in pregnancy, not is it a condition that is typically fatal in utero or soon after birth.”

Kaposy, who lectures in bioethics at Memorial University in Canada, said he believed more children with Down’s syndrome should be brought into families like his own.

“People with Down’s syndrome tend to lead flourishing lives. Their families typically thrive. Perhaps more parents would choose children with this condition if they knew these facts. Prospective parents should be empowered to make choices in favour of parenting children with disabilities like Down’s syndrome, rather than being prohibited from choosing against disabilities.”

My son has Down’s syndrome – and he belongs in a mainstream school | Sally Phillips

I realise me writing about Finnish education may require an awkward introduction. Some may know me from television, playing such roles as “whore in a helicopter” offering my services to newly elected MPs in Armando Iannucci’s Election Night Armistice, or not starring in Miranda Hart’s Miranda. Or from film, being the one who doesn’t snog Colin Firth, Hugh Grant or Patrick Dempsey in Bridget Jones’s Diary I, II and III. More recently, I got to be crashingly rude to Seinfeld legend Julia Louis-Dreyfus’s vice-president, in the HBO sitcom Veep. This character happened to be from Finland.

Veep is part-improvised, so, for research, I cyberstalked Finnish politicians on YouTube and keep a store of pleasing Finnish facts for emergencies. It’s an inexpressible pleasure waiting for precisely the right moment to release the information that Helsinki has a Burger King with a sauna or reference Finnish heavy metal. My character, Minna, is notable for her tendency to tag on an overshare: “Finland tops both the Yale environmental sustainability index and the UN development technological achievement table. Coincidentally, we also lead the world in coffee consumption and use of sex toys.”


Appropriately supported, kids with Down’s syndrome do miles better in mainstream education

I became obsessed with the Finnish education system after the 2010 documentary Waiting for Superman highlighted problems with US education. Finland, in contrast, has topped educational tables for more than 20 years. This is interesting to me because Finland also has the most inclusive education system in the world and my son, Olly, has Down’s syndrome.

Appropriately supported, kids with Down’s syndrome (DS) do miles better in mainstream education. Olly is in year 8 and loves his school, but it is struggling. Around here, kids with DS end up in special schools by year 9. In Finland less than 2% of disabled children go to special schools, and they got rid of their grammar school equivalents 40 years ago, so the vast majority of Finnish children are learning, playing and growing up together. In Finland, kids don’t fail; instead, teaching adapts. Whether a child needs extra help because there’s trouble at home, Finnish isn’t their first language or they have a disability, teachers will do what it takes to get them learning; 30% of Finland’s children receive some kind of special help during their first nine years of school.

There are so many bright and talented disabled children who could shine in mainstream schools with the right support. Yet the current political debate in the UK is moving against inclusion, as if it were an unrealistic ideology that always resulted in lower standards. Finland’s success suggests the opposite.

We need an inclusive education system for so many reasons. We need it so kids with additional needs can participate in the cultural and economic activities of the communities in which they live. The Prison Reform Trust reports that 70% of people admitted to prison require mental health support. The impact of excluding kids is huge and long-lasting.

We need it for typical kids – because they need to know who their neighbours are. They need to know that humans are a diverse breed but that we can have rewarding relationships. A 2010 study by the US Department of Justice showed that disabled teens between 12 and 15 years old were twice as likely to be victims of violent crime as teens without disabilities. In the UK, disability hate crime against children has increased by 150% between 2014 and 2016. We can do something about this by knowing each other and being known. Children learn so much from each other, not least how to be kind to someone who finds life harder than they do.

Lastly we need it because a diverse society is a richer society. I recently met a Finnish mother whose antenatal screening showed that her child had a high probability of being born with Down’s syndrome. “I’ll keep it,” she said. “In Finland we all grow up together, I have friends with Down’s syndrome. Besides,” she added, “Finnish women are strong.”

I’ve been an actor 20 years, so it’s rather galling to have to recognise the growing impact documentaries are having on the world. Now I’m working with the Videocamp Film Fund 2018, which launched at the UN on World Down’s Syndrome Day, in partnership with Unicef. It offers one film-maker $ 400,000 to make a film on the theme of inclusive education.

The fund exists to get films that change minds and provoke debate out to the widest possible audience. Access to its catalogue of films is free, so anyone, anywhere in the world can organise a pop-up screening. So far Videocamp has made more than 19,000 screenings possible, and they have been held everywhere from the UN to the Amazon. Stories of inclusion in education need to be brought to life in all their personal, painful, comic, mundane and heartwarming reality. The immense sense of victory after a learning breakthrough, the family hugs and battles at the school gate, the irrepressible joy of getting the giggles with your friends in assembly. If people can see that on the big screen perhaps government policy can begin to shift too.

Sally Phillips is an actor

My son has Down’s syndrome – and he belongs in a mainstream school | Sally Phillips

I realise me writing about Finnish education may require an awkward introduction. Some may know me from television, playing such roles as “whore in a helicopter” offering my services to newly elected MPs in Armando Iannucci’s Election Night Armistice, or not starring in Miranda Hart’s Miranda. Or from film, being the one who doesn’t snog Colin Firth, Hugh Grant or Patrick Dempsey in Bridget Jones’s Diary I, II and III. More recently, I got to be crashingly rude to Seinfeld legend Julia Louis-Dreyfus’s vice-president, in the HBO sitcom Veep. This character happened to be from Finland.

Veep is part-improvised, so, for research, I cyberstalked Finnish politicians on YouTube and keep a store of pleasing Finnish facts for emergencies. It’s an inexpressible pleasure waiting for precisely the right moment to release the information that Helsinki has a Burger King with a sauna or reference Finnish heavy metal. My character, Minna, is notable for her tendency to tag on an overshare: “Finland tops both the Yale environmental sustainability index and the UN development technological achievement table. Coincidentally, we also lead the world in coffee consumption and use of sex toys.”


Appropriately supported, kids with Down’s syndrome do miles better in mainstream education

I became obsessed with the Finnish education system after the 2010 documentary Waiting for Superman highlighted problems with US education. Finland, in contrast, has topped educational tables for more than 20 years. This is interesting to me because Finland also has the most inclusive education system in the world and my son, Olly, has Down’s syndrome.

Appropriately supported, kids with Down’s syndrome (DS) do miles better in mainstream education. Olly is in year 8 and loves his school, but it is struggling. Around here, kids with DS end up in special schools by year 9. In Finland less than 2% of disabled children go to special schools, and they got rid of their grammar school equivalents 40 years ago, so the vast majority of Finnish children are learning, playing and growing up together. In Finland, kids don’t fail; instead, teaching adapts. Whether a child needs extra help because there’s trouble at home, Finnish isn’t their first language or they have a disability, teachers will do what it takes to get them learning; 30% of Finland’s children receive some kind of special help during their first nine years of school.

There are so many bright and talented disabled children who could shine in mainstream schools with the right support. Yet the current political debate in the UK is moving against inclusion, as if it were an unrealistic ideology that always resulted in lower standards. Finland’s success suggests the opposite.

We need an inclusive education system for so many reasons. We need it so kids with additional needs can participate in the cultural and economic activities of the communities in which they live. The Prison Reform Trust reports that 70% of people admitted to prison require mental health support. The impact of excluding kids is huge and long-lasting.

We need it for typical kids – because they need to know who their neighbours are. They need to know that humans are a diverse breed but that we can have rewarding relationships. A 2010 study by the US Department of Justice showed that disabled teens between 12 and 15 years old were twice as likely to be victims of violent crime as teens without disabilities. In the UK, disability hate crime against children has increased by 150% between 2016 and 2016. We can do something about this by knowing each other and being known. Children learn so much from each other, not least how to be kind to someone who finds life harder than they do.

Lastly we need it because a diverse society is a richer society. I recently met a Finnish mother whose antenatal screening showed that her child had a high probability of being born with Down’s syndrome. “I’ll keep it,” she said. “In Finland we all grow up together, I have friends with Down’s syndrome. Besides,” she added, “Finnish women are strong.”

I’ve been an actor 20 years, so it’s rather galling to have to recognise the growing impact documentaries are having on the world. Now I’m working with the Videocamp Film Fund 2018, which launched at the UN on World Down’s Syndrome Day, in partnership with Unicef. It offers one film-maker $ 400,000 to make a film on the theme of inclusive education.

The fund exists to get films that change minds and provoke debate out to the widest possible audience. Access to its catalogue of films is free, so anyone, anywhere in the world can organise a pop-up screening. So far Videocamp has made more than 19,000 screenings possible, and they have been held everywhere from the UN to the Amazon. Stories of inclusion in education need to be brought to life in all their personal, painful, comic, mundane and heartwarming reality. The immense sense of victory after a learning breakthrough, the family hugs and battles at the school gate, the irrepressible joy of getting the giggles with your friends in assembly. If people can see that on the big screen perhaps government policy can begin to shift too.

Sally Phillips is an actor

Seven ways … to manage irritable bowel syndrome

Irritable bowel syndrome may be inherited. It is linked to oversensitive nerves in the gut, causing debilitating pains and cramps among other symptoms. But there are ways to manage it and reduce its impact on your life.

Consider medication

Speak to your doctor about what is recommended for your particular type of IBS. If you have IBS with constipation (IBS-C), then laxatives could help. These range from osmotic laxatives, which increase water inside the colon, to cathartic laxatives, which stimulate the colon walls, although the latter may not be effective long-term. If you have IBS with diarrhoea (IBS-D), then over-the-counter medications such as loperamide can help control your symptoms.

Try probiotics

Research has suggested that changes in gut flora may trigger IBS by increasing inflammation and altering digestive motility. For some people, probiotics – available in capsules, powders and yoghurts – can alleviate symptoms, balancing gut flora by inhibiting the growth of disease-causing bacteria, slowing down bowel movements and fighting inflammation.

Move to a high-fibre diet

If you have IBS-C or IBS-D, then increasing dietary fibre with fruit, vegetables, beans, whole-grain breads and cereals may relieve symptoms. High-fat meals can cause problems by inducing vigorous colon contractions more rapidly than usual, which can trigger cramping and diarrhoea. However, IBS has quite a wide spectrum and only one in six IBS patients experience improvements from this diet. Others find that it worsens symptoms, and may benefit from a different regime such as a ketogenic (low carb) diet, aimed at reducing inflammation.

Take exercise

Research has suggested that 30 minutes of exercise, such as walking at a moderate pace, five days a week can significantly help to ease common symptoms such as constipation and abdominal cramps. It is best to consult your doctor about what exercise regime may be suitable, but try to keep a routine so you exercise at the same time each day and avoid exercising within an hour of meals.

Reduce your stress levels

Stress is widely thought to trigger IBS, partly because of the neural connections between the brain and the gut, and any external stressors make the mind more aware of painful colon spasms. IBS may be an auto-immune disorder, and the immune system is heavily affected by stress. Try to make time in your day for relaxation sessions and, if you have a stressful life, consider taking up yoga or meditation, or practise breathing exercises.

Keep a food diary

IBS patients have different triggers, so keep a daily diary of all the foods and drinks that make your symptoms flare up. If you experience bloating, you may want to try eliminating gas-producing foods such as resistant starch (found in cold potatoes and bread), beans, cruciferous vegetables such as cabbage, and carbonated drinks. Fructose, found in sweet vegetables and fruit, can also trigger diarrhoea, gas and bloating in IBS sufferers, and it is worth remembering that one in 10 IBS sufferers are lactose intolerant, so minimising dairy products can provide relief. Caffeine can make diarrhoea worse, so limit coffee and tea to three cups a day.

Try peppermint oil

Studies have shown that peppermint oil may be effective in reducing the severity of abdominal cramps and spasms, bloating and the intensity of bowel movement urgency and pain when passing stools, particularly in patients with IBS-D. Try purchasing enteric-coated peppermint oil, specially coated tablets that slowly release the oil in the small intestine.

Seven ways … to manage irritable bowel syndrome

Irritable bowel syndrome may be inherited. It is linked to oversensitive nerves in the gut, causing debilitating pains and cramps among other symptoms. But there are ways to manage it and reduce its impact on your life.

Consider medication

Speak to your doctor about what is recommended for your particular type of IBS. If you have IBS with constipation (IBS-C), then laxatives could help. These range from osmotic laxatives, which increase water inside the colon, to cathartic laxatives, which stimulate the colon walls, although the latter may not be effective long-term. If you have IBS with diarrhoea (IBS-D), then over-the-counter medications such as loperamide can help control your symptoms.

Try probiotics

Research has suggested that changes in gut flora may trigger IBS by increasing inflammation and altering digestive motility. For some people, probiotics – available in capsules, powders and yoghurts – can alleviate symptoms, balancing gut flora by inhibiting the growth of disease-causing bacteria, slowing down bowel movements and fighting inflammation.

Move to a high-fibre diet

If you have IBS-C or IBS-D, then increasing dietary fibre with fruit, vegetables, beans, whole-grain breads and cereals may relieve symptoms. High-fat meals can cause problems by inducing vigorous colon contractions more rapidly than usual, which can trigger cramping and diarrhoea. However, IBS has quite a wide spectrum and only one in six IBS patients experience improvements from this diet. Others find that it worsens symptoms, and may benefit from a different regime such as a ketogenic (low carb) diet, aimed at reducing inflammation.

Take exercise

Research has suggested that 30 minutes of exercise, such as walking at a moderate pace, five days a week can significantly help to ease common symptoms such as constipation and abdominal cramps. It is best to consult your doctor about what exercise regime may be suitable, but try to keep a routine so you exercise at the same time each day and avoid exercising within an hour of meals.

Reduce your stress levels

Stress is widely thought to trigger IBS, partly because of the neural connections between the brain and the gut, and any external stressors make the mind more aware of painful colon spasms. IBS may be an auto-immune disorder, and the immune system is heavily affected by stress. Try to make time in your day for relaxation sessions and, if you have a stressful life, consider taking up yoga or meditation, or practise breathing exercises.

Keep a food diary

IBS patients have different triggers, so keep a daily diary of all the foods and drinks that make your symptoms flare up. If you experience bloating, you may want to try eliminating gas-producing foods such as resistant starch (found in cold potatoes and bread), beans, cruciferous vegetables such as cabbage, and carbonated drinks. Fructose, found in sweet vegetables and fruit, can also trigger diarrhoea, gas and bloating in IBS sufferers, and it is worth remembering that one in 10 IBS sufferers are lactose intolerant, so minimising dairy products can provide relief. Caffeine can make diarrhoea worse, so limit coffee and tea to three cups a day.

Try peppermint oil

Studies have shown that peppermint oil may be effective in reducing the severity of abdominal cramps and spasms, bloating and the intensity of bowel movement urgency and pain when passing stools, particularly in patients with IBS-D. Try purchasing enteric-coated peppermint oil, specially coated tablets that slowly release the oil in the small intestine.

Seven ways … to manage irritable bowel syndrome

Irritable bowel syndrome may be inherited. It is linked to oversensitive nerves in the gut, causing debilitating pains and cramps among other symptoms. But there are ways to manage it and reduce its impact on your life.

Consider medication

Speak to your doctor about what is recommended for your particular type of IBS. If you have IBS with constipation (IBS-C), then laxatives could help. These range from osmotic laxatives, which increase water inside the colon, to cathartic laxatives, which stimulate the colon walls, although the latter may not be effective long-term. If you have IBS with diarrhoea (IBS-D), then over-the-counter medications such as loperamide can help control your symptoms.

Try probiotics

Research has suggested that changes in gut flora may trigger IBS by increasing inflammation and altering digestive motility. For some people, probiotics – available in capsules, powders and yoghurts – can alleviate symptoms, balancing gut flora by inhibiting the growth of disease-causing bacteria, slowing down bowel movements and fighting inflammation.

Move to a high-fibre diet

If you have IBS-C or IBS-D, then increasing dietary fibre with fruit, vegetables, beans, whole-grain breads and cereals may relieve symptoms. High-fat meals can cause problems by inducing vigorous colon contractions more rapidly than usual, which can trigger cramping and diarrhoea. However, IBS has quite a wide spectrum and only one in six IBS patients experience improvements from this diet. Others find that it worsens symptoms, and may benefit from a different regime such as a ketogenic (low carb) diet, aimed at reducing inflammation.

Take exercise

Research has suggested that 30 minutes of exercise, such as walking at a moderate pace, five days a week can significantly help to ease common symptoms such as constipation and abdominal cramps. It is best to consult your doctor about what exercise regime may be suitable, but try to keep a routine so you exercise at the same time each day and avoid exercising within an hour of meals.

Reduce your stress levels

Stress is widely thought to trigger IBS, partly because of the neural connections between the brain and the gut, and any external stressors make the mind more aware of painful colon spasms. IBS may be an auto-immune disorder, and the immune system is heavily affected by stress. Try to make time in your day for relaxation sessions and, if you have a stressful life, consider taking up yoga or meditation, or practise breathing exercises.

Keep a food diary

IBS patients have different triggers, so keep a daily diary of all the foods and drinks that make your symptoms flare up. If you experience bloating, you may want to try eliminating gas-producing foods such as resistant starch (found in cold potatoes and bread), beans, cruciferous vegetables such as cabbage, and carbonated drinks. Fructose, found in sweet vegetables and fruit, can also trigger diarrhoea, gas and bloating in IBS sufferers, and it is worth remembering that one in 10 IBS sufferers are lactose intolerant, so minimising dairy products can provide relief. Caffeine can make diarrhoea worse, so limit coffee and tea to three cups a day.

Try peppermint oil

Studies have shown that peppermint oil may be effective in reducing the severity of abdominal cramps and spasms, bloating and the intensity of bowel movement urgency and pain when passing stools, particularly in patients with IBS-D. Try purchasing enteric-coated peppermint oil, specially coated tablets that slowly release the oil in the small intestine.

Seven ways … to manage irritable bowel syndrome

Irritable bowel syndrome may be inherited. It is linked to oversensitive nerves in the gut, causing debilitating pains and cramps among other symptoms. But there are ways to manage it and reduce its impact on your life.

Consider medication

Speak to your doctor about what is recommended for your particular type of IBS. If you have IBS with constipation (IBS-C), then laxatives could help. These range from osmotic laxatives, which increase water inside the colon, to cathartic laxatives, which stimulate the colon walls, although the latter may not be effective long-term. If you have IBS with diarrhoea (IBS-D), then over-the-counter medications such as loperamide can help control your symptoms.

Try probiotics

Research has suggested that changes in gut flora may trigger IBS by increasing inflammation and altering digestive motility. For some people, probiotics – available in capsules, powders and yoghurts – can alleviate symptoms, balancing gut flora by inhibiting the growth of disease-causing bacteria, slowing down bowel movements and fighting inflammation.

Move to a high-fibre diet

If you have IBS-C or IBS-D, then increasing dietary fibre with fruit, vegetables, beans, whole-grain breads and cereals may relieve symptoms. High-fat meals can cause problems by inducing vigorous colon contractions more rapidly than usual, which can trigger cramping and diarrhoea. However, IBS has quite a wide spectrum and only one in six IBS patients experience improvements from this diet. Others find that it worsens symptoms, and may benefit from a different regime such as a ketogenic (low carb) diet, aimed at reducing inflammation.

Take exercise

Research has suggested that 30 minutes of exercise, such as walking at a moderate pace, five days a week can significantly help to ease common symptoms such as constipation and abdominal cramps. It is best to consult your doctor about what exercise regime may be suitable, but try to keep a routine so you exercise at the same time each day and avoid exercising within an hour of meals.

Reduce your stress levels

Stress is widely thought to trigger IBS, partly because of the neural connections between the brain and the gut, and any external stressors make the mind more aware of painful colon spasms. IBS may be an auto-immune disorder, and the immune system is heavily affected by stress. Try to make time in your day for relaxation sessions and, if you have a stressful life, consider taking up yoga or meditation, or practise breathing exercises.

Keep a food diary

IBS patients have different triggers, so keep a daily diary of all the foods and drinks that make your symptoms flare up. If you experience bloating, you may want to try eliminating gas-producing foods such as resistant starch (found in cold potatoes and bread), beans, cruciferous vegetables such as cabbage, and carbonated drinks. Fructose, found in sweet vegetables and fruit, can also trigger diarrhoea, gas and bloating in IBS sufferers, and it is worth remembering that one in 10 IBS sufferers are lactose intolerant, so minimising dairy products can provide relief. Caffeine can make diarrhoea worse, so limit coffee and tea to three cups a day.

Try peppermint oil

Studies have shown that peppermint oil may be effective in reducing the severity of abdominal cramps and spasms, bloating and the intensity of bowel movement urgency and pain when passing stools, particularly in patients with IBS-D. Try purchasing enteric-coated peppermint oil, specially coated tablets that slowly release the oil in the small intestine.

Gene therapy for ‘bubble baby’ syndrome approved on NHS

The NHS will fund gene therapy for the first time after the UK’s healthcare cost watchdog approved treatment for the so-called “bubble baby” syndrome, despite a price tag of more than £500,000.

The treatment is used against adenosine deaminase deficiency, or ADA-SCID, which disables the immune system and means that children with the illness have to be kept in isolation to avoid infection – hence the “bubble baby” name.

The National Institute for Health and Care Excellence (Nice) said in draft guidance published on Friday that GlaxoSmithKline’s Strimvelis gene therapy for the condition improves overall survival compared with standard stem cell transplant therapy.

Gene therapy is designed to deliver a one-off cure for the patient, and drug-makers are typically asking a hefty price that is comparable to the combined costs of alternative life-long treatment. The Strimvelis therapy is so specialised that it is only offered by one hospital, which is in Italy.

“Strimvelis represents an important development in the treatment of ADA-SCID, offering the potential to cure the immune aspects of the condition and avoid some of the disadvantages of current treatments,” Nice said.

“Costing €594,000 [£530,000], the treatment is usually given once only and the effects are thought to be life-long,” it added. It said that the treatment would give children a better chance of being able to live a more normal life, going to school and mixing with friends without fear of a life-threatening infection.

The draft guidance marks the first time Nice has applied its new cost-effectiveness limits for treatments for very rare conditions.

I had chronic fatigue syndrome. The Lightning Process at least offers hope | Vonny Leclerc

She thought I was dead. You come home, call out, no answer. You walk in to find your 16-year-old crumpled on the dining-room floor. Drugs? Alcohol? It’s a leap the brain makes. Being so tired that they collapsed on the spot doesn’t feature. Months later, after all but abandoning school, I was told it was myalgic encephalopathy (ME), more commonly known as chronic fatigue syndrome (CFS). It was a diagnosis that felt like little more than a question mark. I’ve long since recovered, but I’m still frustrated by the lack of options for sufferers. How long will they have to wander this wasteland of unanswerables?

But there is perhaps a glimmer on the horizon. A small trial has shown that a commercial therapy called the Lightning Process helped speed up recovery for some youngsters. Though experts have dismissed it as junk science based on the shonky, largely debunked theory of neuro-linguistic programming, there’s a website full of testimonies, and celebrity endorsements. The whole thing has a cult-cum-televangelist piquancy that would crinkle the nose of most sceptics.

But the internet is febrile with discussion – especially now there’s been a positive result. CFS is poorly understood, so near-impossible to treat effectively. This therapy – however tenuous a hope – looks like a lifeline; if I’d been given the chance to try it, I would have. In fact, I’d have had to, because doctors offered me no help other than the name of the ME Association scribbled on a Post-it.

So much of CFS management comes down to personal experimentation informed by anecdote. Being a teenager is a multiplier for despair – it’s no wonder young people are clamouring to try the Lightning Process. Not knowing what was going on or how to make it better was torture, so I tried anything – acupuncture, homeopathy, acrid aloe vera shots. I needed some hope that my situation might improve.

I was born in 1987, the year “yuppie flu” made it into the dictionary; 16 years on, when I developed it, the label still clung. CFS arrives bound in its own mythology, and I didn’t have the energy or enough good information to protest about its dismissal. If the professionals couldn’t explain it, how could I? I’d become the class basket case. At 15, I was a straight-A student heading for law school. Then a mild virus became an ellipsis, a long drawn-out syllable of thing. At 16, fatigue set down roots, and my immediate future clouded over. My life slipped into slo-mo, while those of my peers’ gathered pace. Boys. Girls. Drinking. Sex. Adventures. They dipped digits in adulthood, while most days my toes never made it past the duvet.

I missed my higher maths class – that is a measure of how far I’d slipped out of reality. I was living an adjacent life of the teenage recluse. Deciphering class notes in bed, trying to cheat tiredness with Red Bull, lying on the floor drawing blue pastel hands so I wouldn’t fail art. One friend would visit, climb into my bunk, and just lie with me. CFS changed everything.

Then there was the aching, the dizziness, and the thick, milky cataract that grew over my mind. I remember lying in bed thinking about Slaughterhouse-Five, about the sybaritic pleasure of reading, picking out phrases I could recall: “Everything was beautiful and nothing hurt.” I ached to luxuriate in words, my now inaccessible refuge. Reading was like catching water in your hands; the words pooled for a moment, then slipped and were gone. I could do without boys if I could have books. It seemed unreasonably cruel to be denied both.

On one of the rare days that I’d managed to make it into school, a teacher pulled me aside, recognising that I was lost. He had wandered the same desert, thirsty for a cure. I leaned on the bench because standing was impossible, and he confided in me. It was an adult conversation, nothing about school work, just the honest dispatches from one sufferer to another. He’d tried a raw food vegan diet and pulled himself back to health. This was a man of science trading in folk remedies and Chinese whispers because to linger in the nothingness would have consumed him. We have to engineer our own coping mechanisms, because they are all we have while we wait for medicine to catch up. I went home and gave up meat.

If the Lightning Process, working alongside medicine, has shown results, it’s worth investigating. Young people with CFS need something to keep the flame of hope alive. They can’t sit around waiting for medicine to figure it out, while they, on the brink of everything, desperate to join the rank and file of carefree teens, can do nothing. It’s indescribably distressing to watch friends blossom into adulthood while you’re shoved into stasis by a mystery illness. They party while you sleep. They learn to drive while you sleep. They fall in love while you sleep.

ME is so much more than the symptoms – the truly devastating thing about it is how it makes you feel about yourself, as anxiety, depression and illness blight your “best years”. If this therapy can help stop the slow creep of hopelessness, or the submission to a condition, then it’s worth trying. Can you think yourself well? Maybe not. But the placebo effect is a powerful thing and believing there was a chance of getting well, even for a while, would have kept me afloat when I felt I was drowning.

Vonny Leclerc is an arts journalist and social activist

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Controversial Lightning Process ‘helps children with chronic fatigue syndrome’

A controversial treatment for chronic fatigue syndrome (CFS) called the Lightning Process can help children get better, a trial has shown, much to the surprise of the doctor who put it to the test.

One in every 100 children of secondary school age has CFS, also known as ME, and it can wreck their lives. Those affected miss a year of school on average, many of them getting to classes on just two days a week. Half are bedbound at some stage.

Esther Crawley, a paediatrician and professor of child health at Bristol University, runs the biggest centre for children with CFS in the country, seeing about 400 patients a year. She embarked on a trial of the commercial Lightning Process because the children she cares for and their parents were interested in it.

“Every single week in my clinic, children came up to me and said we want to know about the Lightning Process. People have told us to try it. Should we have it?” she said. “It was fascinating at the time. We heard about people getting better and people getting worse. I was kind of curious. I never expected that it would work.” If anything, said Crawley, she set up the trial in a way that would make it harder for it to be shown to work.

The Lightning Process is a commercial programme, developed from osteopathy, life coaching and neuro-linguistic programming. It has been endorsed by celebrities like Martine McCutcheon and Esther Rantzen, who credits it for her daughter’s recovery from ME. The course costs around £620. It is billed as training rather than therapy and lasts three intensive days.

The trial was relatively small – 100 young people aged 12 to 18 took part, half of whom had the usual treatment that Crawley’s team at Bristol’s Royal United Hospital give patients, while the other half had that plus the Lightning Process training as well.

Results published in the journal Archives of Disease in Childhood show that children who went through the Lightning Process programme were doing better than the others at six months and had improved still more by 12 months. Physical function, fatigue, anxiety and depression all improved more in the Lightning Process group. Those with the usual treatment – which includes improving sleep, exercise management and sometimes cognitive behaviour therapy – were spending more time in school at the end of a year, up to three days a week. Those who had the Lightning Process as well were in school four days a week.

“There are a lot of limitations,” said Crawley. “The main thing is to be absolutely clear to families that we don’t know if the Lightning Process works on its own. I’m not advocating people go out and get the Lightning Process. And we don’t know if it works for adults and we don’t know if it works for primary school-age children.”

The nature of the course put off many children from taking part in the trial. It involves three intensive days in a group of other CFS sufferers, which is hard for patients to contemplate. But, Crawley said, “This is a good news story.” More studies are needed before it can be considered by the NHS, but it offered real possibility for some children.

The Lightning Process was developed by osteopath Phil Parker in the late 1990s and is offered for a range of conditions. Its use in CFS has been controversial among those highly vocal activists who resist any attempt to suggest the disease is psychological rather than physical. Parker claims that the Lightning Process works by teaching people to use their brain to “stimulate health-promoting neural pathways”.

Those who have been through it say they are taught that negative thoughts and emotions can affect their body’s health. In the only other study done on the process, an analysis of the experiences of a handful of young people from the Harvard School of Public Health, one described using a physical gesture to stop the negativity of the mind. “Whenever you get a negative thought, emotional symptom, you are supposed to turn on one side and with your arm movements in a kind if stop motion, just say STOP very firmly and that is supposed to cut off the adrenaline response,” the young patient said.

Crawley says CFS is caused by a biological response, usually to a viral trigger. Children can be genetically susceptible and do not recover fully after an infection. “CFS is really common and uses up vast amounts of NHS resources,” she says.

But a minority of activists and campaigners who feel CFS is being categorised as a psychological illness are deterring scientists from research and doctors from going into the field to treat people who desperately want to get better. Crawley was attacked for launching the latest trial, as she has been in the past.

“At medical school people are told not to go into [CFS]. As researchers they are told not to go into it because you get so much abuse,” she said. “We still have a condition which is really common and really disabling and children begging for treatment and begging for answers, but people won’t go into it.

“When I think about leaving, which I do a lot, I think about the children who come to my clinics who have miserable lives because current treatment is not effective enough. We have to do research.”

The ME Association said it had “spoken out robustly” about the trial since it first heard about it in 2010. It said it believed such a trial in children was unethical.

“The Lightning Process is not a treatment that we endorse or recommend for people with ME/CFS,” said its medical adviser, Dr Charles Shepherd.

“Patient evidence, gathered from our members over many years, indicates that some people who have gone through the Lightning Process believe that they are able to quickly increase their physical and mental activity levels. However, this is can be followed by a relapse or significant worsening of symptoms.

“Others who have gone through the Lightning Process treatment report that they have spent huge amounts of money with no obvious benefit.”