Chronic Fatigue Syndrome, also known as ME, should be treated with a form of behavioural therapy or exercise, say British scientists.

Writing in The Lancet, they argue that the approach preferred by some charities, managing energy levels, is less successful.

Action for ME disputed the claims, which it said were exaggerated.

A quarter of a million people in the UK have the condition, yet its cause remains unknown.

Symptoms include severe tiredness, poor concentration and memory, muscle and joint pain and disturbed sleep.

This study looked at which treatments were the most successful. It compared CBT (cognitive behavioural therapy – changing how people think and act), graded exercise therapy – gradually increasing the amount of exercise, and adaptive pacing therapy – planning activity to avoid fatigue.

All of the 641 people who took part in the study had chronic fatigue syndrome, but were not bed-bound.

The authors say cognitive behavioural and graded exercise therapies were the most successful, both at reducing fatigue and increasing physical function.

They say that adaptive pacing therapy is little better than basic medical advice.

Professor Michael Sharpe, co-author of the study from the University of Edinburgh, said: “One of the difficulties in the field is ambiguity, what is the cause and most importantly, what is the treatment?

“The evidence up to now has remained controversial. The helpful thing about this trial is that it actually gives pretty clear cut evidence about effectiveness and safety.”

Exaggerated

But the charity Action for ME said the conclusions were exaggerated and questioned the safety of graded exercise therapy.

Its CEO, Sir Peter Spencer, said: “The findings contradict the considerable evidence of our own surveys.

“Of the 2,763 people with ME who took part in our 2008 survey, 82% found pacing helpful, compared with 50% for cognitive behavioural therapy and 45% for graded exercise therapy.

“Worryingly, 34% reported that graded exercise therapy made them worse.”

The authors suggest that poor advice, such as suggestions to just go to the gym, could be responsible for bad experiences with the exercise therapy.

They said that the amount of exercise needed to be tailored to each person.

The Association of Young People with ME welcomed the findings.

It said it hoped that fears about graded exercise and CBT were laid to rest, and that the study needed to be repeated in children.

Professor Willie Hamilton, GP and professor of primary care diagnostics at Peninsula College of Medicine and Dentistry, said: “This study matters, it matters a lot.

“Up until now we have known only that CBT and graded exercise therapy work for some people. We didn’t know if pacing worked. This caused a real dilemma, especially for those in primary care. We didn’t know whether to recommend pacing, or to refer for CBT or GET.

“Worse still, not all GPs have access to CBT or GET, so ended up suggesting pacing almost by default. This study should solve that dilemma.”

NICE (the National Institute for Health and Clinical Excellence) said the findings were in line with current recommendations.

Dr Fergus Macbeth, director of the centre for clinical practice at NICE, said: “We will now analyse the results of this important trial in more detail before making a final decision on whether there is a clinical need to update our guideline.”

Louis Braille is famous for the alphabet he created nearly 200 years ago for blind and partially-sighted people. Less well-known is the fact that he was a talented cellist and organist, which led him to also produce a system of recording music in braille.

Each piece of music is two or three times the bulk of a printed score and production is laborious and slow. Scores were generally only available on demand and most had to be created manually – often by charities or volunteers – using a braille typewriter.

But now, when music scores are published, the braille edition can be produced at the same time, thanks to Lydia Machell from Leeds.

Machell, whose squint in childhood delayed her usable eyesight until a series of operations ended successfully at the age of six, has developed software that converts musical symbols into dots. The score can then be printed out on a braille printer, meaning that music scores are now more easily available to visually impaired musicians.

Machell’s innovation came after a spell distilling complex classical pieces into mobile phone ringtones after apprenticeships in music, computers and publishing respectively. She was pondering other uses of the software when she took a lift and noticed the small braille dots by the floor buttons.

Last year, Machell launched a website, branded as Prima Vista, with an unprecedented range of samples to download, to run off on a braille machine or to be printed at source and posted to arrive within a few days. The response from users was immediate.

“It is making a real change,” says Clare Gaillans, a blind teacher at the Royal College of Music. One of her partially-sighted pupils, 17-year-old Maya, is happily working her way with guitar and voice through songs from Glee, the American high school TV comedy whose material is on the Prima Vista playlist.

Tomoko Endo, a pianist and postgraduate student at the RCM, no longer has to wait her turn at the embossing machine that turns out scores for blind and partially-sighted players such as herself. Running her slender finger along the lines of dots that decode a complex run of quavers and semi-quavers in a Schumann concerto, she says: “Reading the braille is only the beginning. Then you have to memorise it. But this system is giving us so much more, so quickly.”

New measures to crack down on “blue badge” parking abuse are expected to be announced by ministers later.

The badges allow people with disabilities to park for free or on yellow lines, but the system has increasingly been open to abuse.

Critics say some local authorities give them out too easily and do not punish those who obtain them fraudulently or allow them to be misused.

One charity has called for consistency in how they are issued.

Blue badges are issued to people who are registered blind, receive a war pensioner’s mobility supplement or higher rate disability living allowance, and to other people with mobility problems who undergo an assessment.

But the number of badges has soared in recent years with an estimated 2.5 million now in circulation nationally.

Consistency

Helen Dolphin, who co-ordinates policy for the disabled motorists charity Mobilise, says there’s a need for much greater consistency with councils taking more care over who gets them.

And Ms Dolphin wants people to be educated about their proper use: “A lot of family members think they can use it even without the disabled person being in the car.

“There are many cases of carers thinking they can use it to park when they go shopping,” she said.

Paul Slowey, of Blue Badge Fraud Investigation Ltd, which investigates blue badge abuse on behalf of councils, says that in some city areas up to 50% of badges are being wrongly used.

He says the powers are there for local authorities to mount prosecutions for fraud when they detect misuse, but “historically enforcement has been dreadful”.

Mr Slowey points to the rail network where ticket fraud fell after companies introduced strict measures aimed at fare dodgers.

“If the use of blue badges is enforced properly then the scheme will function as it should,” he said.

A Hampshire woman has received the UK’s first totally implanted hearing aid.

The Otologics Carina middle ear implant device consists of a rechargeable battery, a signal processor and a microphone implanted under the skin.

These are connected to an electromagnetic vibrator inside the mastoid bone behind the ear which attaches to the hearing bones.

Denise Westgate, 49, from Havant, had the operation at Queen Alexandra Hospital in Portsmouth.

She received the hearing aid thanks to work from the South of England Cochlear Implant Centre (SOECIC), based at the University of Southampton, which said it was the first time “a totally implantable device with no external components” had been fitted in a patient in the UK.

The fitting was carried out by consultant otolaryngologist Mike Pringle, who conducted the UK’s first operation last year to fit a single cochlear implant capable of giving sound in both ears.

Ms Westgate’s device is completely invisible from the outside.

In older hearing aids the microphone and battery are on the outside of the patient, held in place over the implanted part of the device by a magnet.

These devices are prone to being knocked off, damaged or getting wet. And when the external part is removed at night or in the shower, the patient can no longer hear.

‘Enormous difference’

The new implant is suitable for people with moderate to severe hearing loss who are unable to use conventional hearing aids because of ear canal infections, allergies to ear moulds or a closed ear canal.

Mrs Westgate lost her hearing when she was six and she cannot wear a conventional hearing aid because of a closed right ear canal.

She said: “I was nervous being the first person to undergo this operation but the difference it has made to my life is enormous.

“Suddenly there is all this sound that hasn’t been there before, something as simple as the sound of water when I am washing my hair or the sound of my husband’s lighter.

“I have to use a charger to charge the internal battery for about 45 minutes every day but otherwise there is no external equipment to wear.

“I can leave it on overnight and can swim and shower with it in place.”

An international team of researchers have found a clue to one of the leading causes of blindness, which they hope could eventually lead to a cure.

Age-related macular degeneration affects 500,000 people in the UK and is incurable.

The study in the journal Nature found an enzyme known as DICER1 that stops functioning, resulting in the illness.

UK experts said it had the potential to be an important breakthrough.

The macula is a part of the eye which sits in the centre of the retina and is responsible for the fine detail at the centre of the field of vision.

As the disease progresses that central vision declines, making reading, driving and recognising people difficult.

It affects one in 50 people over 50 and one in five people over 85.

The exact cause is unknown, but risk factors include smoking, high blood pressure and having relatives with the condition.

Potential breakthrough

The researchers noticed the enzyme DICER1 was less active in the retina of people with the more common “dry form” of the illness and when they turned off the gene which makes the enzyme in mice, then the animal’s retina cells were damaged.

It was then discovered that DICER1 is necessary for destroying small pieces of genetic material called Alu RNA.

Without DICER1, the Alu RNA accumulates with toxic consequences leading to the death of the retina.

Professor Jayakrishna Ambati, from the University of Kentucky, told the BBC: “This work opens many new doors of research.

“First, we need to identify various classes of molecules that can either increase DICER1 levels or block Alu RNA so that these can be evaluated in clinical trials.

“Second, we need to understand more about the biological processes that lead to reduction in DICER1 levels and the precise source of the Alu RNA transcripts.”

Professor Ian Grierson, school of clinical sciences at the University of Liverpool, said: “This is a great piece of science which provides another jigsaw piece which we need to put together with other findings.

“It was done in an animal model which is a long way from the patient, the breakthrough is we’ve got another player.”

Professor Mike Cheetham, head of molecular and cellular neuroscience at UCL, said: “It’s a potentially very important breakthrough which gives insight into this dry form of the disease.

“It could provide new pathways to therapy, but the findings need to be validated by other researchers.”

A Devon man suffering from Tourette’s Syndrome is to undergo a pioneering form of brain surgery.

Mike Sullivan, 32, from Exeter, will have deep brain stimulation to help reduce his involuntary tics.

It sends electrical impulses to control brain activity and has proved effective in treating Parkinson’s disease, cluster headaches and depression.

Tourette’s is a neurological disorder thought to occur if there is a problem with nerves communicating in the brain.

People suffering from Tourette’s usually have both motor and vocal tics.

Mr Sullivan, who was diagnosed with the condition at the age of 12, became the victim of bullying and teasing at school.

He opted for deep brain stimulation after his condition worsened and symptoms became more frequent.

Mr Sullivan said he has to work hard to suppress the almost continual tics while working with the public at Exeter Register Office. He describes this experience as exhausting and mentally draining.

“I can, up to a point, control it… but I’m always looking for a way out if people are staring,” he told BBC News.

He has tried a number of different medications. None has relieved his symptoms but many have given him serious and unpleasant side effects.

For deep brain stimulation a local anaesthetic is used and electrodes are put into the brain through the skull.

These are linked to a pacemaker-type battery in the patient’s chest then electrical impulses are sent to the brain to block the damaging signals.

Mr Sullivan said he was aware of the risks involved in undergoing brain surgery, but if it led to any improvement in his condition it would be worth it.

‘Reasonably safe’

“Whilst I’m scared and it’s not something I’d choose to do, it’s more than worth the risk,” he said.

“If it improves me even by 5% or 10%, it will make such a massive difference to my quality of life.”

Doctors at the National Hospital for Neurology and Neurosurgery in London are trialling the use of deep brain stimulation to treat not only Tourette’s Syndrome, but Obsessive Compulsive Disorder, which many Tourette’s patients including Mr Sullivan also suffer from.

Only a few procedures have so far been carried out worldwide, but Mr Sullivan has been recommended for treatment by Dr Tim Harrower, a consultant neurologist at the Royal Devon and Exeter Hospital.

“It’s reasonably safe, but still I think Mike’s being extremely brave to do this because it is pioneering and cutting edge,” Dr Harrower said.

Two charities have joined forces to launch a service supporting people with sensory loss across Tayside.

The Royal National Institute of Blind People (RNIB) and the Royal National Institute for Deaf People (RNID) initiative will help people come to terms with sight or hearing loss.

The new projects – called Hear to Help and Looking Forward – will work within local Tayside communities.

The scheme has been funded by the Scottish government.

Those behind the initiative said it was aimed at reducing the loneliness and isolation experienced by people living with sight or hearing loss.

RNIB Scotland said it was a great opportunity to extend services across the region.

Delia Henry, director of RNID Scotland, added: “RNID Scotland’s ‘Hear to Help’ project will provide life-changing support for NHS hearing aid users and help reduce demands on the local audiology departments for post-fitting rehabilitation services.”

An appeal court ruling which denies volunteer workers the anti-discrimination employment protection enjoyed by staff has been described as unfair by the Equality and Human Rights Commission.

In a landmark judgment, the court of appeal ruled against a woman who claimed she had been discriminated against on grounds of disability, after she was told to stop volunteering for Mid-Sussex Citizens Advice.

The woman, named only as “X” by the court, originally lost an employment tribunal hearing against Citizens Advice over the matter in November 2009. Her appeal against the verdict, which included a representation by the EHRC, was based on European equal treatment legislation covering those in “occupation”, a definition the woman argued ought to apply to volunteers. But her case was unanimously rejected by the court of appeal.

The decision, which could have implications for the coalition government’s ‘big society’ plans for local service provision by networks of volunteers, means voluntary workers are not protected by the UK’s Disability Discrimination Act 1995 unless there is a contract between the volunteer and the organisation.

But John Wadham, the EHRC’s legal group director, said the ruling was unfair and suggested it might yet be challenged in the supreme court. “We are disappointed that the court of appeal has decided that volunteers do not have legal protection from workplace discrimination,” he said. “If discrimination laws don’t apply to this sector it will be legal for organisations when taking on people to discriminate against groups such as the disabled or ethnic minorities.

“Given that many employees begin their working life as volunteers, which provides them with valuable experience which they can use as a step up to paid employment, it seems unfair that certain groups of people can legally be denied this experience. If this case does go to the supreme court, the commission will hope to have our views heard.”

In reaching the verdict, the appeal judge Lord Justice Elias said: “Volunteers are extensively employed throughout Europe and it is unrealistic to believe they were intended to be covered by concepts of employment and occupation which would not normally embrace them.”

Jason Galbraith-Marten, the barrister representing Citizens Advice, said the verdict would be a great relief to much of the sector, whose operations inevitably depended greatly on voluntary labour.

“The cost of litigation, successful or otherwise, that would be generated from the extension of anti-discrimination rights, would be too great a financial burden for many [voluntary organisations] to bear,” he said.

Earlier this week, the extent to which the government’s big society plans for local service provision would rely on volunteers became clearer, with a poll showing that 70% of charities saw Cameron’s scheme merely as a cover for budget cuts. “If the big society agenda means anything then community organisations have to be at its heart. If you are cutting them off at the knees it won’t work,” said Sir Stephen Bubb of the Association of Chief Executives of Voluntary Organisations.

Audrey Williams, head of discrimination at law firm Eversheds, said the ruling would provide much-needed clarity for organisations using volunteers. “The big society initiative is clearly encouraging individuals to volunteer and from that perspective the law could do with some clarity, both for individuals and for employers,” she said.

“The reality is that employers are being told they don’t carry the liability for volunteers. Having said that, I think most organisations would want to protect everyone under their roof. Discrimination is not the sort of behaviour anyone would want to tolerate, be it from an employer or an employee.”

A Welsh artist has won one of 13 commissions celebrating arts and culture by disabled and deaf artists during the 2012 Cultural Olympiad.

Kaite O’Reilly of Llanarth, Ceredigion, will join forces with National Theatre Wales on a production based on her project The ‘d’ Monologues.

It will be performed by an ensemble of new, emerging, and established disabled and deaf performers from across the UK.

The 13 commissions for the Unlimited programme are worth £820,000 in total.

The ‘d’ Monologues are described by the Arts Council of Wales as a series of witty and provocative pieces inspired by the experiences, attitudes and imagination of disabled and deaf people.

Ms O’Reilly said the commission would bring deaf and disability culture to a national platform.

“Deaf and disabled practitioners, our perspectives, experiences and aesthetics taking centre stage in a national theatre production has never been done before and sets an extraordinary precedent,” she said.

“I’m delighted and honoured to be the playwright bringing these stories to the fore.”

Nick Capaldi, chief executive of the Arts Council of Wales said: “We are thrilled that The ‘d’ Monologues is to be a part of Unlimited.

“Working with National Theatre Wales will make a significant and powerful statement about the capability of disabled artists, and I’m sure Kaite is looking forward to presenting the work to an international audience as part of London 2012,” he said.

Ruth Mackenzie, director of the Cultural Olympiad, said: “This commission is about world-class artists creating brilliant work which will change perceptions of the work of disabled and deaf artists”.

Awarded by The London 2012 Cultural Olympiad, the UK Arts Councils and the British Council, the works will take place across the UK.

Some will feature collaboration between artists from the UK and other countries including Brazil, China and South Africa.

The Unlimited programme encourages collaborations between disability arts organisations, disabled and deaf artists, producers, and mainstream organisations to celebrate the Olympic and Paralympic Games.

Its total fund of £3m is funded by the National Lottery, and the programme is delivered in Wales by the Arts Council of Wales.

Bipolar Disorder isn’t a conventional subject for artwork but there is nothing conventional about the latest commission for the Cultural Olympiad.

Dance, circus, theatre and the visual arts are all platforms being promoted to celebrate the work and life of disabled and deaf artists in the build up to the London Olympics.

London commissions

Thirteen new commissions across the UK see two London companies being funded.

Emerging disabled choreographers, Marc Brew and Claire Cunningham, will create a large-scale dance piece for disabled and non-disabled dancers.

Working for Candoco Dance Company, Marc Brew said: “This ambitious new work will explore the physicality of dance and music.”

The work will be performed in 2012 and involve an international cast with dancers from Brazil and China to link the past, current and future Olympic and Paralympic host nations.

Ground-breaking

With over £820,000 being awarded, the funding and scale of the project is unprecedented.

The Unlimited programme – which has a total fund of £3 million principally funded by the National Lottery through the Olympic Lottery Distributor and is delivered in partnership between London 2012, Arts Council England and the British Council – forms the largest project of its kind.

Ruth Mackenzie, Cultural Olympiad Director, said: “This commission is about world-class artists creating brilliant work which will change perceptions of the work of disabled and deaf artists.”

The Mayor of London Boris Johnson said: “I want London to be at the forefront of disability arts as well as sporting participation, so I’m really pleased to see two London companies get recognition for their striking work.”

A new text service has been set up to help deaf people on Teesside access health services.

The pilot project enables them to contact their GP directly rather than relying on family or friends ring up to make an appointment.

It is being run by NHS Tees at surgeries in Middlesbrough and Redcar.

Staff at participation practices are also being given deaf awareness-raising sessions the make them more aware of people’s needs.

Gill Marshall, from Middlesbrough’s Deaf Centre, said: “Deaf people need to be able to contact the NHS independently rather than rely on family or friends and we welcome this initiative to promote independence.”