If my team’s research on ME is rejected, the patients will suffer | Peter White

Chronic fatigue syndrome – sometimes called ME (myalgic encephalomyelitis) – is a sad tale for everyone involved. It is a debilitating illness that affects about 250,000 children and adults in the UK alone, wrecking lives as people are unable to hold down a job and are sometimes left bed-bound for years on end.

Unfortunately these patients have not been treated well – their illness is often dismissed or belittled, leading to much anger, misinformation and argument. There are claims of foul play, with issues over freedom of information and sharing of trial data; this week it was claimed that sexism is part of the reason those with ME struggle to get the proper treatment. My colleagues, Professors Trudie Chalder and Michael Sharpe, and I have spent our careers trying to improve care for patients with CFS/ME. At the heart of this story is the Pace trial we have been conducting since 2005.

For many years Nice (the National Institute for Health and Care Excellence, which oversees healthcare evidence) recommended just two treatments – graded exercise therapy (GET) and cognitive behavioural therapy (CBT) – because it had the best evidence that these therapies worked. However, many patients were not using them, following instead a self-guided treatment called “pacing”: listening to the messages from their bodies and pacing themselves – trying not to do too much, wary of pushing themselves to a point where they might make the illness worse. The idea of doing exercise therapy was scary for some patients, worried that over-exertion would exacerbate their ill-health. The idea that CBT, a talking treatment, might help, raised fears that the illness was regarded as “merely psychological”, or even “all in the mind”.

With so much uncertainty and fear among patients, we wanted to find out which of these treatments worked best and whether they were safe. So we ran a large trial with 640 patients that would seek to replicate earlier studies, but on a much bigger scale. All those who took part were given specialist care and randomly allocated to also receive either pacing therapy, CBT, GET, or nothing extra. We had involvement from CFS/ME community, and the research was overseen by independent committees looking at data, safety and how the trial was run.

The results of our study, published in The Lancet in 2011, were clear – those patients given CBT or GET experienced significantly greater improvements in both symptoms and ability to do things, compared with either pacing therapy or specialist medical care alone. Not only were CBT and GET more effective: crucially, they were just as safe as the other treatments when done correctly.

In short, CBT and GET are safe, can definitely help some people and are more effective than other treatments

Our results confirmed the earlier smaller trials, and strengthened the evidence upon which the recommendations of Nice were based. Added to this, a recent Cochrane review (a summary of all the evidence, and considered the gold standard in medical research) also concluded that exercise is a safe and effective treatment. In short, CBT and GET are safe, can definitely help some people and are more effective than other treatments: but, as with all treatments in medicine, they cannot help everyone.

From here on this should have become a happier story. However, some of the ensuing newspaper headlines – such as “Got ME? Just get out and exercise, say scientists” – gave the misleading impression that patients just needed to pull themselves together, or even that they were making it all up. In our clinics we had seen far too much suffering to ever think this illness could be dismissed in this way.

Our research, and that of our colleagues in this field, has attracted its fair share of criticism. Some campaigners have even called for the research to be stopped, the findings retracted, and CBT and GET abandoned completely as they cause harm. One recent focus of criticism has been whether CBT and GET can actually bring about recovery or remission from the illness, not just reduce the symptoms. And by recovery we mean recovery from a patient’s present episode of illness – which is not necessarily the same as being cured, as someone might fall ill again.

To address this we did another test on the data, and found that 22% of people could be considered as recovered with either CBT or GET. Though not a large proportion it was about three times more than the recovery rates achieved by the other two treatments. Other studies showed similar proportions recovering after CBT.

In the latest step in this saga, a blog that hasn’t gone through the rigours of scientific peer-review, or being published in a journal claims that CBT and GET are not as effective as we reported. The authors got their figures by tweaks such as increasing the pass-grade for what counted as recovery, and excluding patients who had reported themselves as “much better”.

Whichever way the data is viewed, patients get better results from CBT and GET – both confirmed as safe – than they do from pacing or medical care alone.

This whole affair is perhaps saddest for the patients themselves, whose suffering has been neglected for far too long. However, there is hope. First, the important message for patients is that it is possible to get treatment that will help them improve and for some to recover. Second, we agree with campaigners that we need more research into the causes and treatments of CFS/ME. However, if their campaign puts people off trying CBT and GET, it will be the patients themselves who will suffer the most.

If my team’s research on ME is rejected, the patients will suffer | Peter White

Chelsea Manager Jose Mourinho Displays Why Teams Should not Employ Medical professionals

[unable to retrieve total-text content material]

If Chelsea club physician Eva Carneiro had not tended to the player when the match official called for healthcare attention, beyond something about simple human decency, she would have violated the simple ethics and responsibility of the healthcare occupation.

Chelsea Manager Jose Mourinho Displays Why Teams Should not Employ Medical professionals

Afghan Taliban bans polio vaccination teams from southern Helmand

An Afghan health worker administers polio vaccine drops to a child. Photograph: AFP/Getty Images

The Afghan Taliban has banned polio vaccination teams from southern Helmand province because it suspects them of spying for the government at a time of heavy clashes with government forces, the insurgent group said in a statement on its website.

The announcement is a worrying development, because although Taliban groups across the border in Pakistan have attacked and killed polio vaccinators for years, their Afghan counterparts have mostly supported, or at least tolerated, international efforts to wipe out the disease.

The last time polio vaccinators were blocked from part of Afghanistan, the insurgent group denied any role and said it supported efforts to stop the disease.

Afghanistan is one of just three countries, along with Pakistan and Nigeria, where polio is still endemic. There has been a rise in cases this year, with seven reported so far compared with just three for the same period of 2013, according to the Global Polio Eradication Initiative.

The group said Helmand has been off limits to vaccinators since February, but did not give a reason. The southern province has seen fierce fighting between insurgent and government forces in recent weeks, and the Taliban’s statement was the first indication it had chased out polio eradication teams.

“We have stopped vaccination in Helmand for the moment,” the Taliban said in a statement posted on its website this week. “The vaccinators were also collecting information about the Taliban and Taliban commanders, they were spying.”

The statement said they had asked UN officials for talks but received no response; the UN’s humanitarian arm declined to comment when asked about the ban.

Health workers often negotiate access to difficult areas through village elders, and most Afghans are keen to protect their children from a disease which can kill or paralyse. The Taliban’s accusation that vaccinators were working as spies is a worrying new sign of hostility to efforts to wipe out the disease.

But there have for years been fears that the Pakistani Taliban’s opposition to polio vaccination campaigns, which militant leaders have banned at least three times since 2012, could influence Afghan groups.

The CIA’s decision to set up a fake vaccination programme as part of its hunt for Osama bin Laden fuelled militant suspicion of the global project to eradicate polio. The White House has since promised that the US will never again use vaccination programmes as a cover for spying.

Most polio cases in Afghanistan are believed to be the result of infections brought across the Pakistani border, but Afghans are still vulnerable because in some areas only two-thirds of children are immunised.

Afghan Taliban bans polio vaccination teams from southern Helmand

Afghan Taliban bans polio vaccination teams from southern Helmand

An Afghan health worker administers polio vaccine drops to a child. Photograph: AFP/Getty Images

The Afghan Taliban has banned polio vaccination teams from southern Helmand province because it suspects them of spying for the government at a time of heavy clashes with government forces, the insurgent group said in a statement on its website.

The announcement is a worrying development, because although Taliban groups across the border in Pakistan have attacked and killed polio vaccinators for years, their Afghan counterparts have mostly supported, or at least tolerated, international efforts to wipe out the disease.

The last time polio vaccinators were blocked from part of Afghanistan, the insurgent group denied any role and said it supported efforts to stop the disease.

Afghanistan is one of just three countries, along with Pakistan and Nigeria, where polio is still endemic. There has been a rise in cases this year, with seven reported so far compared with just three for the same period of 2013, according to the Global Polio Eradication Initiative.

The group said Helmand has been off limits to vaccinators since February, but did not give a reason. The southern province has seen fierce fighting between insurgent and government forces in recent weeks, and the Taliban’s statement was the first indication it had chased out polio eradication teams.

“We have stopped vaccination in Helmand for the moment,” the Taliban said in a statement posted on its website this week. “The vaccinators were also collecting information about the Taliban and Taliban commanders, they were spying.”

The statement said they had asked UN officials for talks but received no response; the UN’s humanitarian arm declined to comment when asked about the ban.

Health workers often negotiate access to difficult areas through village elders, and most Afghans are keen to protect their children from a disease which can kill or paralyse. The Taliban’s accusation that vaccinators were working as spies is a worrying new sign of hostility to efforts to wipe out the disease.

But there have for years been fears that the Pakistani Taliban’s opposition to polio vaccination campaigns, which militant leaders have banned at least three times since 2012, could influence Afghan groups.

The CIA’s decision to set up a fake vaccination programme as part of its hunt for Osama bin Laden fuelled militant suspicion of the global project to eradicate polio. The White House has since promised that the US will never again use vaccination programmes as a cover for spying.

Most polio cases in Afghanistan are believed to be the result of infections brought across the Pakistani border, but Afghans are still vulnerable because in some areas only two-thirds of children are immunised.

Afghan Taliban bans polio vaccination teams from southern Helmand

Psychiatric help teams enhance patient care and conserve hospitals hundreds of thousands | Sarah Whitehead

Vicky Mason, 69, cares for her 94-yr-outdated mom, Jane, who was diagnosed with Parkinson’s condition a decade ago. In current many years, Jane has begun to present indications of dementia and delirium. “She has been deteriorating over the previous couple of years. She nonetheless understands who we are, but her memory is fading,” says Mason.

But a project to offer specialist psychiatric assistance to dementia sufferers although they are in hospital has the two stabilised Jane’s cognitive skills and enhanced the way in which her Parkinson’s is taken care of. On noticing a adjust in behaviour, the doctors treating Mason’s mum on the Parkinson’s ward in Heartlands hospital, Birmingham, referred her to the project’s speedy evaluation interface and discharge (Raid) team based in the hospital, for fast expert psychiatric support.

“The mental health teams were capable to give medicine to quit her from hallucinating and also provide assistance to help her deal with dementia – she is now capable to hold a appropriate conversation,” says Mason. The diagnosis of significant delirium also altered the clinical therapy Jane obtained, as some of her medicine for Parkinson’s would induce nightmares.

The undertaking was very first piloted in December 2009 by Birmingham and Solihull Psychological Well being NHS Basis Believe in in Birmingham City hospital. The aim was to assess the effect of on-website psychiatric care in acute hospitals, right after analysis recommended that much more than a quarter of sufferers in common hospitals had a psychological sickness in addition to their physical sickness. Any medical professional or nurse can refer patients to the Raid staff for evaluation.The team aims to assess patients referred by A&ampE inside of 1 hour, with a 24-hour target for those already admitted to hospital wards. When a diagnosis has been produced, individuals are either transferred to the out-patient clinic in the hospital or linked to neighborhood community psychological well being services.

The project proved so productive, all five acute hospitals in Birmingham and Solihull, as well as acute hospitals in Telford and Shrewsbury also introduced a Raid services, whilst the method has been defined “ideal practice” in the Joint Commissioning Panel for Psychological Health’s 2012 advice on commissioning mental well being companies. And interest in the task is growing, following final year’s report by the Royal University of Doctors, which warned that common hospitals are on the brink of collapsing under the mental well being issues of an more and more ageing population – similar solutions are becoming designed in Manchester and Wigan.

George Tadros, a advisor psychiatrist at Heartlands, which introduced its Raid group in 2012, says the undertaking has enhanced diagnosis and pace of treatment for individuals who have mental health situations. “Most acute hospitals in Britain are not equipped to deal with the vast sum of psychological well being disorders that come by way of their doors,” he says. “Just before we introduced the Raid team in City hospital, the mental well being signs and symptoms shown by numerous sufferers had been either not identified or doctors would have to speak to the liaison psychiatry team outside the hospital and it could get days or even weeks for the patient to be witnessed and by then the issue could have acquired significantly worse.”

The Raid group has expert psychiatrists, social employees and mental wellness nurses with knowledge in previous age, doing work age and postnatal psychological health and substance misuse, and it supplies typical instruction for acute hospital staff in the diagnosis of delirium, depression and dementia.

Tadros says the venture has also had wider positive aspects for the hospital: enhanced waiting times and diminished repeat admissions. “In the past, we have seen patients who repeatedly come to A&ampE with recurring difficulties, and in a lot of cases instant psychiatric support would have prevented this. 1 typical example is individuals who come with panic attacks, which might be presented as breathing issues. When the bodily problem is handled you do an ECG and then send them away. But the cause has not been addressed and so they come back.”

Analysis by Paul Kingston, director of the Centre for Ageing Studies at the University of Chester, which assessed the effect of the pilot Raid task, supports his view. Kingston’s report, published last year, identified that Birmingham City hospital, which has 600 beds, saved 43-64 beds per day by avoiding readmissions, although a separate 2013 audit by the London School of Economics estimated that the venture saved the hospital £3.5m.

“Occasionally physical issues cause mental overall health situations and other times mental well being situations are manifest by means of bodily signs and symptoms. For this cause psychiatric support is vital in all acute hospitals,” says Kingston. “Most of the diagnostics that take spot with mental overall health do so by means of conversation. You can’t see depression in a blood test or an x-ray. A lot of of the men and women coming into acute hospitals are, for various causes, unable to communicate a psychiatric difficulty to a physician or may possibly not realise they have one particular. So unless there is expert support they usually go unnoticed.”

For Mason, the task has also improved her own situation. “My mother now receives weekly help from local local community groups while continuing her Parkinson’s remedy. She is much less distressed now she has regular support and this has taken a massive burden off me.”

Some names have been altered

Psychiatric help teams enhance patient care and conserve hospitals hundreds of thousands | Sarah Whitehead

$1.8 Billion For The L.A. Clippers? That"s 3.27 Occasions A lot more Than Any Other NBA Team, And 120 Times The Team"s Working Revenue

Two swift ideas on the rumor that ex-Microsoft CEO Steve Ballmer is ready to pay up to $ one.8 Billion to get the Clippers.

1st, the NBA is a shared monopoly, which permits group crew owners to charge unusually large charges for the sale of their franchises as prolonged as no other crew owner is looking to promote at the exact same time.

Second, no other NBA proprietor is actively seeking to sell his staff correct now, which gives Donald Sterling a true monopoly in excess of the marketplace for buying an NBA franchise.

Based mostly on these variables, the stars purportedly have aligned for Donald Sterling to have obtained an offer you for the Clippers that is too great for even Montgomery Burns to have refused.

Presuming today’s rumors are correct, let’s put these numbers in viewpoint.

Sterling’s sale to Steve Ballmer would pay out him 3.27 times more for his franchise than the earlier NBA substantial of $ 550 million — paid for the Milwaukee Bucks back in April.  This is not a slight premium over previous NBA staff income.  It turns all previous valuations on their head.

In addition, the rumored $ 1.8 Billion sale price tag for the Clippers represents a worth of 14.06 times the team’s annual revenues and 120 times the team’s working revenue primarily based on values presented in a most recent FORBES report about NBA teams (the report that listed the Clippers’ revenues at $ 128. million and their operating earnings at $ 15. million).

This kind of ratios are astounding not only for a lot of conventional companies, but also for most sports franchise income.

Steve Ballmer. (Photo credit score: Wikipedia)

While territory rights to the Los Angeles market would on one hand appear to make the Clippers uniquely useful, the fact that the Clippers shares these NBA territory rights with the Lakers as effectively as competes to limited extent towards the NHL’s L.A. Kings would have seemed to have offset some of the market place benefits.

In addition, one would have expected the “goodwill” related with the buy of the Clippers to have been tiny if any.  Shedding methods and purportedly racist speech do not normally increase of business’s brand equity.

Prior to Sterling’s racist rant, 1 could have reasonably expected the Clippers franchise to have fetched Donald Sterling amongst $ 500 and $ 800 Million in an average sellers industry.

$ one.eight Billion?  Perhaps, V. Stiviano actually is the best salesperson of all time.

________________________________

Marc Edelman is an Associate Professor of Law at the City University of New York’s Baruch University, Zicklin School of Enterprise, where he has published a lot more than 25 law overview articles on sports activities law issues.  His latest articles or blog posts include “A Short Treatise on Amateurism and Antitrust Law” and “Are Commissioner Suspensions Actually Any Various from Illegal Group Boycotts.”

Steve Ballmer is rumored to have manufactured $ 1.8 Billion bid to get the L.A. Clippers (Photo credit: Wikipedia)

$1.8 Billion For The L.A. Clippers? That"s 3.27 Occasions A lot more Than Any Other NBA Team, And 120 Times The Team"s Working Revenue

Cancer survivor teams up with stem cell donor in bid for marathon glory

Johnny Pearson, who had cancer two years in the past, will run the London Marathon with each other with his stem cell donor, Sean Hagan. Photograph: Anthony Nolan charity

At the end of his cancer therapy two years in the past, Johnny Pearson could barely stroll.

As he stood up to leave hospital, his leg muscle tissues have been so weak that he fell to the ground. The 44-yr-previous, who lives in Harrogate, North Yorkshire, had undergone a number of rounds of chemotherapy and a stem cell transplant. He knew he was fortunate that the Anthony Nolan charity had identified him a stem cell donor on their register (“otherwise my survival odds had been nil”) but recovering his power was hard.

Prior to diagnosis Pearson, who had lately began his personal wine organization, was quite energetic, playing cricket, golf and squash he employed to ski competitively and ran the Great North Run – even though at the finish line he “vowed never to do a marathon”. Now he’s gone back on his word, and will be taking part in the London Marathon on Sunday, along with his running partner, Sean Hagan, 23, an engineer from Cumbria.

“There’s no way I could do it with no him,” Pearson says. He is not exaggerating – he would not be alive without having Hagan, who takes place to be the guy who donated his stem cells two years ago.

Touched by the altruism of this complete stranger, Pearson wrote a thank you card to his donor following his transplant in 2012, starting a series of letters between the two of them. They exchanged information of their lives, all the whilst remaining anonymous (donors and recipients are only permitted to share their identities right after two many years). Final yr Pearson identified out that Anthony Nolan was the official charity for the 2014 marathon. “Dear friend,” he wrote to his donor. “In a second of sheer madness, I have signed up to run it. Perhaps you could do it with me? No pressure!!” Hagan was unfazed. The pair had by no means even met, but he didn’t truly feel like it was an provide he could refuse after all, his recipient had been on the verge of death and was still determined to run 26 miles and raise income for the charity that had supplied him a second opportunity at lifestyle. “Suppose I ideal get training!” Sean replied in his next letter.

It truly is the first time a donor and a recipient will run the London Marathon with each other. The two men only met a couple of months in the past when they were ultimately permitted to reveal their identities. “There was not any awkwardness,” Hagan says, “we’d been writing for so lengthy we had been currently pals. I felt we were friends from the minute I discovered out I was a match.” They toasted the two-year milestone with a handful of beers, before obtaining down to company – discussing marathon techniques and sharing ideas.

The strategy is to begin off gently, combining 15-minute bursts of running with one-minute pace-walking intervals, and pauses to refuel. The two guys are a tiny nervous – Hagan has struggled to find time for education with his twelve-hour evening shifts at a submarine business, and as I talk to Pearson, he’s sat with one leg plunged into a bucket of ice, getting aggravated an old cricket damage in his calf muscle. But they are assured it will be all appropriate on the day, with their families cheering them on, and the BBC following their progress.

“There’s no backing out now,” says Hagan, “we have done a number of interviews, there is a lot of pressure.” He’s a bit shy, satisfied that the media interest has currently sparked a rise in the variety of prospective donors signing up to the register, but embarrassed by any praise or suggestion that he’s a hero. “Donating was the best thing I’ve ever completed. I just hope by running we inspire far more people to indicator up.”

Together the men have presently raised all around £12,000 for Anthony Nolan in marathon sponsorship and other fundraising, like a ball organised by Hagan’s sisters.

Pearson says he’s fallen in enjoy with running now, addicted to the “rush of endorphins” he received from a 20-mile session last week. “The medical doctors feel I am crazy for undertaking it. All my organs have taken a beating, my lungs have been impacted, I had pneumonia at one particular point. At the time of my transplant I was advised there was a 50% opportunity I would not survive. But I’m extremely stubborn, when I get an notion into my head.” Hagan expects to be spurred on by fellow runners on Sunday. “I’ve noticed individuals with artificial limbs running it. And with Johnny next to me, realizing what he is been via, which is all the inspiration I need to have.”

Cancer survivor teams up with stem cell donor in bid for marathon glory

Rare condition patients require integrated care from specialists and nearby teams

Earlier this month, senior NHS official Dr Martin McShane raised the pressing issue of how to improve and sustain principal care for the increasing variety of individuals with one or more complex, long-phrase overall health conditions in the Uk. With an ageing population in thoughts, McShane recommended that, with further coaching, some GPs and their practices could specialise in “complicated care”. He believes these new practices could assist to bridge gaps between specialised, hospital-primarily based solutions and ongoing healthcare closer to residence – for people with prolonged-term health situations such as diabetes and dementia.

These proposals have implications for the three.five million men and women in the Uk living with rare ailments. Any substantial investment and remodelling of care for these with lengthy-term conditions must consider the requirements of this patient group. McShane’s suggestion for specialised practices could be a solution for individuals with circumstances such as heart disease or Alzheimer’s, but is most likely to current challenges when applied to patients with rare, complex situations.

The lack of a sustainable and efficient approach to treating people with complex demands in the neighborhood, is an concern that is acquainted to several of the 60,000 men and women in England with muscular dystrophy and other uncommon neuromuscular conditions. The Muscular Dystrophy Campaign routinely hears from men and women who fall foul of the gap amongst the extremely specialised, skilled, hospital-primarily based teams they may see just a few times a year, and the day-to-day basic care they obtain from regional GPs, nurses and physiotherapists.

In some locations, exceptional muscle clinics and other regional centres of knowledge have been designed. Centres, such as those found at trusts in Newcastle, Leeds, Liverpool, Oxford and London, supply a regional hub for sufferers with neuromuscular problems and help major care pros doing work with them. Even so, their geographical spread is uneven and there are also handful of essential workers, this kind of as neuromuscular care advisers and expert nurses, in posts linking specialised and community services.

As with so numerous areas inside of the NHS, we need to have to see investment in these specialised centres to offer neighborhood-primarily based health experts with assistance by means of skills and suggestions. Nevertheless, in this case, there is certainly a strong financial argument for rebalancing present funding to improve providers.

Extreme respiratory infections, falls and cardiac issues all accompany forms of muscular dystrophy. Sadly, frequent and traumatic wellness emergencies are a fact of lifestyle for many households residing with the circumstances. Wellness specialists based locally, with complete expertise of medical background, a thorough understanding of a distinct issue and a direct line to regional specialists, can each avert crises and be available to advise emergency teams need to 1 arise.

NHS information signifies that around 40% of emergency admissions to hospital for this patient group could have been averted through preventative care – monitoring, early intervention and physiotherapy. This quantities to possible savings of up to £32m a year on emergency care. It appears unlikely that ‘complex care’ practices have a element to perform right here. It is not workable or useful to have a situation exactly where a severely disabled patient is forced to travel long distance to see a GP who, even though specialising in complicated care, is even now unlikely to come in get in touch with with a significant variety of patients with the identical unusual issue.

Some areas have benefited from investment in specialist centres and teams to improve ongoing care for those with neuromuscular circumstances. Following the crucial Walton Report in 2009, the quantity of professional neuromuscular care advisers and nurses in the Uk is increasing. Numerous operate each right with patients in the community by linking in with GP practices and clinics, and with neuromuscular consultants, professional physiotherapists and respiratory teams via professional expert centres. They are well positioned to share skills on how distinct conditions progress, and support evolve understanding of effective therapies with GPs and other overall health professionals delivering principal care.

The Muscular Dystrophy Campaign has also not too long ago acquired funding from the Department of Health to run its Bridging the Gap nationwide project. This is targeted on new regional neuromuscular forums and brings collectively people delivering main and expert care. The task will also work to enhance understanding of neuromuscular conditions amongst primary care practitioners by building on the web instruction modules for GPs and an on-line map of professional clinics and neighborhood companies.

McShane recognises the want for more informed experts functioning in principal care with the increasing number of men and women with prolonged-phrase conditions. Nevertheless, ought to proposals for complicated care practices move forward, this are not able to be at the detriment of investment in specialist experts at specialised centres functioning with individuals with unusual, extended-phrase problems. Their skills and support is important in making sure local community-based mostly teams have the expertise and expertise they want to defend well being and improve high quality of life.

Robert Meadowcroft is chief executive of the Muscular Dystrophy Campaign

This write-up is published by Guardian Professional. Join the Healthcare Professionals Network to obtain typical emails and unique gives.

Rare condition patients require integrated care from specialists and nearby teams