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News and Opinions about MS, Health & Disability

Falls – the good, the bad, and the ……

Falls are a fact of life for people with multiple sclerosis or other disability that includes mobility and balance problems. But, those of us who take the tumbles know they are not all the same.

We divide them into bad falls and good falls. So, what is a “good” fall? How can any fall be good?

Well, from personal experience, I know that some falls can be thought of as good. I will try and explain.

falls First of all, there is the matter of injury. Any fall that incurs no more than bruises and scratches has got to be thought of as nothing to worry about. I have learned to relax and roll

Injuries, though, are not the only factor. Here I can only speak with my knowledge as a person with MS. I know that people without disabilities fall sometimes, and MS is not behind all my unscheduled meetings with the floor. After all, anyone can slip or trip.

Those of us who have MS know full well what can be blamed on the disease. In my own case, muscle weakness in my left leg can lead to my left knee giving way without warning. At other times, I cannot maintain my balance or am just too tired to move or stand up any longer.

These falls are all attributed to MS as it affects me. You may have other symptoms and effects. We all know, however, that every fall is bad if it is connected to MS.

However, other unplanned descents can be totally unconnected with the disability and so are “good” falls. These can include slips, trips, misjudging distances and so on.

Not all falls can be blamed on MS

Some recent mishaps in my life have included misjudging the distance to an ottoman and only half sitting on it, ending on the floor. Another time, I turned over in bed but was too close to the edge and so found the floor again. Both of these left me completely unhurt and helpless with laughter. Neither were linked to MS.

Another risk you have to look out for is moving obstacles, namely pets. In my case, we have three cats and two are good at keeping out of my way but the eldest (19½ years) doesn’t. Indeed, she manages to get right in the way and then stop – as though daring me to get past. So far, no accidents there but I have to stay alert.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Clinical Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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People with MS in the military have higher risk of death

Personnel of UK armed forces who have multiple sclerosis are at significantly higher risk of dying than people in other occupations. This is according to a new study.

militaryThe study titled “Mortality from multiple sclerosis in British military personnel” was published in the journal Occupational Medicine

Researchers from the University of Southampton, England, had already studied mortality rates by occupation by checking records of residents of England and Wales. They saw the death rate among MS patients in the armed forces was considerably higher than in other professions.

Now, we with MS are fully aware that, while the cause of the disease is unknown, it has genetic, environmental, and virus factors. But researchers wanted to find out why such a high proportion of people with MS in the military die, and the causes.

Key findings

I am not going to go into the full details, as you can read they whole study – see link above. Instead, let me guide you through some of its findings:

  • MS-related mortality rate among military people was significantly higher than in other professions. That rate was also significantly higher than the rate from all motor neuron diseases in the armed forces.
  • Military people did not have a higher MS-related death rate when the team divided those in the study into three social classes. Nor when they compared the armed forces mortality rate to those of similar occupations, such as police and fire services.
  • The consistency of the findings, together with the high statistical significance observed, indicates that the results were not due to simple chance or a problem with the study method.
  • Researchers speculated that the higher military death rate could stem from the proximity in which military personnel live and work, which could facilitate the transmission of infections that have the potential to cause MS.
  • The research team wrote: “Our findings suggest that the persistently high proportion of deaths from MS in British military personnel is unlikely to be explained by chance, bias or confounding. The alternative possibility that there is an underlying occupational hazard is plausible. For example, the close proximity in which military recruits live and work might facilitate the transmission of one or more infections that lead to MS.”
  • The results conflicted with a study that analyzed hospital admissions due to MS in a population of former military personnel. That reported no increased incidence of MS-related admissions in former military people, compared with non-military controls. Since such cohort studies are less prone to bias, the Southampton team called for more research on the topic.

Military MS in summary

Researchers said: “Findings suggest the high proportional mortality from MS in British military personnel is unlikely to occur by chance. Nor as an artefact of the method of investigation. However, the only military cohort study with published results on MS does not support an increased risk. It would be useful to analyze data on MS from other military cohorts, to check for evidence of a hazard.”

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Clinical Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Cure for multiple sclerosis: Are we close?

I keep reading about potential cures for multiple sclerosis but how lose are we? Let us take a look at the situation.

Researchers and the medical profession already know that MS is a complicated disease with numerous symptoms. Also, they know that that it is not completely understood. That being the case, it is difficult to see how a cure may be imminent.

But let’s look at the current situation with an open mind.

Recently approved

On the drug front, there are numerous disease-modifying therapies (DMTs) that are used to slow the course of the disease. The US Food and Drug Administration (FDA) has approved 15 such DMTs mostly for use in treating people with relapsing MS.

The FDA most recently approved ocrelizumab Ocrevus (brand name Ocrevus), at the end of March. This has been given the green light for treating both relapsing and primary progressive forms of the illness.

Ocrelizumab is an immunosuppressant that targets B cells, believed to have a key part in the destruction of myelin.

Patients receiving ocrelizumab also had fewer brain lesions and less loss of brain volume than the placebo group.

What’s ahead

Scientists can take 10 to 15 years to develop new medicines to the stage where they have approval of regulatory authorities to being commercially available. Clinical trials are an important part of his development process.

Some prospective therapies now in the pipeline are:

Laquinimod is an experimental drug in phase III trials for relapsing MS, and phase II

Autologous hematopoietic stem cell transplantation (HSCT or AHSCT) “reboots” the immune system in people with all types of MS. HSCT can halt the progress of the disease but does not repair damage already done.

MD1003 is high-dose biotin. It is being tested in phase III trials for both primary and secondary progressive MS and may promote myelin repair.

Siponimod is being developed for use in SPMS.

This all goes to show that research towards new MS treatments is moving fast. These new therapies include: resistance training, antioxidants, and gut microbes.

But is a cure for MS imminent?

Avures much as I wish it is just around the corner, the answer has to be NO.

DMTs help relieve symptoms, reduce disease progression and so on – but they are not cures. We maybe at a point where we are making significant progress to hope for a breakthrough soon, but nothing more.

It is a shame but I really cannot be any more positive than that.

Speaking personally, I have not yet found a DMT that I would be prepared to take. But that’s my choice, not my recommendation. As there is no cure yet, I am convinced that HSCT is the next best that is currently available.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Clinical Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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MS patients’ cancer risk likely to have been increased by older immunosuppressants, says study

People with multiple sclerosis are more likely to develop cancer if they have used immunosuppressants than if they haven’t, according to a new study. I knew it was right to have a healthy disrespect for certain MS treatments.

The study cites older types of immunosuppressant treatments, less likely to be used today. Also, it indicates that a supposed link between MS and cancer may come from those older types treatments. So, not the disease itself.

The study, “Association between multiple sclerosis, cancer risk, and immunosuppressant treatment: a cohort study”, was published in the journal BMC Neurology. 

Disease-modifying treatments, today, target selected immune system cells, but immunosuppressant drugs are not so choosy. They take out an entire spectrum of immune cells and, researchers discovered, permanently change activity of cancer-causing genes.

Cancer linked to older MS treatments

To conduct the study, University of Palermo, Italy, researchers looked at 531 people with MS who had used the therapies. The research team recruited 531 MS patients who had never been treated with immunosuppressants, as  controls. Researchers compared both groups to people of the same age in the general population.

Key findings were:

  • The researchers found the risk of the immunosuppressant group developing cancer was 11 times higher than untreated patients.
  • Gut cancers, breast cancer, and leukemia were the most common types among these patients.
  • Those who took azathioprine and mitoxantrone were four times more likely to develop cancer than other patients.
  • Patients treated for a longer time were at higher risk than those treated for a short time.
  • MS patients who had never been treated with the older drugs did not have higher cancer rates than the general population.

Researchers say doctors should watch for cancer in patients treated with immunosuppressants.

This new research does not involve any modern MS disease modifying therapies, but it would be wrong for me not to remind you that no drug treatment is without risk of side effects.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other compand products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a whd advocates on mobility and accessibiliies.

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Sensitivity to heat not affected by summer sunshine

heat

As summer continues with temperatures in the 30°s C (high 80°s), the hottest days now seem to be behind us here in the south of Spain. The temperatures peaked at over 100°, so the high 80°s is quite pleasant.

What’s more, the good news is that the hot weather has not caused me any heat sensitivity problems at all. But then, that’s exactly what I expected. And that is because my heat sensitivity is triggered by changes in temperature not consistent heat.

Some people were concerned about heat exhaustion when the learned that Lisa ad I announced we were moving to Spain, two years ago. But after a series of sudden temperature changes experienced in the UK, this is a walk in the park.

Heat in your marriage

Talking of my beloved Lisa, she never ceases to amaze me with her selfless dedication to my wellbeing.

I have heard from so many people with MS who have split up ad divorced when their partners decide that a life as a caregiver isn’t for them. It is so sad.

Lisa has known that I have MS right from the start of our relationship, I never tried to hide it. She agreed to marry me knowing what was in store for us both. Furthermore, her granddad had MS too, so she knew more than most husbands and wives when their spouses are diagnosed as having MS.

Perhaps that is not incredible, perhaps it should be expected but there are many who have found that not to be the case. The “till death do us part” of the marriage vows appears to have been lost on their partners.

Do you have the loving support of your spouse or have you split up? And just how does heat sensitivity affect you, or doesn’t it? Please let me know.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Sunscreen compounds help suppress MS symptoms

Vitamin D, whether gained naturally with the help of sunshine or from a supplement, is widely seen as being beneficial if you have MS. Certainly, I have experienced a benefit from taking tablets on a daily basis.

Now, though, scientists are saying that sunscreen, that helps block the sun’s rays, can help suppress symptoms of the disease. At least, two ingredients of the sunscreen do the suppressing – and it was proved to work in mice.

sunscreen

Dr Hector DeLuca,, research team leader.

The ingredients are salate derivatives, which are nonsteroidal anti-inflammatory drugs.

University of Wisconsin, Madison, researchers’ study was published their study in Proceedings of the National Academy of Sciences. It was titled “Salate derivatives found in sunscreens block experimental autoimmune encephalomyelitis in mice.”

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Symptoms of MS can show years before disease itself

For once, I am pleased to know that I am not alone. Researchers in Canada report that people with multiple sclerosis can show symptoms of something wrong five years before disease onset. This is much earlier than previously thought, but just not as early as my own experience.

Let me explain. My first indication that all was not well was in the mid-1980s and doctors were concerned enough to order a lumbar puncture (spinal tap). However, for whatever reason, the result was negative. Doctors said don’t worry, it’s nothing serious.

Almost 20 years later, following further symptoms and new concerns of mine, I had more tests.  These showed I had MS, and the neurologist told me that he had gone through my medical records and found evidence of MS more than 25 years earlier. So, it looks like the 1980s’ lumbar puncture was a false negative.

The Canadian research, published in Lancet Neurology, and reviewed by Science Daily, is a first step toward identifying red flags. These should help doctors screen for the disease and start interventions earlier.

symptoms

Dr Helen Tremlett of the University of British Columbia.

“Proving that people with multiple sclerosis have already changed their behaviour in the five years before even the earliest medical recognition of the condition is very important. It means we have to look beyond those five years to understand how it is caused,” said Dr Helen Tremlett. She is senior author of the study and an associate professor for neurology in the department of medicine at the Djavad Mowafaghian Centre for Brain Health.

Symptoms well before MS recognized

The researchers examined health records of 14,000 people with multiple sclerosis over a 20-year period and compared them to the health records of 72,000 people without the disease. This study showed there is a phase where people show symptoms before multiple sclerosis is medically recognized.

“There’s something going on here that makes this population of people unique,” said José Wijnands, first author of the manuscript. He is a postdoctoral fellow and a Michael Smith Foundation for Health Research trainee.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Silly season lacks real news stories – whether general or about disabilities

It’s silly season right now. At least, it is in the UK and many other countries. In the US, it is called the slow news season. Elsewhere it can be called cucumber time, or another such term.

The reason, of course, is that at this time of year news is harder to come by. Yes, there are still things going on but in the northern hemisphere parliaments and congresses have long summer breaks. So do courts. South of the equator, the season tends to refer to a period surrounding the Christmas and New Year holidays. Remember, December and January are summer months there.

silly seasonSilly season is a term with which I am quite familiar, having spent my career in journalism. I know full well about the scarcity of real news during the summer.

And that’s why we see frivolous news items in the Press that would not be likely otherwise. Frivolous items that give rise to the term ‘silly season’.

It’s true, too, for news about disabilities. Whatever, and however, a disability affects us – developments are scarce during these months. Changes to benefits? Sorry, no, the government is on holiday.

The independent organization Benefits and Work publishes a regular newsletter, but not during the silly season. In its last edition on July 17, it said: “This is our last newsletter, and money-off coupon, until Friday September 6. Parliament is about to go into recess and will return on September 5, briefly, before the conference season begins.

Silly season = slow news

“That should mean that we are spared any more new initiatives or bogus consultations before the Autumn and gives us all a chance to recharge our batteries. But, if anything dramatic does occur relating to benefits, we’ll bring out a special edition.”

In the UK, parliament has not met since July 20 and returns on September 5. In the US, congress finished one week later, on July 28, but also restarts on September 5.

Any news about developments in new drugs and treatment of diseases such as multiple sclerosis? No, not at all. The last news update on the website of the MS Society was posted on June 30. In the USA, the National MS Society last posted a news item on August 8 – and that wasn’t about MS. It was about the congress summer holiday.

And don’t expect to take your benefits claim to court either. The UK High Court’s summer break lasts from August 1 to the beginning of October.

Oh well, it looks as though the news media will, once again, have to resort to the frivolous.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

 

 

 

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Blood test can shorten MS diagnosis to 7 days

IQuity has launched1 an RNA-based2 blood test that, it says, can confirm a diagnosis of multiple sclerosis in seven days.

This is much faster than using conventional diagnostic methods. These usually involve a series of visits to clinics, various tests and can many months to complete. Sometimes even longer.

The new test is called IsolateMS and is 90% accurate.

People have long been concerned about the time conventional diagnosis takes. This faster method, with results in just seven days, will allow doctors to start treatment of MS patients earlier than before. Earlier treatment can help slow the illness and allow better

isolatems

IQuity CEO Dr Chase Spurlock.

IQuity chief executive officer Dr Chase Spurlock said: “The 90% accuracy rate of IsolateMS should give providers and patients a great deal of confidence in their results.

IsolateMS elimates period of uncertainty

“This test augments existing clinical practice and eliminates the period of uncertainty that can accompany an MS diagnosis. IsolateMS allows patients and providers to begin discussing next steps immediately.”

When I think back to the time doctors diagnosed MS in me, I remember it was quite fast. Well, fast in conventional terms – only three months. But, wow, seven days would have been great. And I would definitely have swapped that process for a simple blood test.

Added to that, the diagnosis might have been made years earlier when symptoms, later said to be MS, went unrecognized.

 The company has not confirmed its plans to launch IsolateMS outside the US.

1 IsolateMS has been launched in the USA but, initially, is not available in six states. These are: California, Florida, Maryland, Pennsylvania, Rhode Island and New York. IQuity will update this list as these licenses are obtained. 

2 Ribonucleic acid (RNA) is a polymeric molecule essential in various biological roles in coding, decoding, regulation, and expression of genes. RNA and DNA are nucleic acids, and, along with lipids, proteins and carbohydrates, constitute the four major macromolecules essential for all known forms of life.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Disabled employees: What does Brexit mean?

As representatives of the UK and the European Union (EU) negotiate about Brexit, our attention is focused on disability. Now, the spotlight is on how disabled employees may be affected by the country’s withdrawal from the EU.

The Business Disability Forum says that disabled employees, including people with MS, potentially have a lot to lose.

Disabled employees

Diane Lightfoot, Business Disability Forum chief executive.

The forum is a not-for-profit member organisation, headed by chief executive Diane Lightfoot. It aims to makes it easier and more rewarding to do business with, and employ, disabled people.

It warns: “The legislative impact of Brexit – and what it means for disabled employees and customers – is an area of concern. There is real worry that recent progress in the EU around access and equal treatment may be lost, or that standards of accessibility may slip.

“But fair treatment of disabled people has always been about more than just legal compliance. From a business point of view, to harness the full potential of disabled workers, to reduce staff turnover and absence, and to access the £212bn purple pound means going beyond minimum legal standards.

Disabled employees overseas

“It means we need to achieve the best outcomes for all people, with or without disabilities. It goes to the core of being businesses that people will wish to support or want to keep working for.”

Additionally, the forum believes that focusing on good practice rather than legal compliance will only become more important if the UK wishes to be a country that looks outward, and does business on the international stage.

“The work we do overseas focuses not on legal compliance but a universal code of practice for doing business with disabled people,” it says.

“Universal values apply to everyone. Principles for treating disabled people fairly, and working with them, are similar to good customer service, good management and good design.

“Even more importantly, working this way means being disability-smart isn’t effort, but attitude – something ingrained in what we do.

“Brexit may generate uncertainty around legislation and legal risks, but this needn’t bear on organisations doing business with disabled people. In the end, being disability-smart is just about aiming for the best outcome for everyone,” the forum says.

ABOUT THE BUSINESS DISABILITY FORUM

The Business Disability Forum says it builds disability-smart organisations to improve business performance by increasing confidence, accessibility, productivity and profitability.

It does this by bringing together business people, disabled opinion leaders and government to understand what needs to change. Disabled people must be treated fairly so they can contribute to business success, to society and to economic growth.

It has more than 20 years’ experience working with public and private sector organisations, formerly as Employers’ Forum on Disability. Members employ almost 20% of the UK workforce and seek to remove barriers between organisations and disabled people. It is a key stakeholder for both business and government, and has contributed to development of meaningful disability discrimination legislation.

Business Disability Forum provides pragmatic support by sharing expertise, giving advice, providing training and facilitating networking opportunities. This helps organisations become fully accessible to disabled customers and employees.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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