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News and Opinions about MS, Health & Disability

US Presidential election: Republican candidate Trump caught in ‘woman with MS was fired’ scandal

Republican US presidential candidate Donald Trump has been caught in a scandal that his campaign chief once sacked a woman with multiple sclerosis.

The American press are giving prominent coverage to the news that Stephen Bannon, Donald Trump’s new campaign CEO, was accused in a 2005 lawsuit of firing an employee, who lives with multiple sclerosis, while she was on maternity leave after the birth of her child.

Although there is no evidence that Trump was in any way involved, the media is having a field day.

Candidate Donald Trump, left, and campaign CEO Stephen Bannon.

Candidate Donald Trump, left, and campaign CEO Stephen Bannon. (Pic: dailynewsbin.com).

The lawsuit was filed on behalf of former employee Julia Panely-Pacetti, who reported to Bannon, against American Vantage Companies, and argued that the firing violated Family and Medical Leave Act protections.

The claim got settled the following year, according to the New York Post, which reported on the lawsuit.

According to the suit: ‘Ms. Julia Panely-Pacetti, a new mother who suffers from Multiple Sclerosis (MS), was terminated by Defendants from her position as head of public relations and corporate marketing because of her sex and her disability.’

The firing occurred ‘while she was on a protected Family and Medical Leave Act (FMLA) maternity leave, even though she had been forced to continue performing her job responsibilities from home throughout her maternity leave.’

A Bannon spokeswoman told British newspaper the Daily Mail that Panely-Pacetti lost her job as part of a broader layoff. She said: “Ms. Panely-Pacetti was not fired but laid off with all the personnel in her entire division during a corporate restructuring where the parent company exited its international sales and marketing business, and shut down its communications department.”

Following Panely-Pacetti’s announcement that she became pregnant, she alleged that Bannon ‘became less available to her on professional matters’ and ‘spoke disparagingly of her pregnancy,’ according to additional details reported by the New York Daily News.

Bannon took over Trump’s campaign with the resignation last month of campaign chairman Paul Manafort, who left amid a flurry of reports about his dealings in Ukraine. Manafort succeeded campaign manager Corey Lewandowski, who guided Trump’s efforts during the primaries.

Bannon has taken leave from the conservative website Breitbart.com to help steer Trump’s campaign.

 

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Help for Anyone Newly Diagnosed with MS

Being diagnosed with MS can be more than a bit of a shock at first. Yes, you finally know what you’ve got, what all those symptoms you’ve having mean, and you have heard what your neurologist told you.

Well, you may have heard, but you didn’t take it in because you weren’t actually listening. The doctor was droning on while you were lost in your own thoughts, your own despair.

helpMultiple what? Sker … what?

You leave the consulting room not knowing much at all, but grasping an information sheet to read at home.

So, once you get the name of the disease sorted out, where can you find more information? Fortunately, most countries have MS charities, or nonprofits, that publish a host of leaflets and pamphlets that can help. As an example, I looked at what is on offer to the newly diagnosed in the U.S.and U.K.

Each country has the luxury of two charities.

Newly Diagnosed with MS in the US

The National Multiple Sclerosis Society (NMSS) offers:

  • Knowledge Is Power (KIP): An educational series for people newly diagnosed with MS or those with a loved one recently diagnosed.

The Multiple Sclerosis Association of America (MSAA) also provides a “Multiple Sclerosis information” (MSi) collection, offering online educational videos, webcasts and webinars. These are easy to access through the MSAA’s website by selecting the topics of interest to you. For individuals who are newly diagnosed, or who are experiencing initial symptoms and have yet to be diagnosed, a portion of these MSi videos and webinars may be particularly helpful. These include:

Newly diagnosed with MS in the UK

On the other side of the Atlantic, the MS Society (MSS) has published the booklet, “Just Diagnosed – an Introduction to MS,” available in English and a number of other languages.

The information is for anyone who either has just been, or is in the process of being, diagnosed with MS.

The MSS website says: “You also could be the partner, relative or friend of someone who’s received this diagnosis. You may be experiencing a huge range of emotions, among them anger, shock, fear or even relief (especially if it has taken some time to be diagnosed).

“It’s likely that you also have hundreds of questions, many of which you don’t know who — or how — to ask. While we can’t promise that we can provide all the answers here, this booklet aims to give you an introduction to MS and to provide the means for you to seek the information and support you need.”

The booklet is also available in audio format.

Alongside the society, the MS Trust (MST) says it can provide as much information as is needed, either at diagnosis or later. It says: “You may feel emotional and probably have lots of questions. The MS Trust can help you.”

The MST also has other information if you’re concerned that your symptoms might be MS, or have been diagnosed with clinically isolated syndrome (CIS).

Here is a list of available information from the MST:

So, if you are newly diagnosed with multiple sclerosis, or are caring for someone who is, remember you are not alone. Fear of  the unknown can be terrible, but there is plenty of information prepared especially for you.

This article, written by me, first appeared on Multiple Sclerosis News Today.

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Ian Franks
Ian Franks is our Chief Columnist and Patient Specialist at Multiple Sclerosis News Today. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist MS, Health & Disability blog at www.50shadesofsun.com. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.
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My Life is My Own, MS Cannot Have It

It is often said that real life mimics television, and one hit TV series certainly reflects the theme: “my life is my own, MS cannot have it.”

During the 1960s, 1967–68 to be exact, an iconic television show ran on Sunday nights called “The Prisoner.” It starred Patrick McGoohan as a British secret agent who, after resigning, was abducted and woke up in a mysterious place known only as The Village.

This series developed what might be described as a cult audience, and I, then a 15-year-old, was a happy member.

There is no need, here, to delve any further into the show’s content, but it seems to me that all of us with multiple sclerosis are living in our own version of The Village. We all awoke one day to the realization that all was not well. We consulted a doctor and, once diagnosed, we were each abducted by multiple sclerosis to become new residents of The Village.

Patrick McGoohan as No 6 driving the Lotus 7 featured in The Prisoner.

Patrick McGoohan as No 6 driving the Lotus 7 featured in The Prisoner.

Viewers of the television series never knew the name of McGoohan’s character — just his number. Everyone in The Village had a number — he was Number 6.

Not that he accepted that. “I am not a number. I am a person,” he yelled at one point, being in a constant rebellious mood and hell-bent on freedom. In the same episode, he said: “I will not be pushed, filed, stamped, indexed, briefed, debriefed, or numbered! My life is my own.”

From the way “Number 6” refused to accept his confinement and was always looking for a way to escape, we could draw a parallel with our confinement by multiple sclerosis and our constant desire to be rid of this disease for good.

What’s more, just as McGoohan’s character reacted so violently against being categorized as a number, so too we don’t want to be defined by this disease. I refuse to be labeled as a disabled person because that is not me. Yes, I have MS and so I have a disability – but I am a person and my life is my own.

Within the MS world as we know it, I own not just my life but my body, too. And this means that I won’t blindly follow any so-called “accepted” treatment routine. All patients have the right to know everything about any proposed treatment, both its advantages and disadvantages, before agreeing. Our lives and our bodies really are our own, and we owe it to ourselves to take the very best care of them both.

What that means is that we, not the doctors, have the final say over our treatment. Whether or not we accept a disease modifying therapy (DMT), HSCT, natural medications or simply a diet, doctors can only advise. The power is ours and we must not be afraid to use it.

This article, written by me, first appeared on Multiple Sclerosis News Today.

 

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ian profileIan Franks is Chief Columnist and Patient Specialist of Multiple Sclerosis News Today. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist MS, Health & Disability blog at www.50shadesofsun.com. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

 

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Significant profits at stake in MS drug patent battle

It is well known that pharmaceutical companies make a great deal of money from their products.  It is also indisputable that they make significant profit from the drugs they sell to treat those of us with chronic illnesses, including multiple sclerosis.

There are widespread beliefs that some companies manipulate the system to gain further patent time from their drugs.

CopaxoneThis has been brought into sharper focus because two pharmaceutical companies are currently locked in a battle over MS drug Copaxone.

Copaxone is sold by Teva Pharmaceuticals, under patents licensed from Yeda Research & Development Company, but rival Mylan NV is challenging the validity. In fact, Mylan petitioned the US Patent and Trademark Office to review the Copaxone patents’ validity last year. The patents, which expire in 2030, cover a 40-milligram injection of Copaxone that patients administer three times a week.

Now, the office has decided that two of the patents are considered ’unpatentable’, with its decision on a third patent being due this Thursday, September 1.

Mylan has already filed with the US Food and Drug Administration (FDA) to bring out a version of the 40 mg drug but Teva spokeswoman Denise Bradley said that the company would, unsurprisingly, appeal the decision through the courts.

tevaIn its argument put to the patent office, Mylan said that a less-frequently administered drug was obvious and not deserving of legal protection.

Mylan Chief Executive Officer Heather Bresch said the decision was “comprehensive, well-reasoned, and highly persuasive in detailing the bases for the invalidity of Teva’s 40 mg patents.”

There is big money at stake too as IMS Health, a healthcare information company, is said to estimate sales of the drug to be $3.3 billion annually.

 

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Delays in Seeing Specialists a Growing Barrier to MS Diagnosis and Treatment

Ian FranksIan Franks is Multiple Sclerosis News Today’s Chief Columnist and Patient Specialist. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist Health & Disability blog at www.50shadesofsun.com. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

 

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Paralympians fear losing their cars through government benefit cuts

Some of the British athletes, including two with multiple sclerosis, heading to Rio for the Paralympics fear losing their cars supplied through the Motability Scheme after being reassessed as part of the government’s programme of benefit cuts and reforms. This has been revealed by a member of the ParalympicsGB team – according to the Disability Information Service.

The report, by John Pring, continues:

Some Paralympians have spoken previously of the importance of the support they receive from the benefits system, particularly through disability living allowance (DLA), but this is the first confirmation that any of them have lost that support as a result of the government’s austerity programme.

The concerns were raised by wheelchair-racer Ben Rowlings, one of the young track stars of the British team, who is set to compete in the T34 100 metres and 800 metres in Rio, and holds the British record at 100, 200, 400 and 800 metres.

He currently receives the higher rate mobility component of DLA, which has allowed him to use that payment to lease a vehicle through the Motability scheme.Hannah-and-Ben-702x336_edited

But like hundreds of thousands of other disabled people, he has been told he will be reassessed for the government’s new personal independence payment (PIP) – introduced in 2013 in a bid to cut working-age DLA spending by 20% – and that an assessment of his eligibility will take place next year.

The Shropshire resident does much of his training 50 miles away in Coventry, alongside fellow Paralympians Kare Adenegan and Mel Nicholls, and told Disability News Service this week that the PIP reassessment could put his career in jeopardy if it results in him losing his Motability car.

He said: “It is something that’s on my mind because without the access to having my Motability car… I wouldn’t be able to get to any of the training that I do.

“I need my car, I need the support to get me around to places, and training and work, because racing is my job, and without the support of the Motability [car]and the DLA, I wouldn’t be able to get to training.”

The 20-year-old said he knew of fellow Paralympians who have already lost their Motability cars after being reassessed for PIP.

He said: “There have been Paralympians who have been told that they are too able to claim Motability and they have had to fight to get the cars back because they have been taken off them.

“I don’t know too much about it, I haven’t spoken to them about it because that’s a personal matter for them, but it’s something I’m a little bit concerned about.”

He said he was not comfortable providing further details about colleagues, and could not say how many fellow team-members had lost their Motability vehicles, but added: “All I know is anyone with disabilities is getting assessed at the moment, so it’s a possibility for any of us.”

Last month, another ParalympicsGB star wheelchair-racer, Hannah Cockroft (pictured with Rowlings), told DNS she was “scared” that she would lose her independence when she was reassessed for PIP.

Cockroft, who won double gold at London 2012, has also yet to be assessed for PIP, but she said that she was dreading her eventual reassessment, the possibility of having her support cut, and potentially losing the car she leases through the Motability scheme.

Motability has said that it expects 35,000 vehicles will have to be returned by disabled people during 2016 as a result of the PIP reassessment programme.

Of Motability customers reassessed for PIP so far, 44% of them have lost their entitlement to the scheme and have had to hand their vehicles back.

You can read the full Disability News Service story here.

 

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Handling sleep and rest with MS

Sleep, rest, tiredness, and fatigue. How many times have we heard those talked about in the same breath as multiple sclerosis? So often that they are getting somewhat repetitive and tiring, or should that be tiresome? If I dare say that!

Rest is very important, getting at least eight hours’ sleep at night is just what the doctor orders, a good night’s sleep will help to fend off fatigue. You must have heard all that before. And, before you think I am going to dismiss that, I’m not.

sleepHowever, for me, the idea of going to bed at what most would call a sensible time is out of the question on most nights. I am a night owl, not an early bird. Lisa and I usually go to bed at about 3am. It suits me because unless my body says otherwise, as it does sometimes, this is when it is ready to switch to sleep mode. Going to bed any earlier usually results in a lot of tossing and turning and very little sleep.

Not that turning in so late 1eads to ‘burning the candle at both ends’, because it doesn’t. I tend to wake up about seven hours later and so make my start to the day at about 10.30, now that is a civilized time.

Ten years without going out to work has helped the adoption of such ‘time-shifted’ hours and, now that I am writing for Multiple Sclerosis News Today, it works really well. As the company is based in Texas, when it is 5pm there, my local time is already Midnight.

What’s more, I need to be able to talk to people around the world, so a more flexible timetable is very useful.

Do I get tired earlier than 3am? Yes, naturally, sometimes I do. Then I go to bed earlier. And if a daytime nap is needed, my armchair also happens to be a very comfortable recliner.

Of course, like many people with MS, I am not excused from fatigue. It really can hit hard sometimes, like a train, and has kept me off my feet for much longer than simple tiredness. Actually, one thing that Lisa has just pointed out is that, since moving to the better weather we enjoy in Spain, the dreaded fatigue has only made a very rare appearance. But whether or not that is any way connected to the increase in sunshine and, consequently, vitamin D, I have absolutely no idea.

 

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One MS event closes as another starts in the same venue, it’s all happening next month

MS Life, billed as the big-gest MS lifestyle event in Europe, is set to begin at lunchtime on Saturday September 17 just as the 32nd congress of ECTRIMS, the European Committee for Treatment and Research in Multiple Sclerosis1, draws to a close in the very same venue – the ExCel, in London.

ectrims logoMore than 8,000 researchers and clinicians with expertise in the field of multiple sclerosis will be gathering in for the ECTRIMS congress, according to Multiple Sclerosis News Today.

There, more than 2,000 abstracts will be presented in the 61 sessions planned for this year’s congress, starting September 14. The sessions will be grouped around five topics: imaging, where 213 abstracts will be discussed; immunomodulation and immunosuppression, the topic of 195 abstracts; clinical assessment tools, 102 abstracts; long-term treatment monitoring, 91 abstracts; and risk management for disease modifying treatments, 87 abstracts.

MS Life is organized by the UK’s MS Society2 and is fully accessible and there are even children’s activities to keep the kids busy while adults explore.

ms life logoVisitors can expect talks and workshops on everything MS, including symptoms, families, mental health, sex, and claiming benefits. Then there will be MS research updates, cookery demos and wheelchair dancing. They’ve even got a spa to help to relax.

The event is jam-packed with things to do before it comes to an end at 4pm on Sunday 18. The full MS Life programme can be found here.

Attendance at MS Life is free but donations to the MS Society would be welcomed. You can book your place here.

MS Life is planned to be held every two years. It was last held in Manchester in April 2014 but was moved to September this year to connect with ECTRIMS.

 

1 ECTRIMS is the largest independent Europe-wide professional organization dedicated to the understanding and treatment of MS. Its mission is to enhance research by creating networking and collaboration opportunities between scientists and clinicians working in the field, with the ultimate aim of improving basic and clinical research and providing benefits for people affected by MS.

2 The MS Society is the UK’s biggest MS charity. It has more than 35,000 members who have a say in how it is run with 5,500 volunteers giving over 700,000 hours every year. Some 265 staff work in all four nations of the UK where more than 270 branches support people with MS locally. The society has one aim: to beat MS.

 

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Nine myths about MS

Myth: Multiple Sclerosis is a death sentence

Fact: No, it’s not, but it is a Life sentence. Life expectancy is close to normal for most people with MS. It is a Life sentence because, as yet, a definite cure has not been found.

There are many disease modifying therapies (DMTs) that are claimed to slow the disease progression and reduce symptoms but each has its own side effects. Opinions differ but, maybe, the nearest we have to a cure is the, as yet unapproved, Hematopoietic Stem Cell Transplant (HSCT).

FactsMythsMyth: You’ll soon be in a wheelchair

Fact: Unlikely, actually most people with MS will never need a wheelchair or other walking aid to move around. However, about 25% will – although some, like me, will only use a wheelchair to travel longer distances.

Myth: Everyone’s MS is the same

Fact: This is simply not true. Just because someone you know who has MS can do certain things but not others, and has certain symptoms, is NO indication that you or anyone lose will progress in the same way.

No two people with MS have the same symptoms; that’s why it is known as the Snowflake disease.. Some people have mild numbness in the limbs once in their lifetime, while others may develop severe paralysis or loss of vision. The course of MS is often unpredictable.

Myth: Young people cannot get MS

Fact: MS is not an elderly person’s disease. Most people are diagnosed between the ages of 20 and 50. However, children, teenagers, and even seniors can develop MS. Age is irrelevant.

Myth: The number of MS cases is increasing

Facts: Well, this not a total myth as more peole are being diagnosed now than previously BUT that may be because doctors are now better equipped, with MRI scans for example, to help them make that diagnosis.

What we do know is that the gap between women and men with MS is growing. It used to be two women being diagnosed for every one man but now it is nearer four to one.

Myth: Women with MS cannot become pregnant

Fact: Oh yes they can. Indeed, it may actually be a good thing as many will go into remission during their third trimester. There is even a growing body of evidence that pregnancy can lower a women’s risk for life.

Myth: Mothers with MS cannot breastfeed their babies

Fact: This probably stems from the fact that some of the medications used to treat MS can’t be taken while breastfeeding. However, with medical advice, it may be possible to stop those medications temporarily to allow a period of breastfeeding.

Myth: It’s all in your genes

Fact: Genes do play a role, and some forms of the disease havle been proved to be hereditary, however, genes are only part of the story. Viral infections and environmental factors are also in the mix.

Myth: People with MS shouldn’t exercise

Fact: More than 20 years ago this would have been the advice but in 1996 researchers at the University of Utah showed that aerobic exercise improved many of the symptoms of MS including bladder and bowel function, fatigue, and depression.

On the negative side, exercise can cause someone with MS to become overheated, which can trigger symptoms, but staying hydrated and not overdoing the activities can mitigate that.

 

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New Pre-HSCT Treatment May Be the Future, but HSCT with Lower Dose Chemo is Right Choice for MS Patients Now

News that scientists in the US are working to find a new pre-HSCT treatment to carry out stem cell transplants without the need for chemotherapy, as published in Multiple Sclerosis News Today, leaves me with mixed feelings.

While such a development could potentially be great news and an important development, it must be remembered that such a method is still years away.

MS ribbonIn the meantime, it needs to be recognized that chemotherapy is not just a part, it is the key part of stem cell therapy. It is chemotherapy that carries out the most important task of suppressing the faulty immune system that attacks the myelin sheath; the stem cells just help the healthy immune system rebuild more quickly — something it would do without the new stem cells, but over a much longer time.

That is why people often say ‘no chemo, no cure’.

My concern is that there are too many clinics trying to lure people into stem cell therapy without chemo and they could possibly latch onto this news, allowing patients to gain a false impression of what they are being offered.

New pre-HSCT Treatment Is Still Being Studied

Let me make my position quite clear: Right now, the only stem cell therapy for MS patients worth considering is autologous non-myeloablative HSCT (hematopoietic stem cell transplant). Autologous because it harvests your own healthy bone marrow stem cells for later transplantation; non-myeloablative because that protocol involves much lower doses of chemotherapy drugs, making it easier for your body to tolerate than the myeloablative’s aggressive chemotherapy protocol.

Myeloablative HSCT was originally developed as a cancer treatment, for which higher doses of chemotherapy are advisable. But the vast majority of clinics that now offer this treatment for MS have dropped the myeloablive protocol in favor of the safer non-myeloablative one.

I shall be watching the developments at Stanford University School of Medicine with great interest as scientists battle to develop a working method to suppress the human immune system without using chemotherapy. According to their study, “Hematopoietic stem cell transplantation in immunocompetent hosts without radiation or chemotherapy,” published in the journal Science Translational Medicine, the method has been successfully tested in mice. But it still has a long way to go before it’s proven safe and effective in humans, and if so, it could revolutionize MS treatment.

If it works in humans like it did in mice, the researchers say they would expect that the risk of death from blood stem cell transplant would be effectively eliminated, according to the study’s senior author, Dr. Judith Shizuru, MD, PhD, and a professor of medicine at Stanford.

“If and when this is accomplished, it will be a whole new era in disease treatment and regenerative medicine,” said Dr. Irving Weissman, a study co-author and professor of pathology and developmental biology at Stanford, who is also the director of theStanford Institute for Stem Cell Biology and Regenerative Medicine, and director of theLudwig Center for Cancer Stem Cell Research and Medicine.

The words “if” and “when” are key here. Until that time comes, in my opinion, autologous HSCT using the non-myeloablative protocol is the only real choice for MS patients who want to have stem cell therapy.

 This article, written by me, first appeared on MultipleSclerosisNewsToday.com.

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Ian Franks
Ian Franks is our Chief Columnist and an MS Patient Specialist. He enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist Health & Disability blog at www.50shadesofsun.com. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.
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