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50shadesofsun

News and Opinions about MS, Health & Disability

Drugs, risks, spending cuts, deaths, new drugs, and so much more

As we reach the start of another year, it seems a good time for me to review the last 12 months, as seen through the eyes of 50shadesofsun.com.

January

The year began by focusing on hematopoietic stem cell transplantation (HSCT). Dr Denis Fedorenko of the HSCT centre in Moscow published a guide to the procedure.

Russian Physician’s Guide to HSCT in Moscow

people withFebruary

UK government policies grabbed my attention, along with actions regarding people with disabilities and benefits to which they are entitled.

Disabilities: Government loses tribunals, then changes rules

Disabilities: Government warned forced activities ‘could make health worse’

More flock to accuse disability assessors of lying

March

New treatments came to the fore this month. Ocrevus gained approval from the FDA, while Zinbryta got the go ahead for use in the UK.

After Long Wait, Zinbryta Gains Approval in Areas of the UK

Ocrevus: Counting Down to Expected FDA Approval

April

Allegations had been made that new disability access policies at Disney parks was discriminatory. However, a court decided that the new way of doing things was perfectly ok.

Disney Disability Access Rules Don’t Break Law, Court Rules

May

MS treatments were in the spotlight once again. Questions were being asked about the drug safety and why many people choose to avoid them.

Mixed messages about beta-interferon safety to treat MS

Why are DMTs – Drugs to treat MS – Resisted by so Many?

June

My attention was caught by one of the UK government contractors trying to put the chaotic assessment process behind it. It chose to change its name but that was fooling no one.

I also looked at the much valued and desired matter of independence.

Atos tries to escape its past though superficial rebranding

Even a little independence is a great feeling

July

Risks appeared on two fronts. First, death and serious injuries to patients to the use of Zinbryta being limited in Europe. Second, people with disabilities in the UK were still facing the risk of benefit cuts.

Zinbryta use restricted in Europe after a death and four serious liver injuries

Disability benefit cuts are still a real risk

August

Issues with lack of balance and mobility means that falls are a frequent reality. However, not all falls are the same.

I also looked at MS treatments and how close we might be to finding the holy grail – a cure.

Falls – the good, the bad, and the ……

Cure for multiple sclerosis: Are we close?

September

Inside criticism surfaced about mismanagement of disability benefits. Nothing new to me but good to have confirmation from within. On the same tack, the UK government department responsible for benefits was trying to hide assessment problems.

Talking of confirmation, my theory the MS is linked to glandular fever, or mononucleosis, was backed by researchers.

Department helpline worker lambasts mismanaged disability benefits system

I said it 14 months ago, now researchers agree: MS is linked to ‘mono’

DWP fights to hide WCA ‘under-performance’ and PIP assessments

October

A number of drugs were labelled ‘rip-offs’ in a new report. These included MS drug alemtuzumab.

UK government officials proved they do not understand variable conditions, such as those experienced by people with MS.   

MS therapy alemtuzumab is named a ‘rip-off’ drug, report

Disability benefits stopped because government doesn’t understand variable conditions

November

The number of people wth MS in the USA is more than double that previously thought. Could that be similar elsewhere?

We knew UK spending cuts were dangerous but now we know that they have ben responsible for needless deaths.

Nearly 1 million Americans have MS, not 400,000 as previously thought – NMSS Study

Needless deaths caused by government spending cuts

December

Great to see the doctor who first suggested CCSVI treatment could help people with MS now agrees this isn’t true.

However, shocking to see that someone assessed as ‘fit to work’ died before the appeal could be heard.

CCSVI treatment does NOT work for MS, says clinical trial

Assessment disgrace: ‘Fit for work’ man dies before ESA appeal can be heard

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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 freelance medical writer and editor for various health information sites. 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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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Government contractor must pay £5,000 over dishonest assessment, court decides

A court has ruled that a woman with a disability be paid £5,000 compensation by a government contractor. The was because one of its assessors made a dishonest report that led to her being given insufficient benefits.

The contractor, Atos, is one of the companies that conduct assessments for the UK’s department for work and pensions (DWP). It assesses people claiming employment and support allowance (ESA), and personal independence payment (PIP). These are claimed by many with MS, other diseases, and disabilities.

Atos

Vanessa Haley (Pic: Huddersfield Daily Examiner).

The woman who was the subject of the dishonest report is Vanessa Haley, who lives in Huddersfield, England. Her written evidence to the court said the assessor had tried to “impede her entitlement” to PIP by This affected the rate of the daily living component Ms Haley was given and led to denial of mobility support.

The county court awarded Haley £5,000 when Atos failed to offer a defence to her claim for damages. She had alleged maladministration and that it was responsible for causing her health conditions to worsen.

Atos has since explained why it did not defend the legal action. A spokesman said: “We were made aware this week of this judgment. Our initial internal investigation indicates that we did not receive the claim form at our registered office. Until this investigation is complete we must reserve our position.”

Ah, so that’s why no defence was offered. It was not the company’s fault at all. No, it was all down to the postal service. Believe that? No? Nor do I.

Atos made to pay

Speaking after the case, Ms Haley said: “I didn’t do it for the money. I wanted and still do want this diabolical treatment of the sick and disabled to be exposed and stopped.

“It is exhausting constantly being worn down by the machine that is the Department for Work and Pensions and the PIP system. It is rarely absent from my thoughts, and as a result my anxiety is through the roof.”

She told the Disability News Service she was “angry” that she and other disabled people were being “dismissed and lied about”, because “through no fault of our own we have found ourselves in unfortunate and reduced circumstances.

“We are constantly being lied about, repressed and vilified. Many disabled people have become even further isolated by this system and have lost much, if not all of their care,” she said.

This ruling goes beyond what many people have been saying, that assessments are unfair. Now, one assessment  has been labelled ‘dishonest’. And, if one is, you can bet this is not an isolated case; there will be others that are just as dishonest.

Is it too much to expect the DWP to take control of its contractors and to ensure honest assessments? It shouldn’t be but, yes, much too much to expect of this government or its ministries.

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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 freelance medical writer and editor for various health information sites. 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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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

 

 

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Frankincense – a possible future treatment for MS, new research

One of the original Christmas presents may turn out to be a 21st century gift to people with multiple sclerosis.

Most people, whatever their faith if any, will be familiar with the story of the Three Kings, or wise men. According to the story, they arrived in Bethlehem and gave the baby Jesus their offerings of gold, frankincense and myrrh.

If you didn’t know, and I don’t see why you should, frankincense is an aromatic resin used in incense and perfumes. It is obtained from trees of the genus Boswellia.

frankincense

The tree from which frankincense is obtained.

Now, a group of researchers in Germany say that an extract can be used to treat relapsing MS.

The study, “A standardised frankincense extract reduces disease activity in relapsing-remitting multiple sclerosis (the SABA phase IIa trial)” was published in the Journal of Neurology, Neurosurgy, and Psychiatry, on December 16, 2017.

It found that an oral administration of a standardised frankincense extract (SFE) is safe and reduces disease activity in patients with relapsing multiple sclerosis (RMS).

The researchers concluded that the oral SFE was safe, tolerated well and exhibited beneficial effects on RMS disease activity. They added that it warrants further investigation in a controlled phase IIb or III clinical trial.

Frankincense study explained

The study reports that, after a 4-month baseline observation phase, patients were treated for 8 months with an option to extend treatment for up to 36 months.

It says: “The primary outcome measures were the number and volume of contrast-enhancing lesions (CEL) measured in MRI during the 4-month treatment period compared with the 4-month baseline period.

“Eighty patients were screened at two centres, 38 patients were included in the trial, 28 completed the 8-month treatment period and 18 of these participated in the extension period.

“The SFE significantly reduced the median number of monthly CELs from 1.00 to 0.50 at months 5-8. We observed significantly less brain atrophy as assessed by parenchymal brain volume change.

“Adverse events were generally mild (57.7%) or moderate (38.6%) and comprised mainly gastrointestinal symptoms and minor infections.  

“Mechanistic studies showed a significant increase in regulatory CD4+ T cell markers and a significant decrease in interleukin-17A-producing CD8+ T cells, indicating a distinct mechanism of action of the study drug.”

The science seems to be based on the fact that frankincense contains boswellic acids that are anti-inflammatory.

It will be interesting to see if further studies will be undertaken and, if so, what the eventual outcome may be.

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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 freelance medical writer and editor for various health information sites. 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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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Christmas, Hanukkah, Yule, or another festival – disabled or not – let’s all be happy

Season’s greetings to one and all, family, friends, neighbours, acquaintances, and all my readers alike.

If you are disabled and find this season a challenge, be sure to pace yourself. As almost 17 years have passed since I received a diagnosis of having MS, I understand it can be difficult. It is easy to get caught up with enthusiastic family members and friends. But, your health matters, so please stay in control and don’t do more than you can manage.

Papa Noel.

This time of year is full of festivities, not just Christmas which, although supposedly marking the birth of Christ, has become a secular celebration. I say ‘supposedly’ because scholars of history say he was actually born in April. Christmas was only put in December by the early church to take over from the pagan festival of yule and the birth of the sun king.

Other holidays that are celebrated widely in December include: Judaism’s Hanukkah, Buddhism’s Bodhi Day (day of enlightenment), and Kwanzaa, which is a Pan-African festival popular in the US.

And here in Spain, the 12th day of Christmas – January 6 – is the main fiesta. It is the Dia de Los Reyes, or Three Kings Day.

Three Kings Day

This is the day that the children of Spain, and other Hispanic countries, traditionally get presents for Christmastime.

While children from other parts of the world eagerly await Santa Claus on Christmas Eve night, children here look forward to the evening of January 5. Then, children leave shoes by the door in the hope that the three kings will leave gifts for the morning. Does that sound familiar?

These days, though, Santa Claus seems to be displacing the traditional Three Kings at Christmastime in Spain. Santa Claus is becoming more common, but even families that choose to embrace “Papa Noel” also tend to wait for the Kings.

three kings

Three Kings parade.

The arrival of the Three Kings on the evening of January 5 is marked throughout Spain. Melchor, Gazpar and Baltasar (the African king) appear in parades through villages, towns, and cities. These also feature floats from which locals throw handfuls of sweets to the children waiting in the streets.

Just as it is traditional for nativity scenes not to include the baby Jesus until Christmas Day, the wise men, or three kings, are added later. The images of the wise men are moved closer to Bethlehem over the Christmas season. They arrive at the stable on the 6th.

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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 freelance medical writer and editor for various health information sites. 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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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.  

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CCSVI treatment does NOT work for MS, says clinical trial

At last, researchers have found the truth about using angioplasty to treat CCSVI in people with multiple sclerosis. They have found it is not effective and say it is not recommended.

The research team included Dr Paolo Zambini, the doctor who first proposed there was a link but now accepts that he was mistaken.

CCSVI, or chronic cerebrospinal venous insufficiency to give its full name, is characterized by restricted venous outflow from the brain and spinal cord. Its treatment, by venous percutaneous transluminal angioplasty (PTA). This uses balloons to enlarge veins so that more blood flows out of the brain and spinal cord, and so restore normal blood flow.

However, it has been controversial on two fronts. The first is whether CCSVI is associated with MS. And, second, whether its treatment by PTA is beneficial in people with MS.

Researchers in Italy have conducted a clinical trial, and its report states that the PTA procedure did NOT improve the participants’ functioning or reduce their brain lesions.

In conclusion, researchers said that venous PTA cannot be recommended in patients with MS. It has proven to be largely ineffective technique, although safe.

CCSVI trial explained

ccvsiResearchers published their study in the journal JAMA Neurology. The title is “Efficacy and Safety of Extracranial Vein Angioplasty in Multiple Sclerosis A Randomized Clinical Trial.

The objective of the trial was to determine the efficacy and safety of venous PTA in patients with MS and CCSVI.

The Brave Dreams trial was a multicentre, randomized, double-blind, sham-controlled, parallel-group trial to evaluate the efficacy and safety of venous PTA in patients with MS and CCSVI in extracranial or extravertebral veins.

It analyzed 177 patients with relapsing-remitting MS; 62 were ineligible, including 47 (26.6%) who did not have CCSVI on colour Doppler ultrasonography screening. A total of 115 patients were recruited in the study timeframe. All patients underwent a randomized, double-blind, sham-controlled, parallel-group trial in six MS centres in Italy. The trial began in August 2012 and concluded in March 2016; data was analyzed from April 2016 to September 2016.

Patients were randomly allocated (2:1) to either venous PTA or catheter venography without venous angioplasty (sham).

An end to the CCSVI controversy?

Dr Paolo Zamboni.

Controversy has raged since 2009, when Zamboni, from the University of Ferrara in Italy, put forward the idea that CCSVI may contribute to nervous system damage in MS. He also published results from a study which demonstrated that CCSVI was present in all the individuals with MS who he examined.

In truth, however, not everyone with MS has CCSVI. Further, although considered a safe procedure, the angioplasty treatment does not help with MS symptoms. This well-regulated double-blind clinical trial says so – and so, now, does Dr Zamboni.

As far as I am concerned, this puts the whole issue of CCSVI treatment for MS to rest. But I am sure some diehards will attempt to keep the controversy going.

I have always been highly skeptical of claims that the treatment could help relieve MS symptoms. This trial proves the claims to be wrong. Zamboni admits he was wrong. Enough said.

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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 freelance medical writer and editor for various health information sites. 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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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

 

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Healthy eating can improve MS symptoms, but societies won’t endorse any one diet

Multiple sclerosis organisations around the world back the idea that eating a healthy diet can help people with the disease. But they are refusing, correctly in my view, to get behind any one diet.

dietA new study, published in Neurology, says that eating a healthy diet may be linked with reduced disability and fewer MS symptoms. Such a diet would include fruits, vegetables, and whole grains.

I have never attributed any importance to people saying that diet cured them of MS. In fact, it’s nothing short of hogwash. But that’s not to say that diet cannot help, just that it is not a cure by itself.

There are a number of dietary plans for which claims are sometimes made, and about which strong views are held. These include the Swank and Overcoming MS diets. Supporters of Swank, for example, believe it can reduce the frequency of flare-ups and lessen the severity of symptoms.

However, the US’s National MS Society and the UK’s MS Society say there is not enough evidence to recommend any one diet.

The authors of the new study, led by Kathryn C. Fitzgerald, acknowledges that there is a lack of evidence on the potential influence that diet may have on MS symptoms.

Fitzgerald works in the Department of Neurology, Johns Hopkins School of Medicine in Baltimore, Maryland, USA. She says: “People with MS often ask if there is anything they can do to delay or avoid disability. Many people want to know if their diet can play a role, but there have been few studies investigating this.”

Severe disability 20% less likely

To examine the role that diet may play in MS, Fitzgerald’s team looked at questionnaires completed by 6,989 people with MS as part of the North American Research Committee registry.

The team found that people in the group with the most healthy diet were 20% less likely to have more severe physical disability than people in the group with the least healthy diet.

Fitzgerald adds: “While this study does not determine whether a healthy lifestyle reduces MS symptoms or whether having severe symptoms makes it harder for people to engage in a healthy lifestyle, it provides evidence for the link between the two.”

The authors acknowledged that the study has two limitations:

·         First, participants were mostly older white people who had been diagnosed with MS for an average of 20 years. So, although people with all types of MS were included, the findings might not apply to everyone with the disease.

·         Second, the study’s design does not provide an insight into whether healthy diets might influence MS symptoms in the future.

What can a diet do for someone with MS? In my opinion, about the same as it can do for someone without the disease; a balanced diet helps to achieve and maintain a healthy level of fitness. But it is not a cure and never can be; don’t let anyone tell you otherwise.

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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 freelance medical writer and editor for various health information sites. 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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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Cut price defences – so government department doesn’t fear appeals

Many people believe it would cost the government less to pay disability benefits from the beginning, rather than face appeals.

The benefits, Employment and Support Allowance, and Personal Independence Payment, are claimed by people with disabilities. These include those of us with disabilities resulting from diseases such as MS, or other causes.

I was one of the many who thought the appeals were expensive. Now, though, figures found in the back of a new department for work and pensions (DWP) document show a different story. 

Indeed, it seems the UK’s DWP can make a ‘mandatory reconsideration’ decision for less than £40. Further, appeals can be handled for under £100 each.

For that sort of money, you have to ask how much commitment the department is devoting to reconsiderations and appeals. In short, not enough time for the decision-maker to give any real attention to each case.

appealsCampaigner and claimant-helping website workandbenefits.co.uk agrees. It says: “More likely, it’s enough for a very quick flick through the papers, maybe a phone call and then cutting and pasting some standard phrases refusing to change the decision.

“And for an appeal, which might run to over 100 pages of documents, £100 isn’t going to pay for more than the time needed to collate the paperwork and send it to the Tribunals Service.”

That’s ridiculous, but it is cheap! And that’s why the DWP does it.

appeals

Sir Ernest Ryder (pic: judiciary.gov.uk).

It doesn’t care that it’s defence of decisions, at appeals, have been rubbished by a top tribunal judge. Sir Ernest Ryder, senior president of tribunals, says most of the benefits cases that it hears are based on bad decisions where the department has no case at all.

Tribunal appeals: DWP defences poor

He told barristers, at a meeting of the Bar Council, that the quality of evidence provided by the DWP is so poor it would be “wholly inadmissible” in any other court.

Ryder also said tribunal judges found that 60% of cases were “no-brainers” where there was nothing in the law or facts that would make the DWP win.

He added that he and his fellow judges were so incensed by the volume of such cases that they were considering sending them back. Either that, or charging the DWP for the cases it loses.

However, the new figures do point out the DWP’s logic.

Step one: the DWP refuses benefits to many thousands of people who should receive them.

Step two: the DWP makes all those who challenge the decision go through the dispiriting reconsideration process.

The DWP knows that most claimants will give up as soon as they realise that their mandatory reconsiderations have failed. Others will drop out during the appeal process itself and never reach a tribunal.

Of course, some do stay the course and do have a tribunal hearing, leading to:

Step three: the DWP resists the appeal but, in most cases, is unable to defend a clearly unjust decision.

The sad truth is that the DWP saves so much money through incorrect and unfair decisions that it can well afford the tribunal losses. Perhaps, Sir Ernest is right – the DWP should be made to pay, financially.

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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 freelance medical writer and editor for various health information sites. 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 Society says a research triple whammy will stop MS

MS Society research communication manager David Schley has taken to Twitter to talk about what the society is doing to stop multiple sclerosis in its tracks.

In his Tweet, Dr Schley wrote:

We now know enough about what goes wrong in MS to know what needs to be done to fix it. 

Scientists are working on three ways to tackle MS: stopping the immune damage, promoting myelin repair and protecting nerves from damage.

research

Dr David Schley (pic: MS Society).

 

We’re not there yet, but we believe that if we achieve these goals then we can stop MS.

In MS, immune cells attack the protective myelin coating around our nerve cells. Myelin plays a vital role in how nerves work and also protects them from damage. 

When myelin becomes damaged, messages find it harder to get through – or can’t get through at all. That’s what causes the symptoms of MS.

Step 1: stop the damage in its tracks

To stop MS early we need to prevent our immune system damaging myelin.

There has been incredible progress in this area of research, and we now have 12 available disease modifying therapies (DMTs) for relapsing MS that help do this.

Researchers are also testing the benefits of stem cell transplantation (HSCT), which aims to stop the immune system attacking myelin. 

We’re starting to see progress in immune system research for progressive MS as well. Last year a treatment called ocrelizumab was shown to slow progression in primary progressive MS. And the latest results for the drug siponimod look promising for secondary progressive MS too. But these drugs can’t help if permanent damage has already been done.

Right now, we’re funding nine projects that look at the role immune cells play in MS.

Step 2: repair myelin

Our bodies have an amazing capacity to repair myelin and get nerves working properly again. But this repair becomes less effective over time and doesn’t work as well as it should in MS.

Researchers are finding new ways to put myelin back on nerves. We’re funding 12 myelin repair projects, including our world-class research centres in Cambridge and Edinburgh.

Every discovery brings new opportunities for us to develop myelin repair treatments – and these could be effective for everyone with MS.

Step 3: protect nerves from damage

We need to make sure that our nerves are happy, healthy and protected from damage. And this is even more important when myelin isn’t around.

Researchers are using their knowledge of nerves to design new ways to keep them alive and healthy. They’re aiming to find treatments that can prevent nerve loss, which could slow or stop the progression of MS.

We’re funding seven projects to help us on our way to having neuroprotective treatments for MS.

We’re excited because clinical trials of potential treatments for people with progressive MS are already underway. This includes our MS-SMART trial, as well as drugs like simvastatin.

Two things stand out for me in all this. First is the amount of work being funded by the UK’s MS Society and, second, that Dr Schley used Twitter to make his point.

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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 freelance medical writer and editor for various health information sites. 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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Take responsibility, vitamins, and a position for sleep

We should all take responsibility for our own health, and this is something I both advocate and practice.  That’s why I got my GP to refer me to an MS specialist neurologist here in Spain, and why Lisa and I have been looking at the possibility of buying an adjustable bed.

Regular readers may recall that blood tests revealed I was deficient in vitamins B12 and D. The neurologist prescribed supplements to put this right.

Livestrong.com says vitamin B12 plays an important role in many of our everyday functions. Without it, the nervous system and circulatory system cannot work optimally. B12 comes from many of the foods you eat. Some people do not get enough B12 in their diets, however, and others may have difficulty absorbing the nutrient from their food. In these cases, you may need supplemental B12.

supplementsSupplemental B12 is available in capsules, gels and even injections. The type you need depends on the degree of your deficiency. While most people’s blood B12 levels range between 200 and 900 pg/mL, according to Medline Plus, you may experience deficiency symptoms once your levels drop below 200.

B12 deficiency, which causes a number of unpleasant side effects. You may feel sluggish and weak, experience tingling in your hands and feet, feel confused or even have trouble with your balance.

Supplements to fix problems of low vitamins

As I also have a heart condition, I wanted to establish that vitamin D supplements work ok with blood thinners. Once again, livestrong.com provides valuable reassurance:

For some people, blood thinners are a necessity. They are prescribed to prevent heart attacks, strokes and blood vessel clots. There are two main types of blood thinners — anticoagulants, such as heparin and warfarin — or Coumadin — and anti-platelets, such as aspirin. Blood thinners are known to have many drug interactions, so read labels and packaging inserts when

Both the National Institutes of Health Office of Dietary Supplements and the Agency for Healthcare Research and Quality do not list any negative interactions between vitamin D supplements and blood thinners. Beth Israel Deaconess Medical Center indicates that taking vitamin D supplements while on certain blood thinners, such as heparin, may prove beneficial. Heparin may interfere with bone growth and vitamin D use in the body, which could lead to bone loss and osteoporosis. Taking vitamin D and calcium supplements while you are on heparin may help prevent this.

Then there’s the issue of sleep and the possible desirability of adjustable beds. We decided to research the pros and cons. This is what came to light:

Advantages of adjustable beds

They:

  1. provide a higher level of blood circulation at night
  2. help to relieve the typical aches and pains that come with life
  3. can relieve the symptoms of asthma
  4. can reduce symptom of indigestion, or acid reflux
  5. allow for a greater level of independence

Adjustable beds are often needed by those of us who have ongoing health issues that limit mobility. These beds help promote greater independence because they are easier to get inor get out of – without help from anyone else.

  1. It doesn’t prevent other bed-related fun

Whatever it is that you define as ‘fun’, from doing a crossword, checking Facebook, surfing the web, or something a little more intimate, it won’t be curtailed.

Disadvantages of adjustable beds

They:

  1. are expensive
  2. may be high maintenance costs
  3. can be loud
  4. are incredibly heavy 
  5. can be difficult to clean
  6. provide difficulty in movement

When used to raise your upper body or legs, adjustable beds keep you in one sleep position – on your back. To sleep on your side, you need to leave the bed flat, defeating the object of having an adjustable bed in the first place.

7. Not all the physical benefits that are promoted may be experienced

It is possible for you to spend a great deal of money on an adjustable bed, yet get no physical benefit from the change in how you sleep.

Bearing all that in mind, Lisa and I decided to check out a reclining sleep position without buying a new bed. So, we bought a special inflatable cushion (pictured above) which can elevate the mattress. This can raise your upper body by various degrees.

So far, the vitamin supplements are beginning to have some positive effect. And we have found the elevated position to be comfortable and both gained a better night’s sleep.

The trial goes on.

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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 freelance medical writer and editor for various health information sites. 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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Assessment disgrace: ‘Fit for work’ man dies before ESA appeal can be heard

Disability benefit assessors have been widely criticised for deciding wrongly that people are ‘fit to work’. The situation is a disgrace, the criticism is well deserved.

There have been a number of examples, but none more tragic than the case of Phillip Balderson. He had terminal cancer, but received a Department for Work Pensions (DWP) ‘fit for work’ assessment in February. It meant he no longer qualified for Employment and Support Allowance (ESA) that he had received previously. The decision was a disgrace – and he died less than four months later.

disgrace

Phillip Balderson was diagnosed with terminal oesophageal cancer in 2013 (Image: cascadenews.co.uk)

Phillip didn’t live long enough to see his appeal through but this Thursday the Baldersons are taking his challenge to a tribunal. I, for one, wish his family every success.

The full story, written by John Jeffrey, appeared on Mirror Online. It read:

Cancer patient dies before he could appeal the DWP ruling that he was ‘fit to work’

Phillip Balderson’s heartbroken family will now challenge that decision at a tribunal after he battled oesophageal cancer, psoriatic arthritis, anxiety, OCD and mental health problems.

A cancer patient died before he was able to appeal a Department for Work Pensions (DWP) ruling that he was “fit to work”.

Phillip Balderson’s heartbroken family will now challenge that decision at a tribunal.

The 46-year-old had worked at a Lake District hotel, but was diagnosed with terminal oesophageal cancer in 2013.

He also struggled with psoriatic arthritis , anxiety, OCD and a number of mental health problems.

Despite his difficulties, the DWP summoned him to a health assessment in February 2017 and ruled he was no longer eligible for Employment [and] Support Allowance.

They told him he had to look for work.

Mr Balderson, originally from Burnley, Lancashire, began appealing the decision.

But sadly died on June 5 before he could see the process through.

His daughter Chloe Balderson, 23, said: “He had terminal cancer and they were trying to send him to work. The people at the job centre were disgusted.”

The family, supported by Citizens Advice in Windermere, will be attending a work capability appeal to overturn the decision at South Cumbria Magistrates’ Court, in Barrow, on Thursday, December 14.

If it rules in their favour, any benefit payments will go towards the funeral.

A spokesperson for the DWP said: “Our thoughts are with Mr Balderson’s family at this time.

“We are contacting Mr Balderson’s next of kin to ensure they’re paid any benefits owed at the time of his death.

“The amount paid will be dependent on the result of the Work Capability appeal that is currently at tribunal.”

Terrible the way they treat people

Mr Balderson’s partner Rachel Stockley, 49, said: “He was getting Employment [and] Support Allowance, that was all fine, but then his dad died and his mental health got worse.

“Phillip just went downhill from there.

“Then he got a letter to say he had to go for an assessment and he was worried.

“He was being judged by someone who was meeting him for the first time and that was that.

“He was complaining about pains in his liver before he had to go to his job centre appointment, and got worse before his assessment.

“I’m doing this for Phillip really because he was gutted.

“I think it’s disgusting, it’s terrible the way they treat people.”

The family, who live at Maychells Orchard in Allithwaite, Cumbria, have suffered a number of setbacks as Miss Stockley was also diagnosed with cancer back in 2010.

She said her partner of 25 years never talked about his diagnosis and was “frightened” by it.

“He loved the quiet and loved walking, even when he was really ill we’d take him driving and he’d fall asleep in the car.

“The authorities need to show more concern towards people’s needs and not judge them by how they look but you see it all the time.

“You just can’t prepare yourself for it, even though you know it’s going to happen, it’s no different from someone dying suddenly,” she said.

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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.

* * * * *

50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. 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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