MS researchers find new switch for myelin repair

Researchers have found a brain molecule that promises to have a vital role in the repair of the myelin sheath. This is damaged in people with multiple sclerosis.

The molecule was found by a research team at the MS Society Edinburgh Centre for MS Research, in the UK. It amounts to a switch that can promote myelin repair in the brain and spinal cord.

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Dr Veronique Miron of the Edinburgh Centre for MS Research (pic: MS Society).

Dr Veronique Miron headed a team that previously showed that a protein called activin-A is important in remyelination. However, at that time, despite their efforts, it was not clear how it worked.

This time, their new research has found the exact switch in cells that it triggers. Studies in mice showed that when this switch, or receptor, is turned on by the activin-A protein. According to their report, which was published in the journal Acta Neuropathologica, it increases the number of myelin-making cells. As a result, it boosts myelin repair.

The Edinburgh team used tissue from the MS Society Tissue Bank to look for the ‘receptor’, called Acvr2a, in MS brain lesions.

They found that In tissue from people with progressive MS, levels of Acvr2a were higher in areas where myelin repair was active. Conversely, where myelin repair was not taking place in MS lesions, levels of the receptor were lower.

Search for new treatment

Next, scientists will look to identify drugs able to target Acvr2a to promote myelin repair. These could then be developed into treatments for people with MS.

Senior author Dr Veronique Miron said: “When we first discovered this protein activin-A, we didn’t know exactly what role it played in remyelination. We now know it binds to a specific receptor, which then causes cells to carry out myelin repair.

Dr Susan Kohlhaas, MS Society director of research (pic: MS Society).

This is a really exciting discovery because we can now focus our efforts on developing drugs that target the receptor. If we can do that, we can encourage cells to make new myelin after damage has been done in MS.”

MS director of research Dr Susan Kohlhaas said: “We’re thrilled to be supporting Dr Miron’s ground-breaking work. Many of the 100,000 people living with MS in the UK still don’t have any treatment options. Finding new targets like this receptor mean we’ll be able to develop more effective treatments and stop MS faster.”

While this discovery is important to everyone with MS, it’s particularly exciting for anyone who, like me, has a form of progressive MS.

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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 for your general knowledge only. It 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. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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.

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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.

Missing Pieces: Missing too much to be meaningful

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While I hate to decry any research connected to multiple sclerosis, I feel that this is one of those times. I cannot stay quiet.

A new report says 25% people with MS in the UK don’t know about treatments that may help delay disability. And that’s despite most of them saying disability is their big concern.

But, although the report talks about massive percentages backing up supposed `facts’, those figures gloss over a big problem. The size of the research sample is pathetic.

The MS Society estimates there are 107,000 people with MS in the UK, but the sample size was just 100. Absolutely ridiculous. Additionally, the researchers also surveyed 120 neurologists.

According to CheckMarket, a leading cloud-based survey software solution with more than 10,000 users in 150 countries, the sample size needed to be nearly 2,350.

Apparently, the report was funded by Sanofi Genzyme and conducted by Adelphi Research UK. It is titled The Missing Pieces though, as far as I can see, the main thing missing was a big enough sample.

Only 100 people gave their views, so any percentage given cannot be scaled up to purportedly represent the views of 107,000 people.

It is a great shame really, as the research results would be worth considering if the sample was large enough and was truly representative. But it was neither. Also, online questionnaires are not the best way to obtain a representative sample.

‘Missing Pieces’ misses target

The organizers claim that The Missing Pieces campaign aims to explore attitudes and behaviors around MS treatment in the UK, and to identify gaps in knowledge, understanding, conversations, and treatment/care plans.

Sad to say, because they didn’t plan well enough, their efforts have failed to reach that aim in any meaningful way.

Bearing in mind my warning that the views of 100 people are unlikely to be meaningful, here are its major findings:

  • Around three-quarters of healthcare practitioner think MS patients face delays in beginning DMTs. They blame poor access to neurologists with MS specialities. This is despite the fact that disability prevention is a key goal of the country’s National Health Service. An MS neurologist is needed to start a patient on such treatment
  • 45% of patients said their primary healthcare specialist was an MS nurse. And 20% reported turning most to general practitioners
  • Among all patients surveyed, 36% said they had not seen a neurologist in the past 12 months
  • 50% of patients said they discussed disability with a doctor or nurse at the time of diagnosis. Yet only 34% reported having continuous conversations on disability during subsequent visits
  • 69% of healthcare practitioners reported “routinely discussing” disability with patients around the time of diagnosis
  • Among patients, only 22% reported discussing treatment goals with a healthcare practitioner
  • 45% of patients said they were “scared” they would be disabled

Sanofi Genzyme is the specialty care unit of Sanofi. It markets Lemtrada (alemtuzumab), and Aubagio (teriflunomide), both for use by people with relapsing-remitting MS.

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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.

Mixed messages about beta-interferon safety to treat MS

Research that is meaningful is essential. It is what, after all, what we need to find a cure for multiple sclerosis and other debilitating diseases.

However, a new study from the University of British Columbia, Canada, puzzles me. The study “Evaluating the safety of beta-interferons in MS” looked at potential adverse events when treating relapsing remitting MS (RRMS).

When the findings were published in Neurology, they came with a strangely conflicting narrative.

Let me explain.

Increased risk

The study found an increased risk of events such as stroke, migraine and depression, as well as abnormalities in the blood, when beta-interferon is taken for MS. The team discovered this by analysing the health records of more than 2,000 British Columbians with MS between 1995 and 2008.

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Professor Helen Tremlett.

So, that’s not so good. But Professor Helen Tremlett, senior author of the study, said that beta-interferons have a favourable safety profile, especially compared to the newer therapies for MS. And she added: “That is still the case; our study does not change that.

“However, very few studies had comprehensively and quantitatively assessed their safety in real world clinical practice. Our findings complement and extend on previous observations.”

Tremlett is a Professor in the department of medicine at the Djavad Mowafaghian Centre in Brain Health. She also said: “Once a drug is released on the market, there are very few ways to systematically monitor adverse events. 

“Clinical trials cannot identify all adverse effects of a drug treatment partly due to small sample sizes and relatively short follow-up periods.”

Beta-interferon research undermined?

So, the study shows that people taking beta-interferon for MS are at great risk of having a stroke, migraine and depression, as well as abnormalities in the blood. But they stress that patients and physicians should not change their treatment plans. They say that the risk to individual patients will vary greatly depending on individual factors.

To me that attitude, of ‘yes, the risks are greater but never mind’, devalues the results. In fact, to my mind, it undermines the whole study. The question I must ask is: why waste money on research if you are going to go against the results?

On the plus side, besides the negative effects, Tremlett and her colleagues made a positive discovery. They found a reduced risk of bronchitis and upper respiratory infections with taking beta-interferon for more than two years. These infections can be common and problematic for people living with multiple sclerosis.

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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 has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. Diagnosed with MS in 2002, he continued to work until mobility problems made him retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective. Besides that, he is a keen advocate on mobility and accessibility issues.

Meet Phoebe Scopes, First MS Patient from Abroad to Undergo HSCT in Moscow

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Hematopoietic stem cell transplantation, or HSCT for short, is provided at various centers around the world to a mix of people with multiple sclerosis.

As regular readers know, two months ago I visited the impressive facilities of the A.A. Maximov Department of Hematology and Cellular Therapy, at the National Pirogov Medical Surgical Center in Moscow. There, besides meeting Denis Fedorenko, MD, and his staff, I was able to mix with patients from the U.S., Great Britain, Australia, Norway and Italy.

But the Moscow center did not start out treating international clients. On my return home, I  got in touch with a woman who was the very first patient from another country (Great Britain) to be given HSCT for multiple sclerosis.

Her name is Phoebe Scopes. She is 46 years old and lives in London. This is the first part of her story, exactly as she told me.

Ian: Phoebe, what was your MS history prior to HSCT?

Phoebe: After experiencing almost a year of intermittent sensory abnormalities and bouts of fatigue, I was eventually diagnosed with relapsing-remitting multiple sclerosis in early 2008. With exception to these episodes, I was free of any disability during this time and, for a while, I merely considered MS as a minor and occasional interruption in my life.

Phoebe Scopes

Before diagnosis, I had heard of MS but had no idea what it was. But knowing more about it now, I understand that I was experiencing small, infrequent relapses. Thinking back, it is also extremely likely that the optic neuritis I experienced briefly six years before diagnosis was a sign and had occurred during the benign stage of disease.

I am a mother, wife and designer, and was very fit and active. I cycled six miles a day to and from work, I was a fitness boxer for 13 years and, in early 2009, a year after diagnosis — now with an EDSS of about 3.0 — I took part in a 100-km, eight-day trek across the Sahara desert. The trek was extremely challenging, but I had one of the best experiences of my life. The Sahara trek was one of those things on my bucket list, so I was also very grateful to have been able to do this before further disease accumulation.

Having experienced and overcome various illnesses growing up, I just considered MS as another one of those medical hurdles that I needed to jump over. I was no stranger to hospitals, illnesses and treatments, but for over 10 years, I had been drug- and symptom-free, always opting for nutritional intervention to maintain well-being.

My initial relationship with medications to treat those conditions brought a host of side effects, so I was reluctant to use anything for my MS, but felt overwhelmed about having this ‘incurable’ disease. One such side effect on some of the MS drugs was feeling very tired and drowsy all the time, which seemed to disable and restrict me more than the relapses I was having. So, I declined all the other drugs being offered by my neurologist, who regularly urged me to start taking them.

I would turn up to [the] clinic with articles, or would ring my neurologist to tell him about my findings regarding the drugs he wanted me to take.  The articles usually, to an extent, contradicted his information so I think that my neurologist considered me a bit of a troublemaker! So, instead of the drugs, I started researching and looking at other therapies that could help arrest my MS and tackle minor difficulties that I was beginning to encounter.

My research took me and my husband to various places in Europe and the United States, where I met and spoke with some interesting people. And while the therapies I had were initially effective, their results were short-lived. Some might call this the placebo-effect, and maybe this was the case with some, but not all, the therapies.

I just think that MS is a very complex disease of which no two people are affected in the same way, and most of the time, some of these therapies or treatments need to be repeated a few times before they stick!

Next week, I move to 2009 and beyond in Part 2 of Phoebe’s story.

This story, written by me, was first published by Multiple Sclerosis News Today.

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career 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. 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.

Progressive MS gets grants boost

Three new grants totaling £3.6 million are to be made by the International Progressive MS Alliance to researchers in an attempt to speed up the pace of research into progressive MS. This is good to see as research into finding treatment for this type of MS is often said to have lagged behind.

The Alliance is a international collaboration of MS organisations around the world and these Collaborative Network Awards are each three-year grants.

The projects receiving the funding are:

  • Identifying a biomarker of disability progression for use in clinical trials

This network is led by Douglas Arnold from McGill University in Canada and includes researchers from the Institute of Neurology at University College London. The team is pioneering the development of magnetic resonance imaging (MRI) markers that signal disease progression, and adapting these for use in early clinical trials of progressive MS treatments.

  • Bioinformatics and cell reprogramming to develop an in vitro platform to discover new drugs for progressive multiple sclerosis (also known as BRAVEinMS)

This project is led by Gianvito Martino from San Raffaele Hospital in Milan, Italy. The BRAVEinMS team is working to identify molecules that may have a role in protecting nerve cells or the capacity to promote myelin repair.

  • Development of a drug discovery pipeline for progressive MS

Francisco Quintana from Brigham and Women’s Hospital in the US is leading a network spanning America, Austria, Canada and Israel. Their goal is to identify drug candidates that may be effective therapies for progressive MS and that will be ready for evaluation in patients within four years.

Bringing great hope

Caroline Sincock has progressive MS and is on the Alliance’s Scientific Steering Committee. She said: “As someone who lives with progressive multiple sclerosis, it brings me great hope to see such international efforts to work together to answer questions about one of the least understood forms of MS.”

 

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