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Over a third of people with MS ‘keep condition secret’

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More than a third of people who have Multiple Sclerosis (MS) keep their condition secret, it has been revealed. 

In a survey of over 800 people living with MS, 35 per cent said they have kept their diagnosis private. 

Of the people who hid it, 

  • one in ten (nine per cent) kept it a secret from their partner
  • a third (33 per cent) kept it a secret from at least one family member
  • more than a third (34 per cent) kept it a secret from their employer
  • over half (59 per cent) haven’t told their colleagues.

When asked why they kept it a secret: 

  • over half (52 per cent) said they were concerned others would feel sorry for them
  • over a third (37 per cent) feared discrimination
  • four in ten (40 per cent) were worried it would impact their career
  • three quarters (74 per cent) said talking about MS made them nervous, or worried they weren’t explaining it properly.

The research, carried out by the MS Society, has been released to mark MS Awareness Week, which is encouraging people to #LetsTalkMS. 

One 50-year-old man with MS told NR Times he fully agrees with the findings of the research. 

“I completely understand why so many people keep their MS diagnosis a secret, I do too,” he says. 

“I told my wife, who I felt needed to know and it would’ve been worse trying to hide it from her, but beyond that no-one does and I don’t want them to. 

“I don’t want to worry my parents or my family, I don’t want friends to feel sorry for me and reconsider whether to invite me to things as they used to. 

“I’ve recently found a new job and I’m absolutely certain I won’t be telling my employer or colleagues about my MS until such time as I have to. I’m new in this organisation and don’t want people making judgements about what I may or may not be able to do. 

“I agree with every one of the findings of the research. Clearly many others have the same fears that I do about making your condition public, and then having to live with the consequences of that.”

The MS Society says it is committed to supporting people to be more open about their MS, and that no-one should have to keep it a secret. 

“More than 130,000 people live with MS in the UK, and we know many struggle to talk about it,” says Ed Holloway, executive director of digital and services. 

“This MS Awareness Week you’ll find new resources on our website to help start a conversation about MS, and others sharing their stories of speaking out for the first time.

“No-one should have to keep their MS a secret, and our free MS Helpline and local groups can be a great lifeline too.”

MS

3D micro brain models speed MS research

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Tiny 3D models that mimic vital aspects of the human nervous system have been developed in a step that could accelerate drug research for neurological conditions such as multiple sclerosis (MS).

The millimetre-wide models – created using stem cells from human skin samples – will be used to study myelin, an insulating substance that helps nerve cells communicate with each other.

Researchers say the models are the most natural representation of human myelination developed in a lab and are a promising platform for studying neurological diseases and for testing drugs for conditions linked to myelin loss, including MS.

Nerve cells are found in the brain and the spinal cord and connect to each other with branch-like links called axons, which have an insulating coat similar to electric cabling. 

This insulating coat is called myelin, and it aids the electrical and chemical information flow between cells.

Damaged myelin underlies a number of neurological conditions including MS – an incurable disease affecting more than 100,000 people in the UK – and leads to a wide range of symptoms, including mobility issues, fatigue and vision problems.

Lead researcher, Dr Owen Gwydion James, says: “Demyelinating disorders have a profound effect on the quality of life for patients. Now we have the capability of studying human myelination experimentally, a major goal is to identify drugs that can promote myelination. 

“We believe that this new approach could be a huge boost to the toolbox that allows us to do this effectively.”

Scientists at the University of Edinburgh’s Anne Rowling Regenerative Neurology Clinic and the Euan MacDonald Centre for Motor Neuron Disease Research developed their human myelin model using skin samples donated by volunteers.

Skin cells were reprogrammed into induced pluripotent stem cells, which can be turned into other cell types – in this case – spinal cord cells.

These cells were then grown slowly into organoids – 3D structures of cell bundles including neurons and distinctive brain cells known as oligodendrocytes that are key to creating myelin.

Crucially, the researchers were able to see myelin developing spontaneously around the axons between cells within the organoids.

By looking at the axons under a microscope, they could see that the myelin in this model was functioning as it would in a healthy brain or spinal cord.

The research team then created an organoid using stem cells from a patient with a rare gene mutation that affects myelination. The model showed that key aspects of this cell bundle were consistent with the disease.

These new models will allow scientists to compare the differences between the cells of healthy individuals and those with different neurological diseases and to test drugs of interest in human cells before using them in a full clinical trial with patients.

The researchers hope that their model will overcome the challenges of studying the human brain and nervous system at the cellular level, which is extremely difficult due to problems accessing brain and spinal cord tissue without risk and huge inconvenience to patients.

The approach complements animal models, which can be limited in how they reflect human disease and the way that drugs interact with human cells.

The authors say the model is a significant step forward in the study of human myelination and drug development, but caution that treatments tested on this model are still some way from being offered to patients.

The research was carried out in collaboration with the UK Dementia Research Institute and the MS Society Centre for MS Research at the University of Edinburgh.

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MS

Achieving my ambitions – however long it takes

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When Jessie Ace woke on her last day of university, unable to feel the whole left hand side of her body, her dreams of becoming an illustrator lay in tatters. 

Having already clinched a book deal, which had been her ambition since childhood, Jessie’s future career plans had seemed to be in the ascendancy. 

But from that moment, and with her subsequent diagnosis of Multiple Sclerosis (MS) at the age of only 22, Jessie was forced to delay her ambitions – but was adamant she would never give up. 

And now, eight years on, the determination and positivity which characterise Jessie’s everyday life have resulted in her publishing her first illustrated colouring book for children. 

Already a published author, having created her highly successful My Enabled Warrior Tracker – to help empower people with chronic conditions in accurately documenting their feelings and symptoms – this is the first to showcase Jessie’s talent for illustration. 

The book is being sold via Amazon, and marks the culmination of a long journey to this point – and the beginning of a new chapter as a published illustrator. 

“I have always believed in finding a way to do things, even if they most direct way isn’t achievable,” says Jessie. 

“There have been so many challenges along the way, but you have to believe you’ll get there and do all you can to make that happen. 

“Positivity and belief in yourself is so important, and that runs through my colouring book – the affirmation statements like ‘I am strong’ ‘I am awesome’ and ‘I am beautiful’ are in here, things like that can’t be said from too early an age.” 

Following the colouring book, Jessie has many ambitions for what comes next – but realising the potential challenges which may lie ahead as a woman with MS, Jessie is planning now for her future career. 

“I had a flare-up recently which was really bad, and it made me think what would happen if I couldn’t use my hand in the future, if I could no longer do my illustrations,” she says. 

“So I’m doing as much as I can now, using my creative skills while I’ve got the ability to use them, and will plan for the future so I have work to sell and can continue my career whatever happens.” 

Having seen global success with My Enabled Warrior Tracker, Jessie has gone on to create versions which work with the specific needs of people with fibromyalgia, rare diseases, ME and EDS and challenges with mindset. 

Building on her graphic design roots, the creation of tracker sheets has proved invaluable to those who need to keep track of information between medical appointments. 

“You might have appointments every month or every three months, and you’re expected to recall how you have felt during that time, how your symptoms have presented,” says Jessie, also creator of the acclaimed DISabled to ENabled podcast and Enabled Warriors online group.

“You’re relying on recall bias, which is natural, as you probably won’t be able to describe exactly how you have been during the past several weeks. But that then affects what happens from then on.

“The trackers are proving really useful. The most recent one was the mindset tracker, which was helpful for people during lockdown in creating a positive mindset. I’m so pleased they are helping people.” 

As she plans for her future in illustration, Jessie is considering a host of options. 

“There are so many different pathways I could go down and things to consider, I’ve flipped between so many ideas. I’d like to look at working with an illustration agent, and also potentially licensing my work – but I’m hopeful that selling with Amazon will be a good start,” she says. 

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MS

MRI could predict later-life disability in MS

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New MRI techniques to show what is happening in the brains of people with multiple sclerosis (MS) could have the potential to predict disability from the early stages of their condition, new research has revealed. 

Through assessing microscopic changes in the brain at the earliest opportunity using MRI, scientists now believe this has the potential to indicate the level of disability the person may face in the future. 

The study by University College London (UCL), funded by the MS Society and Rosetrees Trust, combined advanced MRI techniques to show the smallest of changes happening in the MS brain. 

The team at the Queen Square MS Centre observed 42 people who had experienced their first MS symptoms in the previous three months and, compared to healthy volunteers, found their MRIs showed alterations in sodium concentration, a fundamental element for our brain function and the brain microstructure.

Crucially, the scale of these changes corresponded to subtle signs of disability, like slower walking speed and higher EDSS score, suggesting these previously undetectable changes could be contributing to such disability.  

If they also prove to be related to disability build-up, they could even be used to more accurately predict how someone’s MS will affect them in the future – though further longitudinal research on the 42 subjects is still going on.

MS can cause a range of symptoms, including fatigue, vision problems, numbness, pain and mobility problems, but is unpredictable and different for everyone in its development. 

The uncertainty of how the condition will manifest – both in terms of symptoms and severity – is often a major cause of concern for those affected. This uncertainty depends also on the fact that MRI, the primary tool used to diagnose and follow up MS patients, can only see a small part of the complex MS damage that occurs.

However, through the new research, published today in Brain, the potential of MRI could be exploited in much greater ways going forward. 

“MRI plays a vital role in how we diagnose MS and monitor it throughout someone’s life, and that has been the case for decades. But traditional techniques don’t tell us the whole story,” says Dr Sara Collorone, a neurologist and clinical research associate at UCL and author of the study. 

“This development is exciting because these new techniques go way beyond what we can do with conventional MRI, allowing us to see damage and alterations in brain tissue that we haven’t seen before in early MS. 

“This approach can provide valuable information about early MS damage that previously has only been obtainable through post-mortem studies on brain tissue from people with advanced MS. 

“By providing clues on how MS will progress, it is hoped these techniques will lead to a better long-term prognosis for the newly diagnosed – as well as greater certainty for the future.”

The conventional MRI findings currently used in practice are unable to show the clinical variability of MS. White matter lesions in the brain and spinal cord are visible as white spots on an MRI scan, but these white spots provide comparatively little information on the degree or scale of damage, and the study found no association between white matter lesions and disability.

Disability in MS is driven both by inflammation and nerve loss, with the latter causing the gradually worsening, irreversible disability seen in progressive forms of MS. The alterations visible using these new techniques are indicative of damage to nerves, and may prove to be a very early indication of the likelihood of progressive disease. If this is confirmed in further long-term studies, clinicians could translate that knowledge into more targeted use of treatments in early MS, improving patients’ prognosis. 

Such understanding could be particularly important if neuroprotective drugs start to emerge – a goal the MS Society’s Stop MS Appeal is striving towards within the next five years.

Dr Emma Gray, assistant director of research at the MS Society, adds: “MS is incredibly unpredictable, and giving people greater certainty about their future is one of our top organisational goals. We’re really proud to have funded this research, which could help provide that certainty.

“The next step is for the team to continue the follow-up study of this group of people living with MS, and confirm whether there is a link between these changes and how someone’s MS develops. 

“If the changes can predict later disability this will be a game-changer for how the condition is managed, how future clinical trials are run, and eventually give people with MS the information they need to plan for their future.”

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