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COVID symptoms create surge in demand for charity’s support

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Smell loss if one of the long-lasting symptoms of COVID-19

A charity which supports people who have lost their senses of smell and taste has seen global demand for its services raised near 70-fold amidst the pandemic, with the symptoms being two of the key indicators of COVID-19.

Fifth Sense has worked nationally since its creation in 2012 to offer support and signposting to those directly affected by smell and taste loss, supporting hundreds of people during that time, as well as educating society on the vital role the senses play in our lives and how keenly their loss is felt.

However, over the past few months, the charity has been deluged with enquiries from around the world after smell and taste loss became commonplace through contracting COVID-19, and they were confirmed as being among the main symptoms of the deadly virus.

Fifth Sense quickly reacted to the need by launching an array of online resources for people, taking its in-person local groups online and creating new virtual groups and advice forums to help engage with the global community of people who have lost their smell and taste.

Having been run by founder Duncan Boak and volunteers – backed by the expertise of leading medical figures including Professor Carl Philpott, Director of Research and Medical Affairs at Fifth Sense – since its inception, the charity took on its first member of staff, director of development and operations Nina Bleasdale, only weeks before the pandemic hit the UK.

It has since added marketing officer Daniel Scott in June to help it keep pace with surging demand and help continue to develop new ways to engage with those who need it.

“We have punched above our weight from day one with our delivery model, where we bring on board people who want to be part of what we do and we use this experience and professional skills to make a difference,” says Duncan, who lost his sense of smell through a brain injury.

“From the outset, we have worked with Carl to make sure the information we are providing is of the highest quality and is credible, our credibility is now widely recognised.

“That has enabled us to create what we have and has allowed us to accommodate the volume of demand we have seen. Ordinarily, we would get 1,000, maybe 1,500, visitors to our website a day – that has gone up to 70,000.”

“Our website has been a resource for so many people in terms of giving information and signposting and being there when people need us,” says Nina.

“And as well as providing them with the resources they need, the opportunities to have contact with other people who are also experiencing the loss of smell are hugely important. I don’t think people can realise what the reality of that is like in everyday life.

“Even one ENT consultant we work with told us they didn’t truly understand what it was like until they experienced it themselves, even though they had treated patients with it for years. But that’s why we are so important to so many people, because we do understand.”

Duncan continues: “When I lost my sense of smell in 2005, I spent the next six-and-a-half years thinking I was the only person on the planet with this, so I know what people are going through.

“There’s the classic line ‘There’s nothing that can be done’ and while that may be true from a clinical perspective, the value of coming into contact people and sharing experiences is more valuable than I can describe. In that way, there is so much that can be done.

“I wish what we have created had been there for me in the early days, but it’s great to know we are supporting so many others who probably feel similarly alone until they come to us.”

Fifth Sense is now operating a number of online forums to enable it to bring people together.

“We’ve had people from around the world, many of whom have lost their taste and smell through COVID, but equally others who have lived with this for years but have never done anything about it, or more probably because there was nowhere for them to turn 20 or 30 years ago,” says Nina.

“It’s great they have found the confidence to come to us and end the isolation and disconnection they’ve experienced, and we’ll continue to make conversations and connections happen.”

However, going forward, while it will continue with its online offering to unite its global community, it is committed to continuing its presence on local levels.

“Face to face engagement will continue to have immense power and value. We have a number of local hubs and there is something really important about that. Going forward, more people will be working at home, they’ll be travelling less which will positively impact climate change, and people will spend more time in their local communities as a result,” says Duncan.

“I think these strong links and affinities many people now have with their local communities will mean our local hubs will be more important than ever. Local people supporting each other has been vital during the pandemic and will continue to be so.”

News

Spinal cord patients see improvement in motor functions in new trial

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After being injected with stem cells, patients reported an improvement with their motor skills

Intravenous injection of bone marrow derived stem cells (MSCs) in patients with spinal cord injuries led to significant improvement in motor functions, new research has found.

For more than half of the patients, substantial improvements in key functions — such as ability to walk, or to use their hands — were observed within weeks of stem cell injection, the study from Yale University reports.

No substantial side effects were observed, they added.

The patients had sustained non-penetrating spinal cord injuries, in many cases from falls or minor trauma, several weeks prior to implantation of the stem cells.

Their symptoms involved loss of motor function and co-ordination, sensory loss, as well as bowel and bladder dysfunction.

The stem cells were prepared from the patients’ own bone marrow, via a culture protocol that took several weeks in a specialised cell processing centre.

The cells were injected intravenously in this series, with each patient serving as their own control. Results were not blinded and there were no placebo controls.

Yale scientists Jeffery D. Kocsis, professor of neurology and neuroscience, and Stephen G. Waxman, professor of neurology, neuroscience and pharmacology, were senior authors of the study, which was carried out with investigators at Sapporo Medical University in Japan.

Key investigators of the Sapporo team, Osamu Honmou and Masanori Sasaki, both hold adjunct professor positions in neurology at Yale.

Professor Kocsis and Professor Waxman stress that additional studies will be needed to confirm the results of this preliminary, unblinded trial.

They also stress that this could take years, but despite the challenges, remain optimistic.

“Similar results with stem cells in patients with stroke increases our confidence that this approach may be clinically useful,” notes Professor Kocsis.

“This clinical study is the culmination of extensive preclinical laboratory work using MSCs between Yale and Sapporo colleagues over many years.”

“The idea that we may be able to restore function after injury to the brain and spinal cord using the patient’s own stem cells has intrigued us for years,” adds Professor Waxman.

“Now we have a hint, in humans, that it may be possible.”

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Inpatient rehab

Family hail ‘amazing’ care at neurorehab centre

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Fraser Millar and his family

A family whose beloved husband and father had a stroke are fundraising for the neurological centre where he currently resident, after being impressed by the “amazing” standards of care.

Fraser Millar needed life-saving brain surgery in November last year and is now in Woodlands Neurological Care Centre in York, receiving intensive rehabilitation to aid his recovery.

Woodlands, a level two neurorehabilitation centre which is part of Active Care Group, specialises in maximising recovery and independence and sets patients rehabilitation goals that promote re-enablement and enhance quality of life.

Now, Fraser’s family – wife Debs and children Alex and Ryan – are fundraising on behalf of Woodlands, to purchase therapy equipment which will benefit people who are undergoing rehabilitation at the centre.

To remember the long walks Fraser and Debs used to enjoy so much, Debs and daughter Alex are walking the equivalent 230 mile distance from York to Perth in Scotland, where Fraser is from.

Having set a target of £500, the total now stands at over ten times that amount, with over £5,680 being raised at the time of writing.

Family, friends and work colleague donations have come from as far afield as Canada and Australia, from people inspired by the Millar family’s story, which has been widely shared on social media and is touchingly accompanied by the hashtag #comeondad.

“We feel the team at Woodlands have become extended members of our family, they’ve been amazing,” says Alex.

“One of dad’s hobbies is cooking, he’s an amazing chef and loves to watch cookery programmes on TV in the kitchen at home. Woodlands staff noted this on his arrival day and within 20 minutes dad was watching The Hairy Bikers in his room and he continues to watch various culinary programmes!

“Staff there make a huge effort to make dad comfortable, take great care of his needs and interact with us brilliantly, we’re so thankful and extremely happy he’s having the best care.

“We’re raising money to say a huge thank you and while we’re doing it for dad, it’s great that it will benefit other patients too.”

Debs and Alex initially set a target of completing their walk by March 7, which is Debs’ birthday, but typical of their determination, they had already finished by February 24. Their fundraising target has also been vastly exceeded, with donations continuing to come in by the day.

“We initially thought our family and close friends would help with our fundraising cause, but the charity page was quickly circulated and within hours are target was met and the figure kept rising, we couldn’t believe it! We are incredibly thankful for every donation,” says Alex.

“We feel so touched and overwhelmed to have had such amazing support for dad. We walked the long miles but the generous donations kept us going and without them we wouldn’t be in the position to present Woodlands with the equipment they deserve.”

To add support to the Millar family’s fundraising on behalf of Woodlands Neurological Care Centre, visit https://www.gofundme.com/f/woodlands-neurological-rehabilitation-centre

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News

Could sesame seeds help protect against Parkinson’s?

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There is currently no cure of Parkinson's, but research like this could help change that

A chemical commonly found in discarded waste from the sesame seed oil manufacturing process could have protective effects against Parkinson’s disease, new groundbreaking research has found.

Sesaminol, abundant in the empty shells of sesame seeds which are discarded after the fatty oils are extracted, could have a role to play in protecting against neuron damage in the brain, researchers from Osaka City University have revealed.

“Currently there is no preventive medicine for Parkinson’s disease, we only have coping treatments,” says OCU Associate Professor Akiko Kojima-Yuasa.

Professor Kojima-Yuasa led her research group through a series of experiments to understand the effects of sesaminol on in vitro and in vivo Parkinson’s disease models.

Parkinson’s disease is caused when certain neurons in the brain involved with movement break down or die due in part to a situation called oxidative stress – neurons in the brain come under extreme pressure from an imbalance between antioxidants and reactive oxygen species (ROS).

The team found in cell-based in vitro experiments that sesaminol protected against neuronal damage by promoting the translocation of Nrf2, a protein involved in the response to oxidative stress, and by reducing the production of intracellular ROS.

In vivo experiments brought Professor Kojima-Yuasa’s team what the University have hailed as equally promising results.

The impairment of movement due to Parkinson’s disease is the result of damaged neurons producing less dopamine than is naturally needed.

The team showed that mice with Parkinson’s disease models show this lack of dopamine production. However, after feeding the mice a diet containing sesaminol for 36 days, the research team saw an increase in dopamine levels.

Alongside this, a rotarod performance test revealed a significant increase in motor performance and intestinal motor function.

With the first-ever medicine for Parkinson’s disease potentially being the naturally occurring food ingredient sesaminol, and this ingredient being found in the naturally occurring waste of the sesame seed industry, Professor Kojima-Yuasa and her team are ready to take their work to the clinical trial phase and connect the consumption/production chain in a way that, as she puts it, “prevents diseases with natural foods to greatly promote societal health.”

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