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Every year on  12 May,  individuals, support groups, and health organisations around the globe observe World Fibromyalgia Day. This significant date, which also marks the birthday of Florence Nightingale – a historical figure believed by some to have suffered from a similar chronic condition – serves as a crucial opportunity to raise awareness and understanding of fibromyalgia.   Fibromyalgia is a complex and often debilitating chronic illness characterised by widespread musculoskeletal pain, persistent fatigue, sleep disturbances, and cognitive issues, commonly referred to as "fibro fog." Millions of people worldwide live with this invisible illness, frequently facing misunderstanding and challenges in diagnosis and treatment.   The primary aim of World Fibromyalgia Day is to bring this condition into the spotlight, fostering greater public and medical community awareness. It's a day for advocating for improved patient care, enhanced support systems, and increased funding for research into the causes, mechanisms, and effective treatments for fibromyalgia.   World Fibromyalgia Day also often shares its observance with International ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and other Chronic Immunological and Neurological Diseases (CIND) Awareness Day, highlighting the interconnected struggles faced by those with these often-misunderstood conditions. The day emphasizes the need for compassion, recognition, and a commitment to improving the quality of life for everyone affected by fibromyalgia.   Many of our members living with this condition benefit from regular Hyperbaric Oxygen Therapy and Neurophysiotherapy here at The Brightwell. Benefits, through reduced inflammation and movement,  include increased flexibility, reduced pain, reduced fatigue and improved sleep patterns. For further information please visit www.thebrightwell.org.uk/oxygen-therapy www.thebrightwell.org.uk/physio

Adapted from overcomingms.org/program/sunlight-vitamin-d The Brightwell has been developing  relationships with Overcoming MS and we hope you find this article useful.   There is strong evidence that vitamin D levels influence both the risk of developing MS and how the condition progresses. Overcoming MS recommends that people with MS supplement with between 4,000 and 10,000 units of vitamin D per day. To ensure the right dosage for your individual needs, they advise working with a healthcare practitioner to test your vitamin D levels and develop a personalised supplementation plan. Factors such as sun exposure, season, and location can all influence how much vitamin D you need. Vitamin D and MS: the evidence Vitamin D plays a crucial role in MS, and research continues to highlight its impact on disease progression and overall health. Here’s what the latest evidence tells us: Higher vitamin D levels at diagnosis are linked to slower disease progression and fewer symptoms. Maintaining good vitamin D levels is associated with a lower risk of new brain lesions. Low vitamin D levels are associated with a higher risk of relapses, greater disability, and more disease activity. Extremely low vitamin D levels (below 50 nmol/L) may double the risk of developing MS. How much vitamin D should people with MS take? Maintaining healthy vitamin D levels is essential for people with MS, and experts widely agree on its importance. In many parts of the world, sunlight is too scarce, or UVB levels are too low to produce enough vitamin D naturally, making supplementation necessary. In fact, an estimated one billion people worldwide are vitamin D deficient. Standard recommended daily intakes (RDIs) don’t account for the specific needs of people with MS, who often require higher doses to reach and maintain adequate levels. Overcoming MS recommends testing your vitamin D levels as soon as possible after diagnosis. This can be done through a general practitioner or an online testing kit. If levels are very low, a one-off megadose of vitamin D3 (eg, 600,000 units under medical supervision) may be used to quickly restore levels, followed by regular daily supplementation. General recommendations: A healthy vitamin D level is thought to be between 100–150 nmol/L. There is no single ‘good for everyone’ dose, but common recommendations include: 4,000 units per day – a common amount recommended by UK neurologists. 6,000–10,000 units per day – may be needed to maintain optimal levels. It’s always best to work with your doctor to test your vitamin D levels regularly and find the right dose for you. If testing your vitamin D levels isn’t possible right now, you can still take steps to maintain healthy levels by taking a moderate daily dose and maximising safe sun exposure. Some healthcare providers, research studies, or public health initiatives offer free or discounted vitamin D testing. It’s worth checking with your GP, healthcare provider, local MS society, or pharmacy to see if any options are available. What are the research gaps? Research into vitamin D and MS is complex, and randomised controlled trials (RCTs) have not yet definitively proven that supplementation leads to better outcomes. Adding to the complexity, some studies show conflicting results—for example, while some suggest that higher vitamin D levels are linked to reduced relapse rates, others have not found a clear effect. These differing findings highlight the nuanced role of vitamin D in MS. It’s also important to consider that different types of studies have their own strengths and limitations, which is why Overcoming MS review multiple sources of evidence when making their recommendations. A Guide to Vitamin D If you want a quick guide to understanding Vitamin D on the Overcoming MS Program you can download this one below. It delves into the key components, benefits and practical tips that can guide you on your way to making the lifestyle changes that will help you to Live Well with MS.

Photo shows Karen Parsons and Brightwell CEO, Doro Pasantes Karen Parsons has been a member of The Brightwell Community for many years, originally joining the old Centre in Nailsea in 2005. Karen has wanted to  share the story of her very challenging diagnosis journey, that has spanned over 40 years, in the hope that it may help others going through a similar experience firstly to know they are not alone, and not to lose hope and secondly to empower others to find their voice and advocate for their truth. The  way that Karen was treated over many years is truly shocking, but her journey  is a modern-day David and Goliath story. An account of how one very brave and determined lady took on the establishment to overcome years of prejudice and misdiagnosis. Karen who is now 60 had a distressing start in life when she lost her Mother at only six years of age.  Nobody explained to her what had happened to her Mum, just that she was no longer around. This was followed by an very challenging and unhappy childhood which had a lasting impact on her. This period was used as an excuse for “psychosomatic” symptoms by more than one doctor over the period of her illnesses! At a young age, Karen had episodes when she was unable to walk, had headaches, balance issues, sight problems and struggled academically. She was able to bounce back from these episodes and more or less carry on the same as other teenagers. Age 21, she fell pregnant with her first child and didn’t have a great pregnancy and some of the symptoms reappeared. She was diagnosed with preeclampsia and had to have a c-section and noticed that recovery following her daughter’s birth was very slow, which was put down to the anesthetic. Unfortunately, she then suffered with post-natal depression, but not realising what this was at the time, she didn’t seek any help. Symptoms following her second baby were not as severe for Karen. Aged 38, Karen’s health rapidly declined and she  underwent a number of significant operations including an appendectomy and a hysterectomy. Unbeknown to anyone at that time, every time anesthesia was used, it was causing Karen more and more harm. These procedures resulted in loss of speech, reduced vision, hearing loss and reduced mobility. Karen had to stop working at this point. Despite numerous scans, both private and NHS consultations Karen was repeatedly told that there was nothing physically wrong with her and that her symptoms were  psychosomatic.  At one time, when her mobility was so affected that she was not able to walk, she was told that, there was no reason for this and that she should “just walk”. Karen’s sister had come across the Therapy Centre in Nailsea and suggested to Karen that she gave them a call.  Karen took what felt like a huge step at the time for fear of being disbelieved and ultimately disappointed.  In fact, she says it was the total opposite,  “I was understood and supported for the first time in a long while” and she was able to commence various therapies to help her increasingly numerous symptoms. By this point she had seen neurologists at the Bristol Royal Infirmary and Frenchay Hospital and continued to feel that no one was listening to her and taking her symptoms seriously, she felt that several of the Consultants were rather confrontational. Eventually, Karen was diagnosed with a Functional Neurological Disorder (FND) with no treatment plan. Over the years following diagnosis, Karen’s symptoms continued to worsen including the very upsetting condition of incontinence. Even after very invasive tests that proved Karen’s bladder was not working at all, she was still not receiving any effective treatment and was pushed from pillar to post, without any positive solutions. Throughout this ordeal, Karen was supported in particular by her sister and her children as well as by the Centre staff and volunteers. By 2020, despite the situation with her bladder and bowel becoming extreme, increased fatigue and mobility problems, Karen carried on with her own research and investigations and was convinced her symptoms were not associated with FND. She was referred to a Specialist in Urology and Neurology and was put through a number of intrusive and invasive tests. She was told that she had Fowler’s Syndrome, which results in the inability to pass urine. Again, there was no joined up thinking and all her other symptoms were ignored. Karen kept insisting that her symptoms were wider than her latest diagnosis, until she was contacted by a different consultant in London.  When Karen arrived he watched her walk into his office, he asked about her complexion and skin, what her siblings skin was like and about her flexibility.  He also enquired about previous anesthetics she had undergone and said that he thought she had Ehlers-Danlos Syndrome (EDS).  This encompasses a group of 13 different genetic conditions that affect the body's connective tissues, which provide support, structure, and stability to various parts of the body.  There is no overall treatment or cure for this collection of health problems, but many of the issues can be dealt with individually. The more Karen read up on the condition the more sense everything started to make. Despite this confirmed diagnosis  there was no apology from any of the previous specialists that Karen had seen, which has made her feel particularly frustrated.  Likewise, there has been no recognition for the years of pain and suffering that Karen lived through affecting every aspect of her life. Yet Karen remains, stoic and wants to move forward with her life. Karen is an amazing craftswoman making beautiful items with paper including  all the flower table decorations for her younger sister’s wedding as well as all the department gonks you will see around the Centre.  She also makes beautiful craft ornaments for her community of neighbours and to raise money for charity. Over the last  20 years that Karen has been using the Centre she has always been involved in the  Summer and Christmas Fairs and fundraising , in whatever way she can for the Charity. She also has the best comedy timing, even when she is talking about her challenging experiences she makes people around her laugh out loud.  Doro, our Brightwell CEO has suggested that Karen should look at doing a stand up comedy course – because she would be amazing at it!. Karen always has time for other members at the Centre. She hopes that her story may inspire others to advocate for themselves no matter how many times they are misdiagnosed or not listened to.  Standing up for yourself should not be seen as “confrontation” or “fighting the system”. Everyone deserves to be heard and feel cared for. The ultimate goal is that Karen’s experience may help to raise awareness amongst clinicians and broaden the learning of new doctors, to realise that the person in front of them has to be listened to and treated holistically.  They are treating the person as a whole not just the condition. We would like to thank Karen very much for being so open and honest with us in deciding to share her story. Karen asked us to include some of her thoughts about the Brightwell. These are such warming and heartfelt words… “In my opinion, from my experience the staff and volunteers become your friends and  part of your family. Everyone is always there to help and support you in many ways, physically, emotionally and practically, helping with access to external services, benefits etc. They are the people I laugh with and share stories with and at times a shoulder to cry on. I always remember when Angela advised me to try oxygen and to  use the chamber. I was reluctant as I did not think I would see any improvement. How wrong I was! Oxygen therapy is a lifeline for me, it helps me manage my fatigue and my cognitive function and energy is always increased after oxygen. My ability to heal from operations is also increased. I always feel better and see a benefit after an oxygen session. The staff and volunteers in the oxygen suite are always on hand to help you in any way they can, assisting you with access whether that be walking or via a wheelchair. They understand my condition and my individual needs and always support me with this. I’ve had counselling at the Centre, which was my life saver. It allowed me a safe, secure and comforting place to tell someone my feelings, good or bad and offered me incredible support to overcome issues past and present and help me see a way forward both with my physical condition and with my mental health. The physiotherapy offered at the centre is excellent and there is a wide choice of options, from one to one appointments through to group exercise classes and sessions. I have used the services in the past and really benefited from them. The Brightwell Centre is a great place that welcomes all with open arms. It helps me and others make the best of our lives, it offers compassion, support, advice, services and friendship. I can honestly say that the Brightwell Centre, the staff and services available have saved me and it continues to do so” At The Brightwell, we do not offer medical advice, but we do have an experienced team who can listen and support you including therapists, counsellors and clinics to address chronic and neurological conditions. Please see the following pages on our website for more help www.thebrightwell.org.uk/therapies www.thebrightwell.org.uk/oxygen-therapy www.thebrightwell.org.uk/physio www.thebrightwell.org.uk/therapies/specialist-clinics www.thebrightwell.org.uk/therapies/fes-clinic You can also phone us on 01454 201686 or email hello@thebrightwell.org.uk

On 8 May 2025, we mark the historic 80th anniversary of VE Day, with the peoples, families and communities of our great nation coming together to unite and celebrate 80 years of peace since the end of World War II in Europe that so many millions gave the ultimate sacrifice to achieve. VE Day 80 is not only a tribute to those who fought for the freedom we all enjoy today, but also a powerful reminder of the resilience and unity that have defined our country ever since. Everyone is encouraged to take part and gather in the streets, gardens, town and city halls, clubs and pubs, and at home too, and be part of this anniversary providing a day of joy, reflection, and celebration, as part of the Commonwealth’s 2.4 billion people, reaffirming our commitment to world peace, ensuring future generations understand and cherish its value. At 9am Town Criers will undertake the VE Day Proclamation as the VE Day 80 flags are raised, and at 12noon, Pipers will play a unique tune especially written for the occasion entitled ‘Celebratum’ from the top of the UK’s four highest Peaks. At 6.30pm, Cathedrals and Churches will ring out in united celebration throughout the nation, and at 9.30pm over one thousand beacons and hundreds of Lamp Lights of Peace will shine throughout the United Kingdom, Channel Islands and the Isle of Man, with the flames from them all, representing the ‘light of peace’ that emerged from the dreadful darkness of war. Across the nation, people will be coming together from all walks of life - in city and town squares to quiet village greens, and all other manner of locations at this special and unique one moment in time and sing the great British Hymn ‘I Vow To Thee My Country’, standing side by side in gratitude, honouring the many sacrifices that secured our freedom. “Together, we honour the past and celebrate a future built on unity, hope, love and peace". The Brightwell will be open as usual on Thursday, and we will be observing the 2-minute silence at 12 noon.

We are proud to be a member of the Neuro Therapy Network.  NTN  are once again partnering with a group of MS charities to deliver a joint campaign for MS Awareness Week. This year’s theme is  #MSConversations  encouraging people to open up about the different type of conversations they encounter, whether it’s with family and friends, employers or healthcare professionals.One of the great benefits of  being part of The Brightwell Community is that there is always someone to have a frank and open conversation with. These conversations could be with one of our members of staff, a therapist or a knowledgeable volunteer, but frequently  these conversations take place with other members. It is so important to talk about your condition and how you are feeling, what living with MS means and support you might need. Please use this MS Awareness Week to talk to others about your symptoms, concerns or your coping strategies and any issues that your experience from living with this condition. Maybe have a talk with a friend or family member that you have not opened up to before . #MSConversations

Our CEO Doro Pasantes and Geoff Mayell, Chair of Trustees cordially invite you to attend The Brightwell’s 2025 AGM on Thursday 22 May at 2pm to be held at the Centre or via Zoom. This year we are celebrating  our 40 year Celebration and this is being marked by a number of significant events including this year’s AGM. There are a number of important topics to discuss and it would be great to have as many members attend as possible. This invitation is open to all Members, Staff, Volunteers, Supporters and Centre Friends. The agenda and supporting information will be sent out to members shortly. The meeting will be followed by Beverages and Refreshments from the Café. If you are able to attend in person or would like to be sent a link to join via Zoom, please advise Reception by calling 01454 201686 or email hello@thebrightwell.org.uk . We very much look forward to welcoming you to this year’s AGM.

Time has been flying by as usual and it has now been 8 months since we launched our new shop area at The Centre! It has been a great success, with members getting some great bargains and unique finds whilst helping to raise funds to support the Charity’s work. Thank you for all your donations, we have had some really lovely bits to sell.   We are often asked by people what sort of items we would be happy to receive for the shop, so we thought it would be a good time to set out what items would be helpful to us:   We are very happy to receive donations of items that are in clean, unsoiled, and in sellable condition, such as:   Clothing Shoes Handbags, purses, or wallets Jewellery Homeware/decorative items (not kitchenware) Books Games and puzzles (that are complete and in good order)   We are also very happy to receive donations of unopened gift sets, boxed chocolates or biscuits, or unopened alcohol that can be used for raffle prizes.   Things we are unable to accept:   Furniture items Electrical items (anything with a plug) Mobility aids or custom-made mobility items Used or opened health or beauty products DVDs, Blu-Rays, CDs   Please take these sorts of items to alternative charity shops or for recycling.   Please use the Recycling Bin in the car park area for clothes and shoes that are not suitable to sell in the shop, we will receive money for these items that are sold by weight.   If you are unsure about whether an item is suitable for donation, please check with Reception or staff in the office and we would be happy to help.   We would like to thank Janet and  Valerie  for all their help in sorting, pricing and displaying these donated items – the Shop area always looks great!   Thank you to everyone who has donated items and purchased from the shop. All proceeds from every item sold go back to the Charity and we are very grateful for your continued support!   Happy shopping!

Hi, I’m Lara, the Events, Marketing, and Communications Officer on the Fundraising team here at The Brightwell. I joined the Centre in January 2024, though my connection to the charity goes back much further - my Auntie joined as a member back in the Nailsea days, so The Brightwell has always had a special place in my heart. I come from a big family and grew up in Bradley Stoke. My working life began at 15, selling beauty products in retail. I saved up to travel around Southeast Asia when I turned 19 - a dream trip filled with sunshine, beaches, elephants, and vibrant cities! After my travels, I studied Marketing, Advertising, and Branding at University in Gloucester. Initially, I planned to bring my skills back into the beauty retail world, but I soon realised there are only so many ways to convince someone to buy a lipstick! After graduating, I had my son, Ellis, who’s now almost two. He’s my little whirlwind - cheeky, full of energy, and always keeping me on my toes. When my maternity leave ended, I was eager to finally apply my degree in a meaningful way. That’s when I discovered this role at The Brightwell. It felt like the perfect opportunity, especially given my personal connection to the charity. It’s been such a full-circle moment, from attending the fayres as a child to now helping organise them! In my role, I coordinate and run fundraising events such as the Charity Abseil and Fayres, as well as our in-centre favourites like Bingo and Quiz nights. I also design our marketing materials, both for in-house use and external promotions, help manage social media and update the website. This year is an exciting one for us as we celebrate our 40th Anniversary - watch this space for what’s to come! Our annual Charity Abseil is just around the corner in May at the Village Hotel, and we have some amazing members taking part. We’d love to see you there cheering them on! I look forward to meeting more of you at our events or around the Centre soon!

We are delighted to announce the trial of a completely new style of class for us here at The Brightwell. This new session has been developed by Millie Rutherford, our Rehabilitation Therapy Specialist. What is MIIT? Interval Training: Instead of exercising at a steady rate for pace, MIIT involves alternating between short bursts of planned exercise and brief periods of lower-intensity activity or complete rest.   Every exercise has been designed taking int account the needs of those living with a neurological or chronic condition. Who is this MIIT class suitable for? This class is aimed at those members with higher mobility and relatively good balance. Maybe, you are newly diagnosed or looking for a more challenging class but find classes elsewhere too tiring or unsuitable for your condition. What will the class include? Each 30 minute session will include: Upper Limb,  Lower Limb and Core  exercises (standing) Mixed exercises  to allow for muscle groups to rest Use of weights/dumbbells Interval training – 30 seconds on, 30 seconds rest Including Warm Up Upper Limb Exercises (standing) Core Exercises (standing) Lower Limb Exercises (standing) Cool Down When is the class? Every Tuesday 8.45am to 9.15am. If this class is popular and there is a demand, a face to face option will be considered. How much is the cost? The suggested contribution for members is £8 per session or £50 for a block of 10 sessions booked in advance. How do I join? Call Reception on 01454 201686 to book.  Millie will contact you to discuss the class further and will send you the link to join the class.

Tim Phillips, MD of Alchemy Systems is planning to run the Thames Path 100 to raise funds for The Brightwell. The Brightwell have a long established relationship with Alchemy Systems as they provide IT support for the Charity’s hardware and software packages. The TP100 is a 100 mile continuous trail race along the Thames Path from London to Oxford. The 100 mile course is a marked point to point race which takes runners from Richmond in South West London to the centre of Oxford. The course follows the meandering route of the Thames against it's flow and is flat and fast with the majority on groomed paths/ trails and paved pathway. There are some truly stunning sections of the route showing off the best of English riverside scenery and life on the Thames. This will be a grueling challenge. Tim has run a competitive 100km race in 2022, but this race presents many more challenges in terms of extra distance and continuous running! The race starts on 3 May. The event is organised by Centurion Running who will be offering support along the  100 mile route. Tim’s  fundraising target is to raise £1,000! You can support Tim by donating on his Just Giving page please click the link below. Tim Phillips is fundraising for MS Therapy Centre at Bristol Everyone in the Brightwell Community would like to give a massive heartfelt thanks to Tim and wish him all the best for a safe and successful completion of this awesome endeavor. Thank you Tim!

On Sunday 6 April, five brave individuals stepped up to the challenge of the London Landmarks Half Marathon, running proudly for The Brightwell! The London Landmarks Half Marathon is famous for its stunning route that winds past some of the city's most iconic sights. Libby, Becky, Nic, Hope, and Robbie took on the challenge running in support of The Brightwell. Not only did all five smash their personal time goals, but they also exceeded their fundraising targets - together raising an incredible £3,763! Libby after running the Half Marathon Libby, who manages a local gym, has been a long-time supporter of The Brightwell and decided to combine her passion for the charity with a personal challenge. The buzzing crowds, including her proud parents cheering from the side lines, gave her a big boost on the day. Her efforts paid off - she raised a fantastic £760! The experience has left her feeling inspired, and she’s already on the lookout for her next race. Ultra Marathon Runner Robbie also ran for us as training for his next big race! He raised an amazing £658 for the Centre. Becky during the Half Marathon Becky's twin sister Lucy is a member of the Centre and attends for Oxygen Therapy. Becky really wanted to give back to the Centre for the support provided to her sister, so took on the challenge of the Half Marathon and raised £1,110. Becky smashed her fundraising target and exceeded her expected running time. Lara, The Brightwell’s Events and Marketing Officer, was there to cheer on her mum, Nic, and friend, Hope, as they ran to support the Centre, raising an impressive £1,233. The Brightwell has been a part of their lives for many years - Lara’s aunt was a member during the charities early days in Nailsea and continued her involvement after its move to Bradley Stoke, making this fundraising challenge all the more meaningful. The race day was filled with sunshine, smiles, and plenty of Brightwell flag-waving among a sea of charities, making it a truly memorable occasion. A huge thank you to all of our incredible 2025 London Landmarks Half Marathon runners! We’re so grateful for your dedication and support. Be sure to keep an eye out for the running events we’ll be involved in throughout the year - and if you’d like to join Team Brightwell in the future, we’d love to hear from you!