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MS AWARENESS WEEK – 18TH – 24TH April – MS can be tough, and for many people talking about it can be challenging. Whether you’re opening up to a friend after being newly diagnosed, or finding the right words to describe symptoms to an employer. Sometimes it feels easier not to say anything at all.


That’s why for MS Awareness Week 2021 they spoke up using #LetsTalkMS. Scroll down to find resources to help you to feel confident about speaking up. And read stories of how others found their voice. Help Break the silence around MS.

The MS Society teamed up with Robin (who has MS) from the comedy group Noise Next Door. With your help, they wrote a song about life with MS. They are always happy to share MS stories on their social channels and blog.

Any help in any way could help towards stopping MS.

Take action and change lives.

Too many people affected by MS in the UK have to fight for the treatments, services, care and support they need.

Together we can change that.

Do you have a question about MS campaigns? Get in touch at campaigns@mssociety.org.uk

Multiple sclerosis (MS) is a condition that affects your brain and spinal cord. In MS, the coating that protects your nerves (myelin) is damaged. This causes a range of symptoms like blurred vision and problems with how we move think and feel.

Once diagnosed, MS stays with you for life, but treatments and specialists can help you to manage the condition and its symptoms.

More than 130,000 people in the UK have MS. In the UK people are most likely to find out they have MS in their thirties, forties and fifties. But the first signs of MS often start years earlier. Many people notice their first symptoms years before they get their diagnosis.

MS affects almost three times as many women as men. People from many different ethnic backgrounds can get MS. Read the latest statistics on MS in the UK.

The Amazing History of the MS Society

In 1953, our founders Richard and Mary Cave were frustrated at the lack of treatments and support available for Mary’s MS. So they decided to do something about it.

They set up their first meeting in West London, a small number of people came and the MS Society was born.

Today, we have around 30,000 members and groups in every part of the UK. Richard and Mary’s work has inspired thousands of volunteers, supporters and staff members to make a difference to the lives people affected by MS.

Find out about some of our highlights from the last 60 years.

1950s – The MS Society is born

1953 – Richard Cave hosts first ever meeting in Chelsea Town Hall, London.

1954 – Association of Scottish Branches (now local groups) formed. 

1956 – First branches (now local groups) formed in Wales and Northern Ireland. 

1958 – We establish Research Fellowship Scheme and commit £18,363 to MS Research. 

1960s – Our first MS research appeal on the BBC

1960 – BBC hosts our first TV appeal.

1962 – Our ‘Welfare Services Spending’ reaches £63,000 to help support and care for people affected by MS. 

1967 – Our membership tops 18,000 people.

1964 – The 100th MS Society branch is established.

1970s – 241 local groups support people with MS

1973 – Our research spending reaches £1,000,000. 

1975 – By the mid 70s, we have 241 branches (now local groups) and over 30,000 members

1980s – We invest in the first MRI scanner for MS

1983 – We give £1 million research grant for the purchase of the first magnetic resonance imaging (MRI) scanner in the world to be solely dedicated to MS research. The scanner changed the way MS was diagnosed.

1988 – The European MS Platform is launched, to lobby, raise awareness, and provide information. 

1990s – We launch the MS Helpline

1991 – We launched the MS Helpline, offering support and information to anyone affected by MS. We now deal with 13,000 enquiries a year by phone and email.

1998 – Northern Ireland MS Society starts to build a new Resource Centre.

1998 – We fund the MS Tissue Bank, the largest distributor of MS brain and spinal cord tissue to MS research in Europe. 

1999 – We launched the MS Nurses Programme to fund and develop much-needed MS nurse posts around the UK. 

2000s: £7 million investment in MS research

2000 – We host the largest MS lobby in the UK Parliament, ‘Ending the Lottery of Care’.

2002 – MS Society Essentials series is launched, responding to topics people with MS wanted information about. We now have a range of information resources.

2003 – We set up the Research Network to ensure people affected by MS shape the MS Society’s research programme. 

2005 –  We award £1,428,674 to set up the Cambridge Centre for Myelin Repair.

2007 – Launch of the Symptom Relief Research Initiative to raise awareness and fund research into symptom management for people with MS. 

2008 – We invest over £7 million into new MS research – the largest investment to date. 

2008 – Research investment includes over £2.5m in a state-of-the-art 3-Tesla MRI scanner at the National Hospital for Neurology and Neurosurgery in London. The scanner is dedicated solely to MS research. 

2009 – We launch the first project into childhood MS in the UK in partnership with the children’s charity Action Medical Research. 

2010s – Incredible research breakthroughs

2010 – We partner with UK Stem Cell Foundation to fund up to £1 million worth of stem cell research.

2010 – Research we funded leads to breakthrough showing that damage to myelin can be reversed using stem cells.

2011 – Research we funded into vitamin D shows a direct link between vitamin D and a gene linked with MS. 

2011 – Launch of the first ever MS Register to measure the impact of MS. 

2012 – Botox is licensed for the treatment of overactive bladder in MS. We funded early clinical trials of this symptom management treatment.

2013 – In partnership with the James Lind Alliance, we identify the top ten research priorities that matter most to people with MS.

2014 – Researchers we’ve funded announce finding that exercise can help beat MS fatigue.

2014 – Through the Progressive MS Alliance we help fund 22 research projects aimed at developing successful treatments for people with progressive MS.

2015 – We publish a new consensus on the importance of early treatment for relapsing forms of MS, which could transform life for thousands of people.

2015 – We launch MS SMART, a groundbreaking clinical trial to find treatments for secondary progressive MS.

2016 – We invest £5.7million in research, with £2.5 million going to projects looking for new effective treatments for MS.

2017 – We co-fund MS-Stat2, a study to confirm if simvastatin can slow or stop disability progression for people with secondary progressive MS. It’s the UK’s largest ever trial for secondary progressive MS and will run until 2023.

2018 – With the MS community, we boldly call for medicinal cannabis to be available for people with MS who could benefit.

2018 – MS-SMART results are announced. They tell us a lot about the biological pathways in progressive MS, helping researchers rule out and prioritise other drugs for future trials.

2019 – We launch our ambitious Stop MS Appeal. Stop MS aims to raise £100 million to transform what it means to live with MS, for everyone with the condition.

2020s – Speeding up the development of treatments

2020 – We launch our new five-year strategy, Every MS Story. At its core are the MS stories of the 130,000 people living with MS in the UK, and their carers, family and friends.      

2020 – In partnership with Bournemouth University, we launch our free online fatigue management course for people with MS.

2021 – We introduce Octopus, our revolutionary, multi-arm, multi-stage trial that will transform the way we test treatments for progressive MS.

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May is Fibromyalgia Awareness Month and ProHealth say, ‘Help us raise awareness and dispel the myths about this disease’. Write your story of Fibromyalgia on their site Fibromyalgia Awareness Healing Story Meaning originally written by Rebuilding Wellness. 

Zazzle an American site has a number of Fibromyalgia Awareness Gifts from t. shirts to key rings.  T. shirts are also available from Cafe Press UK. Another brilliant site for anything Fibro related is Fibro Blogger a Directory of People who Blog about Fibromyalgia. So, if you blog about people join this amazing directory of Fibro Bloggers.

There is also a Facebook Site which is promoting May 12th as ‘International ME/CFS/& FM Awareness Day’ so pop over and give them a tick or a donation to help raise awareness of these diseases.


  1. It is a real disorder with measurable biological abnormalities.
  2. There is a specific set of diagnostic criteria developed by the American College of Rheumatology to be used for diagnosing Fibromyalgia.
  3. It affects men, women, and children of all ages.
  4. Several studies have revealed markers of inflammation in Fibromyalgia.
  5. Exercise, when done properly, can help to reduce Fibromyalgia symptoms.
  6. Although there is no cure for Fibromyalgia, it can be managed with the right combination of treatments and therapies.

Infographic 25 invisible symptoms of fibromyalgia

#health, #Spoonie, Back Pain, CHRONIC PAIN, FIBROMYALGIA, MS, MS Awareness Week, Multiple Sclerosis, Uncategorized


It’s Multiple Sclerosis Awareness Week on the 24th-30th April, 2018.

Multiple sclerosis is a neurological condition that affects the nerves in the brain and spinal cord. ‘Sclerosis’ means scarring or hardening of tiny patches of tissue. ‘Multiple’ is added because this happens at more than one place in the brain and/or spinal cord. MS is not a terminal condition but it is one that you will live with for the rest of your life. It isn’t infectious or contagious so you can’t pass it on to other people.

MS is the most common condition of the central nervous system affecting young adults. Over 100,000 people in the UK have MS which is about one in every 600. It is nearly three times more common in women than in men. Most people are diagnosed in their 20s and 30s but it can be diagnosed in younger and older people. Although the effects of MS can vary greatly from person to person, the condition is often categorised into one of three broad types.

There is a wide range of possible symptoms but you usually experience only a small number around the time of diagnosis and you may never experience them all. Symptoms vary from person to person and from day to day. This can make your MS rather unpredictable and can take some getting used to.

Some of the most common symptoms around the time of diagnosis are fatigue (a kind of exhaustion which is out of all proportion to the task undertaken), stumbling more than before, unusual feelings in the skin (such as pins and needles or numbness), slowed thinking or problems with eyesight.

Many of these symptoms may be invisible to other people. This may upset you if you’re feeling very unwell but others think you look OK. You may need to explain that your MS is causing difficulties, rather than assuming that others can detect this.

The MS Awareness Week is an important date on the MS Trust Charity calendar as it helps raise awareness of this debilitating condition.

To help raise awareness they have launched Be Bold in Blue campaign and a new project to help young people affected by MS, with posters and cards to help spread the word during MS Awareness Week.

Being Bold in Blue can be as simple as encouraging people to dress up in blue for a donation or getting sponsored to wear blue nail polish for the week (popular with the men!). You could even take on a really bold fundraising challenge like dying your hair blue and then shaving it all off!

  • Organise a cake sale at work and ask everyone to donate £1 to dress in blue for the day
  • Hold a Be Bold in Blue quiz night at a pub or a collection day in your local shopping centre
  • Fundraise at school by organising a sponsored silence or fun run

However you decide to Be Bold in Blue, you can be sure that the money you raise will make a real difference. Since 2011, together they have raised over £105,000 to support people with MS by providing information they can trust and training the MS health professionals they need.  Head to the website to get your Be Bold in Blue fundraising kit. 

It’s not too late to organise an event or to just Be Bold in Blue from the 24th-30th April. To celebrate MS Awareness Week they are also launching a brand new YouTube channel called MSTV for young people aged 11 to 17, who are affected by MS. The channel will feature videos to help you understand MS, you can subscribe to it on the MS Trust website.