M.E. – Page 2 – BACK PAIN BLOG UK…

#health, #Spoonie, Back Pain, CHRONIC PAIN, Fibrmyalgia Awareness, FIBROMYALGIA, Flare Magazine, HEALTH, low back pain, M.E.

THE ULTIMATE GUIDE TO FIBROMYALGIA, M.E AND CHRONIC FATIGUE…FLARE MAGAZINE…

May 2, 2018May 2, 2018 barmac5

Flare Magazine is the ultimate guide to Fibromyalgia, M.E & Chronic Fatigue and to help raise awareness of these conditions. The magazine was brought about through a support group in the North West. It is written by a team of 3 volunteers with contributions from members. I have also joined the team to write on Complementary Therapies. All those involved are volunteers who have FM/ME/CFS. They currently have 5 Trustees, Beth Urmston (who is one of the editors and created the magazine), Julie Britten, Cath Farrer, Sian Philips and Sara-Louise Williams ( another editor).

You can download the magazine or head to Flare Magazine website for the flip page Flare magazine where you also find all the back issues of the magazines for free download. Each back issue is available as individual pdf files or as bulk zipped files, if you require the zip files please contact the admin by clicking here.

This month’s issue number 37 is also celebrating it’s the fourth year of publication. As with past issues this magazine is full to the brim with information and this month includes, The Apology I owe to my patients with Fibromyalgia from Amanda Shelley who worked in urgent care for many years. How to manage your housework better, my article on Complementary Therapies, Common myths about CBT, all about Magnesium Baths and Epsom Salts. Vanilla is discussed in Nature’s Pharmacy section, and the usual Questions to ask your Doctor and Tummy Ticklers. Labi Sifri on something inside so strong, with Doctors, say the Darndest things (they certainly do) Fibromyalgia Awareness, Looking back at awareness and a recipe for Butterfly Cakes, and we are only halfway through the magazine.

The second half of the magazine covers The Blackpool Raffle, links to their online Shop, an article on Fibromyalgia educators could fill a vital gap in care, and Why we are fundraising for research. All about National Doughnut Week (yum, yum) and an article on Doctors by Kronically Kayt. Being drug-free with help at hand plus A Global Campaign on M.E rights. An article on supplements and Are You a parent with Fibro?, Do you know what I know and a reader offer for the N:Rem Sleep System which I have written about on a few occasions.

The last pages of the magazine cover Easy Fundraiser by shopping online, The Fibro Community, Making a complaint to the NHS, a Disabled View and a Warm Home discount. The final two chapters include groups and blogs and important notices.

It’s no wonder this magazine is distributed bi monthly with so much content put together by a voluntary team but one which I think is well worth a read. Well done Flare Magazine for putting together such in-depth information on all things Fibro, M.E and Chronic Fatigue.

#health, #Spoonie, Back Pain, CHRONIC PAIN, FIBROMYALGIA, Fibromyalgia Awareness Day, HEALTH, low back pain, M.E.

#FIBROMYALGIA AWARENESS DAY 12TH MAY 2018, EVENTS…

April 30, 2018 barmac5

Help us to promote Fibromyalgia Awareness Day on 12th May 2018 in any way you can. Some Fibro groups have created unique ways to help promote awareness.

To mark Fibro Awareness Day the Flare Group meet at the Blackpool Tower for their annual Global Light up the Night where the Tower will once again light up in purple with a blue heart to represent both FM and Me.If you would like to get involved, visit or donate to any of their events or fundraisers please contact them by clicking here, you can also message them through their social network pages and groups. blackpool

Fibro and Chronic Pain Support Group promote the awareness day on a Facebook page which is an online event only so you can attend from the comfort of your home or work! Fibromyalgia (FMS) & ME/CFS Awareness Day for May 12th of each year, but will be recognized by us all year round. It isn’t just one day that we want awareness, it’s every day because every day we deal with chronic pain. We attend at the comfort of our home and work. We will be able to share together support, love, care and information. Fibro and Chronic Pain Support – Page Link: https://www.facebook.com/FibroandChronicPainSupport – International May 12th Light Up the Night Challenge
https://youtu.be/O4Bzevj6WGA

Fibrodaze also has the above and others on their list of Fibro Awareness online events

Fibromyalgia Action UK have an events page with a list of awareness events and have a Campaign Pack to help you organise your own event. It’s still not to late to sort one out. Their campaign pack is designed to help you share the message among your community about fibromyalgia and the significant impact that the condition has on their lives of those living with the condition, as well as family and friends of those affected. There is a range of materials available to download and print from the Fibromyalgia Action UK website, that you can use to promote your activity or to encourage people to talk about fibromyalgia.

May 12th International Awareness Day – Since 1992, they have been raising awareness for May 12th! Each year landmarks and private homes around the world are lit with our colours on May 12th. May 12th has been designated as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) since 1992. The CIND illnesses include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS).May 12th was chosen as it is the birthday of Florence Nightingale. She was believed to have suffered from ME/CFS. In 2010, a write-up was done to give a history of May 12th. Their Facebook page has events and lots of info on Fibro and other conditions.

National Fibromyalgia and Chronic Pain Association are based in America and also support May 12th’s awareness day and have a map with links to events happening in the US.

Together Walks is another US charity that has been set up to raise funds for research and help people connect for May 12th Fibromyalgia Awareness Day.* More than 700 live champions and thousands of online champions have joined Together Walks. Click here to register for live and virtual 2018 Together Walks as well as to create and join walk teams. The Hub is an all-new website designed to help people create a fundraising event for fibromyalgia research and then promote it.

A few other events in the UK include –

Fibro Warriors Fibromyalgia Awareness Day Meal on Saturday 12th May, in Tameside.

Fibromyalgia Awareness is having a May Ball at Friern Manor on Saturday 12th May, in Brentwood.

Fibro PaIN is hosting a production of Invisible – One Woman’s Fight with Fibromyalgia -a play by CLM Productions and starring Charlie Maxx & Angie Walker about one woman’s fibromyalgia journey, on Saturday 12th May, in Renfrewshire.

If you have an event that has not been mentioned in this post please feel free to add to the comment section.

#health, Back Pain, CHRONIC PAIN, FIBROMYALGIA, HEALTH, M.E., pain

ACTION FOR ME, RAISING AWARENESS OF THIS CONDITION…

March 19, 2018 barmac5

Our current projects

Action for ME is a UK charity which helps support and helps make a difference to people suffering from M.E.

What is ME ? – ‘Myalgic Encephalomyelitis (M.E.) is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems. M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide.

People with M.E. experience severe, persistent fatigue associated with post-exertional malaise, the body’s inability to recover after expending even small amounts of energy, leading to a flare-up in symptoms.

Not everyone will experience the exact same symptoms so it’s important not to compare someone who has M.E. to another person who has the illness. People with M.E. can vary enormously in their experience of the illness, and also how long their symptoms last. Some make good progress and may recover, while others can remain ill for a number of years and may not get better. Some people find that they don’t go back completely to the way they felt before they became ill, but they do recover sufficiently to lead happy and fulfilling lives. This is similar to many other chronic illnesses.’

Fibromyalgia sufferers understand what it’s like to suffer from chronic fatigue but M.E sufferers experience this in a much bigger way, a way which most people could not comprehend. Several descriptions of illness resembling those of M.E and chronic fatigue syndrome have been reported for at least two hundred years but they say that ‘a lack of understanding and awareness about M.E. means patients can experience disbelief, and even discrimination, from friends, family, health and social care professionals and employers.’ Sounds familiar?

Fibromyalgia, CFS, and M.E all seem to have a similar pattern of not being accepted as a genuine condition or people suffering without a diagnosis. The only way to raise awareness of these conditions if for sufferers and carers to highlight the plight they are in. Action for M.E is just one of those charities trying to raise awareness of the condition. They take action to end the ignorance, injustice, and neglect faced by people with M.E. They do that by helping to improve the lives of people with M.E. while taking action to secure change for the future. Read more about this in their 2016-2021 strategy.

Their mission is empowering people with M.E. to fulfill their potential and secure the care and support they need while working towards a greater understanding of the illness and ultimately a cure.

You can listen to a recent interview on March 16th on BBC Radio Bristol where their CEO Sonya Chowdhury spoke with presenter John Darvall about young people with M.E.