Barry’s Movember Blog for M.E.

(Reposted with kind permission from Barry’s M.E. Blog)

Hello everyone!

First of all I’d like to thank Jo Best for asking me to contribute to this months Movember for Invest In ME. Second of all I’ve always struggled with growing a beard so mine would look pretty much the same after 4-5 weeks of growing! So I thought I’d share a recent pic of when I let it grow long (for me).

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I’d like to now share my story of my journey with this terrible illness. I was previously a very active person who enjoyed all sorts of sports varying from football to wrestling to ice skating, I’ve always been very ambitious setting high targets for myself.

I’d never heard of ME before the summer of 2012. My friend at the time had this illness which I’d never heard of, in fact I didn’t know she had it until I started meeting up with her. I began to ask her questions out of curiosity and because I always try to show empathy towards others. she starting describing her symptoms and it made me stop and think, I instantly knew that this was what I could be suffering with. Throughout my studying years I always struggled with fatigue. I would need to sleep during the day as well as night, my concentration levels were non-existent however hard I tried and there was always discomfort in my muscles which I never took any notice of. I’d been to the doctors many times about these things but every time I was turned away made to feel like a hypochondriac. A lot of it was either put down to my diagnosis of Asperger Syndrome or depression which I’d struggled with after leaving high school. However, I always knew that it was something more than that.

After I had graduated university in 2012 I went straight to a personal training academy for 6 weeks. In the midst of this I had been to the doctor and she agreed to refer me to a consultant at the Liverpool Royal Hospital. I was exhausted by this point but in the back of my mind I thought I would be ok as I’d managed to cope with fatigue for many years, plus I didn’t want to lose for money I’d paid to enrol on the course. I went ahead with it and very quickly I knew it wasn’t the right thing for me. I really struggled with the practical side of the assessments despite having been a gym goer since the age of 14. The discomfort in my muscles increased each day and it got to the point where I couldn’t do any aerobic activity without a lot of pain. The theory side of the course was incredibly difficult too, my concentration levels were deteriorating by the day but I persisted with it. It all felt like a massive coincidence and that it was probably a phase that would pass.

I started working as a Personal Trainer very shortly after my course and only lasted for 3 weeks. I had to go into hospital as my leg pains had gotten to the point where I couldn’t function properly because it was so overpowering. A few days later I was taken back in with gastroenteritis where I had to stay in hospital overnight, I’d lost a lot of weight and blood and never returned to work after this.

That was at the end of 2012. We’re now at the end of 2015 and I haven’t been able to work for the past 3 years. My ME has gone from mild to moderate and I’m at the point where I feel lucky if I have 2-3 good days a week, by this I mean the average chilled out day of a “normal” person with nothing too strenuous. Some weeks I’m only able to get 1 shower and some week I spend the majority of my time in bed. I attend Cognitive Behavioural Therapy at Broad Green hospital for a couple of years though there’s only so much it can do. I was recently discharged and I’ve not long had my first session at a local pain clinic.

I could go on for hours about my daily struggles but then I know the majority of people reading this will be going through very similar things. I’m 24 and day by day it feels like my hopes are fading away. However, I know that life won’t always be like this and I (try to) remain positive about the future. Smiling hasn’t always been a strong trait of mine but I’ve been told it’s infectious so here it is…

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During the last 3 years there are positives to be taken from it. I discovered a new hobby in singing which I wouldn’t have found without this diagnosis. I’m currently working towards my grade 3 and slowly but surely I’ll get there. On and off for long periods I’ve been studying theology which is a big personal interest for me as my faith has kept me going through these difficult times. I’ve also managed to write a couple of books about my experiences to try and help others. I’m not the best writer in the world and I can’t see myself ever making a career out of it but it’s been a very positive thing for me and I’ve met some amazing people through it. My first book “A New ME” has raised £175 for Invest in ME charity which I’m very proud of. I also have a blog which I update when I can which focuses on my journey: http://barrysme.blogspot.co.uk

I support this charity because they a lot of amazing work which focuses on the 3 areas: biomedical research, education and lobbying. I think these 3 key areas are essential in changing the publics general opinion of this illness. I’ve always been impressed by their work and I try to do what I can to help the cause.

Finally, I forgot to mention that I’m a massive lover of animals and in particular RATS of which I have 18! (luckily I don’t have the job of cleaning them out).

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Thanks for reading and if you’d like to check out the charity then click here: http://www.investinme.org/about.htm

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*You can find A New ME by Barry John Evans on Amazon. Using this referral link to buy anything from Amazon generates an extra donation to Invest in ME at no extra cost to the buyerhttp://www.amazon.co.uk/?_encoding=UTF8&camp=1634&creative=6738&linkCode=ur2&tag=ininme-21

* You are welcome to join in our take on Movember awareness of men’s health Nomenbar for M.E.

Message from Stuart Murdoch

Stuart Murdoch musician, writer, director, filmmaker

Stuart Murdoch musician, writer, director, filmmaker

 

Stuart Murdoch, writer and director of the film God Help The Girl, and acclaimed lead singer and songwriter for the indie pop band Belle and Sebastian, has kindly left a message in our Guestbook. Our awareness and fundraising campaign exists in support of the work by Invest in ME charity on establishing a centre of excellence for translational biomedical research – a hub for proactive scientific research aimed at finding diagnostic tests & medical treatment options for people with myalgic encephalomyelitis – something long-awaited, as Stuart would attest to, having contracted ME as a university student at the end of the 1980s.

In 2006, Invest in ME (now aka Invest in ME Research) set out its stall as representing ME as classified by the World Health Organisation since 1969.

“We are an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.

We have links nationwide and also internationally. Invest in ME are one of the founding members of The European ME Alliance.

Our aim is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the Aetiology (causes), Pathogenesis (harmful effects) and Epidemiology (the pattern of distribution of a disease through a population) of M.E. This should lead to the development of a universal “thumb-print” test for diagnosis of M.E. and, subsequently, medical treatments to cure or alleviate the effects of the illness.

Invest in ME want to establish a national strategy of biomedical research into M.E. and establish a UK and European Centre of Excellence for biomedical research into M.E.

Please help make M.E. an illness which is properly understood and where adequate funding is provided for biomedical research into ME allowing treatments and cures to be found.” www.investinme.org

That same year saw their first annual international conference held in Westminster in London within walking distance of the Houses of Parliament. This is pertinent as the influence of politics on medical research into this illness is quite extraordinary and drove the need for patients with severe ME to set about crowdfunding the Invest in ME Research strategy ourselves.

So where are we now?

May 2015 saw the 10th Invest in ME Conference #IIMEC10 and the 5th Invest in ME Biomedical Researchers into ME Colloquium #BRMEC5 facilitating national and international collaboration.

The foundation research project of the centre of excellence is underway. The focus of the research strategy is on the role of the immune system in mediating the multi-systemic signs and symptoms of the illness. The starting point is the role of the gut microbiome in ME, as the gut is central to the immune system, and this is in line with research in this area for a number of illnesses.
The second project on the role of the gut in ME has been in the planning meanwhile, and we continue raise the further funds for this (£200k target).

An initial study of B-cells has been completed, prerequisite to the UK clinical trial of rituximab announced by Invest in ME in June 2013, and a paper has been submitted for publication. Early results showed potential value in developing the B-cell research, and this was included in the Invest in ME Rituximab Research Fund (current target £520k). The research is adding value to the current Norwegian Phase III Double Blind Placebo Controlled Trial of this B-cell depletion therapy. Great collaboration between two expert and pioneering research teams in UK (B-cell research and rituximab in rheumatoid arthritis) and Norway (oncology and rituximab in ME) respectively.

NHS reforms set back plans for the clinical arm of the centre of excellence proposed by the charity. PCTs were disbanded, creating changes in personnel and procedures. Invest in ME went back to the drawing board in their negotiations, while immunologist Dr. Amolak Bansal stepped in to provide samples for the gut research from patients under the care of his specialist service in Surrey. A post was advertised a few weeks ago by East Coast Community Healthcare for a consultant/specialist to lead the Norfolk and Suffolk Specialist Service. ECCH stated their intention to expand their involvement within research, and that this post will be pivotal to that development, with the specialist taking a service lead in relation to biomedical research by developing the appropriate external links.

Support for the education of the next generation of doctors includes funding intercalating medical students to be directly involved in Invest in ME biomedical research, proving so successful that the charity plans to fund two more medical students funded by the Big Give Christmas Challenge.

Invest in ME formed its Research Advisory Board last year and held the first meeting of a new European ME Research Group in London last month.

As Stuart so rightly said, it’s a long, hard struggle. But the future now looks a lot brighter for ME patients and families in UK and beyond, thanks to 10 years of unwavering conviction, dedication, perseverance and sheer hard work of this independent charity and its growing band of supporters. Invest in ME is entirely volunteer-run. No frills or fuss. This does mean that their work is not widely publicised, so please help us to spread the word. More publicity of the work being done = more support = more funds for the research = faster track to tests & treatments = better diagnosis and medical care = greater chance of recovery.

Stuart Murdoch’s own ME story is bittersweet. Falling ill in his early 20s, Stuart’s experience sounds fairly typical of young people with ME, and is a sad reflection of how poorly understood and neglected this illness has been for so long. Stuart’s parents had made him take piano lessons as a child and he formed a band with friends at school at the age of 12. The later long-term isolation enforced by the severity of his chronic illness led Stuart to express his feelings through song-writing. “Songs used to burst out of me when I was younger because I’d been through such a miserable time and had been in isolation for so long.”

Stuart found mutual support through empathy with others with ME and tells of how he and his friends compared themselves to the elderly characters in the enduringly popular long-running TV comedy series, Last of the Summer Wine, with the highlight of a good day maybe meeting up for an hour in the afternoon for coffee. This will no doubt resonate with many young people with ME who find they are rendered less physically and mentally able than elderly relatives.

ME can take a relapsing and remitting form, and significant improvement can feel like a full recovery. After seven years of illness, Stuart recovered sufficiently to return to a semblance of normal life, but what lay ahead was far from ordinary. “I was probably quite an embarrassing person to be around. You’re like a baby bird breaking out of an egg. I had a dream band in my head for years and years, while I was cogitating in darkness.” Stuart went on to form the hugely successful Belle and Sebastian in 1996, “a pop band that sprang out of infirmity.”

For years, Stuart kept his ME a secret. “I always hated telling people,” he says. “That’s one reason I lived on my own for so long, because I had this thing and I knew how to deal with it and I hated talking about it because it was such a waste of energy and time.” But this changed of necessity when Stuart suffered a relapse, and his willingness to speak with gentle candour about his lived experience of the illness has endeared him to the wider community of people with ME.

It’s a strange irony that there’s a popular perception that people with ME reject the suggestion that the illness is anything other than the physical/neurological illness classified by WHO, because they do not want the stigma attached to having a mental illness, when in fact, ME has become possibly the most stigmatised illness of the modern age, such that there is an almost audible sigh of relief and gratitude when someone in the public eye ‘comes out’ about having ME. When that someone is able to articulate their lived experience with such eloquence and genuine empathy as Stuart Murdoch then that is a gift to the global community of patients, families and supporters. Thank you Stuart.

Stuart published his first memoir ‘The Celestial Café’ in 2010. His first film ‘God Help The Girl’, which he conceived and directed, was released in 2014.

You can see or listen to interviews in which Stuart Murdoch talks about his experience of ME, for example, with Mary Anne Hobbs on BBC Radio 6 (May 2015) and with Carol Head in America (August 2015).

Many thanks to Stuart Murdoch, and to echo his words, “let’s get into the light!”

Let’s Do it for ME!
in support of
Invest in ME (Research)

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For November Awareness of Men’s Health

My M. E. Story by Ronan Lavin

Ronan & Nicola Lavin
Ronan & Nicola Lavin

Alright lads I “moustache” ye a question. I am doing Movember for Invest in M.E. and anything ye can muster up to help “shave” some lives would be greatly appreciated. Follow the link below to donate what ye can www.justgiving.com/movember4me. On a serious note my wife suffers from this and it is getting worse. Millions of people around the world suffer from this and chances are you know or are related to someone who has this terrible illness. Funds are desperately needed for research. Thanks for your support. I’ll update ye with a pic in about a week when I have it grown.

I met my wife Nicola about 6 years ago and fell for her instantly. She is fun smart and beautiful but later into the relationship something happened. My wife had her son Aaron 14 years ago and after the birth she wasn’t the same. She developed postpartum cardiomyopathy and everything changed for her after that she never got back to the way she was. But it got worse when some years later she went for routine operation and since then her M.E. has become worse.

It is so hard to see your loved one go through such hard times and not being able to do anything to help, this is extremely upsetting and it makes you feel so useless. My wife has been having to spend more and more time away from work which is also tough financially. This is so hard for her as she absolutely loves her job and is extremely hard working. Despite all of this she has not ceased to amaze me. I am so proud of her to see that despite having an illness that is really debilitating and has such a stigma attached to it she pulls through. She is the strongest person I have ever come across. She was able to raise over 1.5 million dollars for M.E. research with the Chilli M.E. Challenge and this is still growing. To find out more about M.E. see her Chilli M.E. Challenge intro video.

The researchers in USA and Australia supported by the Chilli M.E. Challenge are all involved in the Invest in ME International Conference & Biomedical Researchers into ME Colloquium and workshops. We live in Ireland and the Irish ME Trust is kindly donating Irish Chilli M.E. Challenge donations to Invest in ME Biomedical Research Funds. Both charities are members of the European ME Alliance of like-minded organisations intent on moving things on for people with M.E. This year the European ME Alliance joined the European Federation of Neurological Associations and also formed a European ME Research Group. They get no government funding so all this work in UK, Ireland, and the other EMEA countries is funded by donations, so please do what you can to raise awareness and funds to keep this vital work going on the fastest track and help millions of people get their lives back.

Aaron, Nicola, Ronan
Aaron, Nicola, Ronan

Donate to support Movember for M.E. at www.justgiving.com/movember4me

Movember and ME

First up I had better introduce myself, I’m Dave (Mawer) and I’m writing this blog today because Let’s Do It For ME have kindly asked me if I would share with you my story.

So why do I support the group of fundraisers that make up Let’s do it for ME raising money for the charity Invest in ME? Until 2010 I was blissfully unaware of the illness ME,  no one I knew had it and as far as I was concerned it was some trifling so called illness of lazy folk, people who didn’t want to go to work and so were signed of as having “Yuppie Flu”. TV sitcoms were the only reference I had to it and it was a source amusement and jokes and seemed to not be anything of concern. Back then I had no idea how wrong I was!

So, what changed my mind? My wife and two of my three daughters now suffer from ME or if I am to give it it’s full name – Myalgic Encephomyelitis. If like me, you think this is nothing much to be concerned about then you are wrong – it is a very real, serious, debilitating, life changing illness that evolves, the symptoms change from day to day, person to person. Some are only affected mildly and others very severely. For us it has altered our complete way of life, we have had to adapt, learn, read and research the illness in order to fight prejudice and ignorance and try and raise awareness and educate. My wife, Tanya, has only recently been diagnosed and as chief carer to our daughters has been floored by this. She struggles to clean the house and so our eldest daughter Keisha comes weekly to do it for her. She manages to care for the girls but it’s a struggle. Her favourite pass time of taking our dogs for a walk now is impossible, something she misses terribly – but the dogs are okay, don’t worry, I have built a fence around our garden so they have a large play area to safely charge about in together. We have little social life and any social engagements come with planning so that she can leave early when it becomes too much. Tasha and Tara both have been out of mainstream education, in and out of hospital, suffered terrible pain, mobility limitations and had to forgo social milestones such as proms, leavers day, parties and things that normal teenagers enjoy. However – as a family this illness has somehow brought us together, forged a much stronger binding bond that is held together with humour, laughter and a determination to change how this illness is perceived.

Every year we participate in the Walk for ME during the May ME Awareness week, we love doing this but now it’s harder with 3 of the 5 of us suffering, so next year will be a much shorter, gentler affair as usually myself and Tanya push the girls in wheelchairs so now that will have to change.

Mostly we fund-raise as a family or Tanya does something like give up alcohol, chocolate and just recently meat for a month for sponsorship. I always wanted to do my bit and so found I could do something that Tanya couldn’t do (or at least I hope not!) and that’s grow facial hair! So I decided every November that I would participate in the Movember for ME fundraiser, which has seen me have a few different looks, as you can see…

Movember 2012
2012 Movember with silly moustaches.
2013 Movember
Harnessing Walter White in 2013
2013 Movember
2014 Movember with Mohawk

As well as setting up a justgiving fundraising page I had cards printed up which I handed out to people with links to how they could donate and a sweatshirt printed with the link to donate and what I was doing so when I was walking out and about people would see and stop me to ask me about it.

For 2014 Movember we added that I would shave my hair into a Mohawk if further donations were given, they duly were and so we videoed Tasha shaving off my hair! You can see the video here on Tanya’s youtube account along with other fundraising videos such as Keisha cutting off her dreadlocks, Tanya, Keisha and friends taking the ME Chilli challenge and two ME Awareness videos made by the girls.

This year I can’t partake in the Movember for ME challenge because after last year I decided to keep my beard and am now going to just let it grow and see how long I can get it!

Me with my growing beard and doppelgänger!

So, I call out to all you grandfathers, fathers, brothers, boyfriends and male friends of sufferers of ME OR perhaps you may suffer with ME yourself.  Why not give it a go this November and allow your facial furniture to evolve and grow in order to do something special for the ME community by raising money to go towards vital research into this illness. This will give hope to all sufferers and potentially be the start of effective treatments and ways to help our loved ones get better and regain control of their lives.

The gauntlet has been laid down – will you take up the Movember for ME challenge?

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Here’s the Let’s Do It for ME Movember JustGiving page you can use with the JusTextGiving code – MFME77 (£1-£5 or £10) to 70070 – justgiving.com/movember4me

Nomenbar for M.E.

One More for ME – Bill Clayton’s Story

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We launched a new ME site in September at www.York-ME-Community.org. We have linked to Invest in ME through our site as we can see the great work they are doing for us and want to spread the word! They support the areas of research that I can see being useful to us, now and in the future. We also have members of our group who do their bit in raising funds through selling crafts for IIME and we tend to point new members to your site as where to go for good advice. I think Mike Harley is doing a magnificent job in running these marathons and as I used to do a few myself, I’m also a little jealous of him!

Bill Clayton I was first hit with ME over 9 years ago. We were on a family trip to the Lake District on a reasonably warm day, when I started to feel cold and shaky. I had to go inside and wrap everybody’s jackets around me to keep warm. Next day, I felt as if I’d been hit by a train, bruised and sore all over and could hardly move. I was pretty much like everyone else, working full time, stupid hours, with a busy social and sporting life. A week would include badminton, archery, training a girls football team on a Thursday, with a match on a Saturday. I also ran marathons for charity, now I can’t walk for toffee. I now have a Blue Badge and Bus Pass years before my time!

The social life has dropped away as I’m no longer able to cope with the background noise of a busy pub or restaurant without ear plugs and enduring massive payback later. I can no longer work as I had to give up in January 2015 as I could no longer function in an office environment. Just routine noises in the office would drain me and leave me unable to think straight, concentrate, or find the words to put a simple sentence together. Background conversations make my head explode as I can’t filter out one conversation from another with my brain trying to take on everything at the same time, and understanding nothing! I went to a large Supermarket a little while ago and was totally overcome by the background noise and lights to the extent that staff had to take me out of the shop in a wheelchair. My legs had just frozen and stopped working, and my brain had locked up in such a way that I couldn’t find the words and was able to speak anyway, to tell them what was wrong!

When other things are going on around me, someone talking to me is like them throwing a bucket of words at me and them just bouncing off, my brain not knowing what to do with them. So generally, like most with ME, my world has shrunk dramatically, with little chance of being able to work again, and most activity brought to a halt.

It obviously affects my immediate family at home, my wife and daughter. Small unexpected noises around the house can affect me; my daughter just tapping keys on her laptop, or my wife turning a page in a magazine. It’s as is my ‘Fight or Flight’ mechanism is running at 95% all the time. When I’m drained, these sounds actually hurt, but they can’t do any more than they do to help me. Trips to the shops are rare, and although I’m not a keen shopper, it would be nice to have these trips out with family now and again.

It follows through to other family members as I can’t go to visit my son, daughter-in-law and granddaughter as often as I’d like as the travelling can mean I’m worn out by the time I get there, even though I no longer drive other than short distances. Friends no longer call to see if I’m up for a night out, as they’re pretty sure I won’t be. It would still be nice to be asked though……

I like to get involved in the conversations and posts on the Invest in ME Facebook site and like to chip in with my thoughts, views and support where I can. I also ensure that I share any items that I feel would be useful to others. It is also the site I recommend others to look at for good advice and as the ME Charity to support. We also have members of our York ME Community who sell crafts with all proceeds going to Invest in ME charity.

I’m a huge supporter of the work Invest In ME is doing towards the Rituximab Trials. It seems to me to be the one positive going on out there for us. However I strongly believe that to get these funds we must first work on raising awareness in ME. I think that at the moment people are a bit charity weary as there are so many worthy causes to give to and so I don’t want to be seen as just someone else holding out the begging bowl.

As someone who used to run marathons for charity, I used to find the hardest part was asking people for money, not the running! I also think it’s so difficult to get folk to give towards an illness they know nothing about. I’d rather leave that to the big boys rather than my ‘one man band’ website and concentrate on raising awareness. If we can do more of that, belief will follow, then the funds to find a cure for this beast, and hopefully that will come from the Rituximab Trials being so well supported by Invest In ME.

I spend what energies I have now in running an ME website at www.York-ME-Community.org. Although based in York with a local flavour, everyone’s welcome. Although it’s for those interested in ME, we spend a lot of time discussing other things. We aren’t defined by an illness and we see our site as a bit of a Corner Shop where we might bump into an old friend, where we might talk to about last night’s TV, or about the football. We talk crafts, poetry, have a Jokes page as well as a link to a 24 hour on-line Military Veterans Radio Station that supports us. Although initially an on-line group so as to be accessible to our housebound friends, the ladies of our Community have recently held their first coffee morning. Although all expected ‘payback’, they had a great time!

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We have lot of exciting ideas lined up, so please come and register on our site and join in the Community! I can also be contacted via bill@York-ME-Community.org.

It’s so important that we don’t continually look inward, complaining about our lot. We have to look forward, and be heard. We need to raise awareness and belief to get the funds we need and so it’s pointless just talking about ME to others who already know. We need to be telling others, and so through Twitter I’m trying to get everybody, that’s sufferers, carers, family and friends to tell one new person a month about ME using the hashtag #onemoreforME.

We may have ME, but ME doesn’t have us!

ME and M.E. by Bill Clayton

ME isn't real by Bill Clayton

Cut & Paste by Bill Clayton

(click here for our intro to Let’s Do It for ME take on Movember Awareness of men’s health issues and please share – thanks for your support!)