M.E Awareness Week & How Can YOU Help?

8 May 2015

It's that time of year again when ME sufferers bravely come out in full force to raise awareness and funding for myalgic encephalomyelitis, the chronic illness that many of us have lived with for years. ME Awareness Week officially starts in just a few days and so I thought I'd put together an overview of the week for you, along with what you can do to help. I'm low on energy at the moment so excuse me if you're getting déjà vu from last year's posts - I may pinch some information from them to save my health, it ain't plagiarism if you wrote it in the first place after all! Anyway, here we go...


International ME Awareness Day: Tuesday 12th May
ME Awareness Week: Monday 11th May Sunday 17th May
Blue SundaySunday 17th May
Invisible Illness & ME Awareness MonthMay

ME sufferers as well as their families, friends and co-workers have been fundraising, donating, supporting, giving, encouraging, advocating, promoting and championing. As a community that battles every day with this chronic, incurable, untreatable and disabling illness that often renders us too weak and sick to lift our heads from our pillows, I'm incredibly proud and in utter awe of those who have raised money and awareness, registered to take part in fundraising efforts and created their own events. 

Anna over at her wonderful blog M.E. Myself & I is holding a charity tea party - both 'physically' (offline, with friends in person) and 'virtually' (online, with friends on the interwebs) - called Blue Sunday, and it's an event I'll 100% be taking part in. Last year's Blue Sunday was a roaring success and everything was raised, from cups of tea in the air to awareness, understanding, funds and spirits - you can see what Hayley and I got up to here. To make all of our lives easier, Anna has been super and created a Facebook event as well as keeping us up to date with the preparation and planning via Twitter. For more information there's a handy post with more details here. If you fancy joining us then the more the merrier - "all you need is an Internet connection and cake" - and if you'd like to donate, Anna has a Just Giving page here where you can donate to her or Charlotte, Chloe, Ellie, Jamie-Leah, Katie or Sarah - its on its way to a target of £1000 for The ME Association. Be sure to use the hashtags #BlueSunday, #teapartyforME and #virtualteapartyforME so that Anna and us fellow tea partiers can see your submissions. Bring on Sunday 17th!

The princesses are donning their crowns again for ME again - I could talk for ten blog posts about the fantastic work that they do for ME but to be honest, Sian (aka Queen Sian to us!) has it 100% covered in her blog post here. There's nothing more that I could say that she hasn't already said, apart from how proud and in awe of them I am - they've already raised almost £4000 on their Just Giving page here - go, Team Princess!

The Let's Do It For Myalgic Encephalomyelitis campaign also covers lots of fundraising events, from The Big Sleep For ME to Make ME Crafts to Walk For ME.


Louise, the Get Up and Go Guru, had the fantastic idea in aid of raising awareness for ME and fibromyalgia sufferers worldwide - a blog-chain focusing on what it's really like to live with these chronic illnesses. Ever so helpfully, Louise has made it easy as pie to join in by creating the questions for you, or you can take a look at her post here which explains how you can participate even if you aren't a blogger, and how to support others if you choose not to publicly share your story but still want to help. I took part in the blog chain in 2014 - read my #ThisIsME submission here - and I can't wait to see the submissions this year!


 Sally from Just ME is running her #May12BlogBomb again after the success of last year - view her post here to see how you can take part. Even if you're not a blogger, please do your part by retweeting or sharing - the more the hashtag is used, the better!


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If you're reading this post, my best guess would be that you have a family member, friend, co-worker, neighbour (etc, etc) who suffers from ME. Whoever they may be, let's call them 'your spoonie'. A spoonie is a chronically ill person - find out why hereSo, with the whole 'Meg Says' theme of my blog, I'm now just gonna chuck some verbs at you - and you can choose any number of them, but please do choose one at the very least. It's so easy and truly does make a difference - here's where you come in...


"Retweet, retweet, retweet"
The more the merrier, though once will suffice! Easy as pie and takes but a second of your day, retweeting gets the ball rolling and people talking. In doubt? Click here and RT this. Or if your spoonie has tweeted saying something along the lines of, "today is #MEAwarenessDay, please RT to raise awareness for this devastating illness", then you can go right ahead and click that button. Every little helps.

"Share and Like"
If your spoonie has the gonads to be 'openly chronically ill' on Facebook, lend them a hand and share their post on ME Awareness Day. Whether they've posted an awareness photo, linked to their blog or written a status - show your support by sharing.It's caring, you know. Don't want to share? Just click like. It wasn't easy for that person to tell all of their Facebook friends that they're chronically ill with an incurable, widely unknown illness, but it is easy for you hit the Like button. 

"Give"
In order for biomedical research and a potential cure to be found for ME, we need funding. If you're in a position to do so, it would be absolutely fantastic if you could give whatever you can. Numerous charities exist so feel free to look into it yourself and make an informed donation. For an easy option, one of my good friends, Josh, is very kindly running the Bupa 10,000 for The ME Association and it'd mean the world if you supported him here. Other charities include Action For MEME Research, Association for Young People with ME and more. You can also donate to these charities via Blue Sunday or Team Princess as mentioned above, by sponsoring an individual (most of which have ME themselves!)

Not rolling in cash at the moment? Not to worry. Skip the donations and move onto the next thing that Meg says you can do to help out your spoonie (and theirs!)

"Take part"
Anyone and everyone is welcome to join in and take part in raising awareness for ME, and it's totally free. If you know of any local events, great - why not go? If you don't know of any however, I'd highly recommend jumping aboard the Blue Sunday train. It really is so simple to get involved - who doesn't want to eat cake for a good cause? - and we'll all metaphorically chink our teacups to yours as a 'thank you'. If you're doing a marathon this year and don't have a charity yet please consider running for ME, wear a blue ribbon for ME Awareness Week or indeed all year round - the ways to get involved really are endless, so get creative!

"Read and Forward"
Blogging about your health is challenging, especially when it's poor. It's extremely daunting (and brave!) to put yourself out there, so lend a helping hand and have a little browse through some ME-related blogs. If you like what you see, please forward it to your friends and spread the word. A lot of time, effort and hard work goes into posts that are written, often solely, to help raise awareness and it'd be great if they could reach as wide an audience as possible. A good option is something like A Day In The Life Of An ME Sufferer here or Why Is ME Awareness So Important here.

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So, the reason you're here is because you know someone with ME - they may be your little brother, your boss, your aunt, your flatmate, your best friend - and they need you. 

"Speak, check, offer": Have you ever spoken to them about their illness, checked how they're coping, offered any assistance?
"Askconfirmhelp": Have you got any questions that you'd like to ask, is there anything you're curious or confused about, do you think you can help in any way? 
"Encouragesupportlove": Have you always wanted to tell them something - that you're proud, that you're there for them and that you love them?

There's no better time than now, from the 11th to the 17th in ME Awareness Week.
ME isn't recognised as the life changing illness that it is. Many think that ME is 'just tiredness', and others deny it exists. In 2015, sufferers having to fund their own medical research when they're too sick to sit up in bed is wrong, and it's time for change. Whichever verb you choose from those I've suggested, you can help - please do. 

12 comments:

  1. Meg, just a great summing up for all in next week - for all who suffer or want to help or don't know about it but will definitely want to help after. I appreciate your courage and hard-working of you and all spoonies and if there could be found words for thise feeling - they are in my heart. I will try to participate next week as much as I can, and just wish you enough energy for this week, which demand more energy, than usual, may I guess. Anyway, though I will never ever wish anyone this illness, I'm happy that this year, after I get know you, I have an opportunity to participate. So grateful to know you all.

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  2. Brilliant post Meg. Thank you so much & let's hope we raise loads & loads xx
    Ali
    beingamummywithme.blogspot.co.uk

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  3. Reading your blog has really increased my awareness of M.E and although I'll never understand how you feel, I can begin to understand what a journey you and other suffered go on during an every day basis, and the emotional strength you've gained in sharing your story and still living your life.

    I'll totally be supporting you and the community this week! Loads of love <3

    Lauren x

    Britton Loves | Lifestyle Food Beauty

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  4. You're a little babe. Did you know that?! Can't wait to see your photos. Bring on the cake

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  5. Just starting to read it now. Can you edit it: International M.E. Awareness Day is May 12, not May 11

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  6. Ok guys this challenge was initially started by four girls who were fed up of waiting for things to happen and wanted to try to do something a bit crazy and fun to get ME spoken about in the mainstream. It might not be everybody's idea of the perfect challenge but there is no denying that it has gathered huge interest and following and really has the potential to raise massive funds for research.

    But only if all of you participate. We keep quoting in the press of the hundreds of thousands of ME sufferers around the world. If each of those people asked one healthy friend or family member to do this for them and they in turn nominated others..Just think how huge it could be.

    So don't sit back and let someone else do it. Let's take charge globally albeit with a crazy little challenge...and show the world that we can have fun too and that we are capable of raising the money and awareness needed for ME/CFS. Take the ice bucket challenge for ALS as inspiration and hit the internet hard with our chilli videos over the next few days for May 12th ME awareness day. If we all do it together (or have people do it in our honour) surely the world can't ignore us any longer.

    You can all do your bit by making videos, asking friends to make videos and donate via poster info and tweeting #chilliMEchallenge lets get this thing trending in the mainstream and put a voice to all the sufferers that don't have one. #inthistogether

    Love from the 4 chilli's in a pod

    https://m.facebook.com/ChilliMEChallenge?refsrc=https%3A%2F%2Fwww.facebook.com%2FChilliMEChallenge

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  7. Edited :) thanks for letting me know, my boyfriend's birthday is May 11th and I wrote this in one go yesterday on very little spoons - my bad! Thanks for sharing, Tom :) x

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  8. Thanks and thanks for doing it. I shared it in lots of places.

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  9. Thanks so much, Ali :) so proud of you, princess! Hope you had a lovely birthday, beautiful x

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  10. That means the world :) thanks Tom! x

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  11. BRING. ON. THE. CAAAAKE! I can't wait either, last year was absolutely fabulous and this year is set to be even better :) x

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  12. This honestly means the world to me, thank you so much Lauren! You're the loveliest and it really encourages me to hear things like this - it's so touching as you could just skip past the ME-related posts and read the makeup ones or whatever, but you always stop to read them and leave a thoughtful comment which fills me with so much happiness. You really are the best :) ALL the love x

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