What Next?

When we first rallied together as individuals to blog for ME/CFS Awareness in 2008 it was out of frustration at not being able to do very much for ME Awareness Day/Month and not being able to find an official web site with badges and banners.

A lot has changed since and social media has mobilised a lot of people to do their bit.

There is now an excellent resource on Facebook for May 12th – International ME/CFS & FM Awareness Day with a lot of support and I’d like to direct you there for inspiration and support on how to raise awareness.

I think we have fulfilled our purpose and in many ways help to ingite a spark that others have carried through into bigger things.  Our Blogging for ME/CFS Awareness and badges captured the imagination of people who went on to set up Blue Ribbon Campaign, then WAMCARE (who ran until 2010) and the well suported Facebook May 12th group. People who had a vision to do it bigger, to do it better.

My own personal feelings about What Next with awareness campaigning is that fragmenting efforts doesn’t aid the cause.  That it’s better to add your support to existing campaigns and infastructure especially when your individual contribution is hindered by your illness.

Also that while our blogging has certainly helped to generate the seeds of bigger campaigns and has engaged individuals in using their voice, that often the word is only reaching those who are already aware of ME/CFS and FM. To be effective in raising awareness the message needs to reach people whose lives have never been touched by the illness.

So, I feel it is better to use my energy to back the work of organisations out there working to raise awareness of ME/CFS every day and to advocate for PWME’s.  I’ll still mark May 12th and use it as an excuse to try and raise the awareness of people I know who perhaps have very little understanding about my illness – in fact that’s something I try to do all year round anyway.

But I don’t think continuing with Blogging for ME/CFS Awareness is something I want to do or something that is using our energies effectively.  So I direct you to the Facebook resource for May 12th (you can see that without being having a Facebook account) or encourage you to support a ME group of your choosing in the work that they do.

I see closing this blog as a big positive.  We helped spark a momentum that others have run with and now there’s active awareness groups with a bigger remit and larger support.  The spirit of May 12th (as started by RESCIND and continued with BRAME) was for one day to put aside our differences (cause, treatment, name of condition) and come together to raise awareness.  In the interests of not fragmenting that support I think it’s time to end Blogging for ME/CFS Awareness and join our voices with larger organisations to be heard.

Thank you for your support.

The badges are still available for anyone to use. Please contact me first if you wish to use them for fundraising or commercial purposes rachelcreative@yahoo.co.uk

I’ve made a range of Twibbons from the awareness badges.

You can add a ribbon to your profile picture for things like blogging, Facebook and Twitter using Twibbon. The ribbons are free and allow you to create a unique badge for yourself.

You can find a selection of designs at http://twibbon.com/rachelcreative

By special request I’ve added a new awareness badge en francais:

le 12 mai
Journée Internationale de sensibilisation

<a href="https://meaware.wordpress.com"><img title="me_and_cfs francais" src="https://meaware.files.wordpress.com/2009/03/me_and_cfs-francais.jpg" alt="" width="329" height="329" />


Here’s a new way to be a ME/CFS activist and go beyond raising awareness. The ME/CFS Worldwide Patient Alliance is

“a group of ME/CFS patient advocates who think now is the time for a change. We hope to create this change through an effective, cutting-edge advertisement campaign, specifically to address what needs to be done to improve the quality of life of individuals with CFS, also known as Myalgic Encephalomyelitis (ME). This will be the patients’ voice. It will be our message.”

“”Our campaign aims to highlight the need for more biomedical research, increased public awareness, superior education for physicians and other health professionals involved in our care, and the need for a new name, one that shows the true severity of the illness and not just a single symptom, present in a multitude of other illnesses.”

With support from individuals and organisations such as

One of their first actions has been to place a ME/CFS advertisement in the Washington Post

“Time for the US and UK governments to take the following actions:

  • Provide more funding for biomedical ME/CFS research;
  • Develop a national research and clinical network, as recommended by the federal Chronic Fatigue Syndrome Advisory Committee;
  • Provide funding for XMRV/MLV clinical research in order to sustain momentum;
  • Protect the blood supply and explicitly prevent ME/CFS patients from donating blood;
  • Adopt the Canadian Consensus Criteria for diagnosis and research of ME/CFS;
  • Bring the Centers for Disease Control website in line with the recommendations of leading researchers and practicing physicians in the field of ME/CFS.

Helen has organised a raffle with prizes donated by UK Channel Five.  Tickets can be purchased online and proceeds go to Action for ME

“Ellephantastic Draw in aid of Action for M.E.

Draw date: 3rd July 2010
Deadline to return/buy tickets: 3rd July 2010 2pm 
1st Prize: Red England T-shirt signed by Ian Wright
2nd Prize: White England T-shirt signed by Ian Wright
3rd Prize: Justin Lee Collins book “Good Times” signed by Justin Lee Collins
Plus other prizes including T-shirts (2) signed by The Gadget Show presenters & a set of signed pictures from The Gadget Show presenters
(All prizes have been donated by Channel Five) 
Tickets cost just £1.00 each”

Find out more  at Ellephantastic Draw in aid of Action for M.E.

“It may sound strange…, but longer I live with this condition, more I get confused. I assume it is because I see more complicated facts of the condition.”

Rachel from Blue Coffee Mug offers her thoughts on ME/CFS Awareness Day

“Despite ME/CFS is biomedical condition, majority of medical practitioners do not want to treat it, because of the complexity and it is time-consuming to understand/treat. On top of that, they do not have  relevant information about the condition.

Governments hardly allocate research fund for ME/CFS. Without biomedical research into ME/CFS, we cannot have effective treatment. Some of biomedical researches into ME/CFS are on hold due to lack of funding… And a very little fund is continuingly wasted on psychological researches, which doesn’t give us any treatment. So far, the breakthrough findings about ME/CFS were funded by donation and/or private funding.

Despite of the magnitude of suffering, patients are left without treatment and/or support. Often we educate each other about ME/CFS and possible treatments.”

Read the full post Thoughts on ME/CFS Awareness Day 2010

 Real people, real lives and a really accurate insight into life with ME/CFS:

“What is it like to suffer with ME? Those who are most severely affected can have the most horrible symptoms – paralysis, nausea leading to the inability to eat, hypersensitivity to light, sound, smell, fatigue so intense that they cannot even sit up. Some of the worst affected spend months or even years in dark rooms, flinching at every sound, in constant discomfort and totally dependent. I am fortunate – my illness has never reached this level. Since becoming ill 3.5 years ago I have always been able to look after myself, although sometimes with great difficulty and pain.

I want to raise awareness of people like me, the people who are just well enough to be independent but ill enough to lead a highly restricted and uncomfortable life. For me, ME is not just a list of symptoms [as given above], it is what it has done to my life. I can still study and I could probably work part time, but I cannot take energy for granted. I have to measure my energy out in spoonfuls. If I take too much, I suffer more, but I always want to take more.”

From ME/CFS Awareness Day – James

“I NEVER wake up feeling good. Every day I wake up feeling like I have a viral hang-over. I always have some kind of illness type headache, you know the kind you get when you are coming down with something, I ache all over, somedays more than others, but it is always there and I cannot eat in the morning because I feel so sick. I do not have good sleep and often wake up gasping for breath, not like an asthma type inability to breath but like my throat has closed up or I have been strangled – I think my muscles in my throat are that weak that they just relax to the point of closing.”

From My M.E. Week  –  Beauty

“If you see me looking well – which I do when I’m in public, most of the time;
or see me getting to the supermarket – which I do some of the time;
or if you have a conversation with me and I’m upbeat – which I try damn hard to be all of the time;
you cannot be expected to understand the reality.

I have tried to be a bit more explicit, but when I mention how exhausted I am – you might say, oh yes I’m tired too…”

“To argue that my exhaustion is so deep it is like a coat of lead that I wear 24 hours a day – that prevents me getting out of bed, that means I hurt to wash my hair and hang out my washing because my arms have to be held up, that means I pant after going up the stairs and need a rest after washing, then after dressing, then after eating my breakfast…

To explain that it is hard to get things done because my brain doesn’t work properly any more. You know how you feel when you’re hung over? Like your head is full of wool and your body is poisoned? That is my normal state. I forget things that used to be second nature. I struggle to make a cup of tea if you’re talking to me, to hold a conversation without losing my thread, to write a blog without wanting to smash the computer because I keep getting words wrong, to run a bath without putting the wrong tap on and flooding the house, to put toothpaste on the brush and not Veet.”

From My ME – Ros

Dots and Yarns has shared a photo essay of a normal day with ME and a positive attitude

“Usually, on the 12th of every month I participate in the ’12 von 12′ pictures of the day – and I will proceed to to that, but 12th May is a very special day for me. It’s International CFIDS/CFS/ME Awareness Day. So for this ’12 von 12′ I will try to paint the picture of what it means to live this illness…”

See the photos at 12 von 12 on CFIDS/CFS/ME Awareness Day – Dots and Yarns

Maggie at Liverpool Leftovers has been reflecting on those with ME who face the loss of their personal lives, something that isn’t often written about.

“But I know of so many people with this DD (Damned Disease) who live alone, who cannot get out to meet with potential partners and friends, who have to face the possibility of never sharing their lives with anyone.

Meanwhile we are all left with clinics run on psycho-social theories that do not address the effects of this illness even in psycho-social terms.

I delight to have the joy of twin grandsons, but I despair that many of my fellow patients will be deprived of this joy in their lives.

It’s time the MRC and NICE woke up to the fact that around 250,000 people in the UK are not only lost to the work place, but also are losing out on one of the most important aspects of their lives – their family lives.”

From International ME Awareness Day 2010 – Maggie, Liverpool Leftovers

“Those of us with ME know how to hide our disability as best we can until it reaches the point where we run out of energy and we start to slip through the cracks.”

Laura Ann Dunks explains what it’s like to live with ME and just how disabling an illness it can be:

“There are 250000 people with ME in the UK. Most people have a relapsing and remitting illness, where they can manage to stay fairly stable if they stay within their own boundaries. If they exceed those boundaries, whether it is to sit up in bed, or cycle round the block, then they can very quickly because very exhausted, weak, unable to move, or to explain what is wrong. This will then cause them to relapse and within the next 24 hours or longer they will become far worse than they were before they did too much. However, a small proportion of people have a progressive illness where by everything they do is too much and they get continually worse. Some patients appear to improve as long as they don’t overdo it, with some patients going in to remission and being able to live normal lives for a period of time. However, studies have shown that only 2% of patients recover completely.”

From May 12 is ME/CFS Awareness Day – Laura Ann Dunks, The Voice Within