M.E. MYALGIC ENCEPHALOMYELITIS AWARENESS WEEK 6th-12th MAY. 2019…

ME Awareness Week will run from 6th to 12th May 2019 with many activities focused on ME Awareness Day itself (Sunday 12th May). The focus of the ME Association’s awareness campaign for 2019 will be the Real M.E.

Promoting REAL stories and photos from REAL people, telling the world about the REAL disease that is M.E!  We’ll be sharing many of the hundreds of photographs and stories that you have sent to us, showing how this cruel disease can vary so much in intensity and severity both from person to person and even from one minute to the next for each person affected.

ME Association fundraisers are busy working up their madcap ideas for how they will Go BLUE in 2019.

Why BLUE?  Because blue is the internationally accepted and recognised colour of M.E. Awareness. How you GO BLUE is entirely up to you… How far you go BLUE is also entirely up to you. Just do all you can to colour in this cruel invisible illness….

Here are some ideas from ME Association -BLUE faces, BLUE hair, BLUE nails, BLUE themed raffle, BLUE profile photographs on social media, BLUE tongues, BLUE balloons tied to garden gates, Bake sales, plant sales, tea parties, supermarket and shopping centre collections, walks, concerts, orienteering, fun days… of perhaps a virtual BLUE Sunday.

People with M.E. disappear from society and can easily be forgotten and overlooked. Our mission for ME Awareness Week is to rectify that with our Real M.E. campaign. With your help.

Please share REAL stories and images far and wide between 6th and 12th May.

Myalgic Encephalomyelitis (M.E.) is a long-term (chronic) fluctuating illness that affects many parts of the body, more commonly the nervous and immune systems. It may be diagnosed as Chronic Fatigue Syndrome (CFS).

What is M.E.?

Symptoms vary from person to person but can include:
Physical and mental exhaustion (fatigue), which feels very different from ordinary tiredness
Post-exertional malaise: this means that any physical or mental activity can bring on an increase in symptoms, but not straight away
Intense muscle or joint pain
Inability to speak or concentrate
Extreme flu-like symptoms
Sleep disturbance
Dizziness and/or nausea
Hyper-sensitivity to light and sound.

Many people still believe that M.E. is all in the mind. This is simply untrue. Research has found potential biomarkers (physical evidence) for M.E. but much more research needs to be done to confirm the cause (or causes) and a cure.

Why should you care?

M.E. can affect anyone. It doesn’t care how old or young you are, or where you come from. People of any age, including children, can get M.E. It currently affects 1 in 250 people in the UK alone.

Some manage to struggle on with their lives. Others spend most of their time bedbound or housebound, unable to perform basic functions unaided.

One of the biggest frustrations expressed by people with M.E. is that family, friends, the media and even doctors often don’t believe their illness is real, or fail to understand just how debilitating it is. With your help, they can change this.

 

 

7 thoughts on “M.E. MYALGIC ENCEPHALOMYELITIS AWARENESS WEEK 6th-12th MAY. 2019…

  1. Before being diagnosed with CFS (ME) and Fibromyalgia I admit that I was very sceptical that this condition was real. I thought it was more a MH condition. I now know it’s real and not all in your head, this is a condition which has control over your body and in turn can have an affect on your MH. So little is understood about CFS (ME) and trying to explain it to family and friends is very difficult because you can have a bad day and the next be relatively ok. My mother-in-law believes if I diet, exercise and go out more I’ll be cured! Trying to explain to her that those things won’t cure it is so difficult so I just stop trying. It’s taken over my life to the extent I don’t work, socialise too much, leave the house, exercise. Even a shower can wipe me out! I just don’t recognise myself these days and my husband and daughter don’t either but they love me and support me. As for treatment there are none and I’ve only been offered strong painkillers, antidepressants and a GP referral to the gym which I did try but wiped me out for days! I don’t think my GP really understands CFS and Fibromyalgia, so what help do I have in trying to manage my conditions from the health professionals in my area – NONE! You have to research yourself, go to groups and chat with others with your condition because they know the most and have best practical advice and most importantly they understand you.

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    • Michelle, I’m so sorry to hear you are suffering so badly on your own but it’s a blessing your direct family understands. When I started writing this blog in 2007 I had already undergone four spinal surgeries so everyone understood that side of things but when I was diagnosed with Fibro I felt quite alone. My blog was my escape route to somewhere else where I made friends and had support on my bad days. I bet you felt a slight lift after writing this post in anticipation that someone who understands it will read it? Well, I do understand you and I’ve read it and if it had helped you one tiny bit then please post again to me. If it would help feel free to write something I could add as a guest post of an ME and Fibro sufferer. Join my Facebook support group and follow my Facebook page as you just never know someone may have written about something that has helped them and might help you. I have an amazing Pain Consultant who truly ‘understands’ and I have regular injections for some of my pain. It was lovely to hear from you and do post again. Take care, Barbara

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