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ME/CFS Awareness, 1 Nov 2017

ME Awareness Hour
This entry is part 2 of 4 in the series ME/CFS Awareness

Every Wednesday evening I take part in an online event called ME Awareness Hour. The event takes place on Twitter and it’s goal is to raise awareness for ME/CFS by tweeting and retweeting posts about life with ME/CFS and any recent scientific publications or media coverage on the illness.

I love being a part of something like this because it gets people’s attention when we work together and make some virtual noise all at the same time. Continue reading

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ME/CFS Awareness, 8 Nov 2017

ME Awareness Hour
This entry is part 3 of 4 in the series ME/CFS Awareness

I have a date tonight – with Twitter! Every Wednesday evening I spend an hour on Twitter, along with a bunch of other ME/CFS warriors, taking part in ME Awareness Hour. It runs from 8-9pm (London time) every Wednesday evening. You can join in the fun too, we’d love to have more advocates taking part!

We post memes, links to research or media coverage, personal experience, all sorts of things that will help shed some light on what life is like with this debilitating illness. We tweet and retweet for an hour, our hope to to make #MECFS trend on the front page to get the most attention we can. I hope you will join us, even if you only retweet other people’s tweets. Come find me on Twitter at: chronic_hopeful

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How You Can Help The Millions Missing Worldwide

Photo of hundreds of empty pairs of shoes in a town square representing th millions of ME/cfs patients missing from society. Title reads, How you can help the Millions Missing, Myalgic Encephalomyelitis awareness and advocacy,by Chronically Hopeful
This entry is part 1 of 4 in the series ME/CFS Awareness

Although May 12 is ME Awareness Day, a global day of "Millions Missing" protests and demonstrations by people with ME, their carers, family and friends, many patients are too ill to leave their beds and would be lost and hopeless if not for the able bodied supporters who take their places at these rallies and make some noise for those of us too ill to do it ourselves.

I have recently been asked by a few healthy friends how they could practically help our cause. So in this post I will list some ideas and links to other initiatives that would greatly benefit from any support you can give. 

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Get Your Own Personalised Millions Missing Poster For ME Awareness Month

#MillionsMissing Personalised poster for ME awareness. How to get your own millions missing poster
This entry is part 4 of 4 in the series ME/CFS Awareness

#MEAwarenessMonth is coming up in May and I thought, since many of us cannot go to the live events in person, I'd like to help my fellow people with ME (pwME) to raise awareness online​ by offering you personalised Millions Missing posters​!

​I know ​you ​are an incredibly creative and driven group of people, but I also know that many are too ill to use their skills and talents as they would like to and cognitive dysfunction as well as physical incapacity often makes ​using a device or learning new things very difficult. So I hope this free community service will be helpful to you. ​

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