What is ME?

ME is Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome (CFS). Find out more here

Why support ME research?

Research into ME and a cure is poorly funded – there are about 250,000 people with ME/CFS in the UK and it’s estimated the research spend is at about £40/patient. MS, in comparison receives about 20 times more funding worldwide yet is less prevelant. An interestingly bit of history – MS and ME were considered the same disease until about 15-20 years ago.  

It’s not well understood what causes ME and I’m hoping research can find a biological marker so you can be tested for it and then further research into what it does to the body and cells that means the body finds it so hard to create energy.

In the meantime – it’s working out what’s best and trying to accept it and make the best of things.  

​With the recent lockdown due to Coronavirus there are stories how lots of people may find that they are diagnosed with ME after struggling to recover from Covid-19. I don’t envy them. It’ll be life changing …

With this in mind – I’m making face coverings and will be selling them to raise funds for the ME Association.

All opinions and musings in my blog are my own


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Previous Blogs – Musings and Opinions all my own

  • It’s murder on the patio floor when ME/CFS collides with logic
    I like logic.  I like maths – I get it and it makes sense.  1+1  = 2. I think that’s why I find ME/CFS so challenging at times.  It goes against what I learned at school, my engineering degree and […]
  • Back to Black – Lives matter so let’s talk drug dealers and words. Language matters.
    So it’s almost 6 months since I didn’t post a Black Square and I didn’t speak up.  I learned a new term ‘Race Adjacent’ thanks to a North American based cousin who read my blog post.  We hear a lot […]
  • Going into battle to Make Every Poppy Count and support research into ME/CFS and Long-Covid
    As a generation or two –  a lot of us in the UK haven’t been through the experience of war and the subsequent consequences.  We’re a lucky generation – spoilt perhaps.  Blessed.   However we’re a generation that’s going through a […]
  • The kids busted out of homeschool and I learned that I still boom and bust!
    When Coronavirus/Covid-19 hit us in March 2020 – I felt like I had been in training for it as I’d been in a mini lockdown of my own for the last few years.  However my children had a different experience.  […]
  • Pacing – getting into first gear
    So did you write down a list of activities? Nah – you didn’t right because you’re just reading this blog to research about Pacing and how to Pace?! ( I’ve been there). However if you have a list of your […]
  • Pacing – getting started and into the driving seat with ME/CFS
    So let’s talk about Pacing and how to get started and regain some sort of control over this thing called ME. But before that you’re asking – what is Pacing? Well I’m not going to try and define it when […]
  • Life changes with Minecraft – I’m learning about Realms, Bedrock vs Java, Mobs, etc!
    With ME/CFS – we all learn new terms and phrases. It was is a learning experience – a new term I’ve heard about recently is LDN (Low Dose Naltrexone) from a North American buddy. I’m currently going through a similar […]
  • Learning to Rest – we’ll talk about Pacing next time
    What is Pacing? Rest? Unfortunately with ME there isn’t one magic pill or treatment to help us get better – less ethical individuals may claim there is.  Such is the nature of an illness where individuals with similar symptoms yet […]
  • Living in a Box … Living in a Cardboard Box …
    I’ve been ticking one box my whole life and it’s hard to consider that, with the way ME affects my life, I might be ticking another one – sadly the fact is that I’m not as able as I used […]
  • I’ve spent the last 3 years training for this lockdown marathon!
    I keep wondering to myself – why now, why start writing about my experience with ME and sharing it more publicly? Why attempt to fundraise and homeschool at the same time? (although let’s face it not a lot of home […]
  • Wow – what a response!
    We’ve almost raised £500 already! ✋👊👍 Thank you so much and it’s spurring me on to keep sewing and raise awareness and raise more funds! (Believe it or not I’ve got a big grin on my face under the mask […]
  • Why buy these Face Coverings?
    Firstly because they’re in aid of research into ME which is a really poorly misunderstood disease – I mean I sort of believed it was an illness of sorts but get some rest, de-stress a bit and you’ll be get […]
  • You’ll need one to Uber …
    Face coverings – are they going to become the new norm? You’ll now need one to get an Uber or an Addison Lee – phone, keys, face covering – check! Well in SE Asia – they’ve adapted and are wearing […]
  • Kindness on the curriculum
    What do you do when life deals you one of those and your whole frame of reference is shaken? Over the last 3 years it’s been like that for me – it’s been a ride and a half and always […]