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MAIMES: Medical Abuse in ME Sufferers

As anybody with ME/CFS and their carers will know, many doctors and health care practitioners still treat ME as a psychological disorder, when in fact it has been proven to be physiological. Patients have been dismissed for decades, disbelieved, misunderstood and symptoms ignored. The current treatment recommended for ME/CFS patients is CBT (Cognitive Behaviour Therapy, a type of psychologically based talk therapy) and GET (Graded Exercise Therapy, a controlled exercise program). This came about due to findings that came out…

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ME Awareness Hour

ME/CFS Awareness, 15 Nov 2017

As you might know by now, I spend every Wednesday evening on Twitter, along with many other ME/CFS warriors, taking part in ME Awareness Hour. It runs from 8-9pm (London time) every Wednesday evening. We tweet about what life is like with this life draining illness. We tweet and retweet for an hour, hoping to to make our hashtags trend on the front page of Twitter so we can get the most attention possible. I hope you will join us, even…

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ME Awareness Hour

ME/CFS Awareness, 8 Nov 2017

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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…

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ME CFS Flares, How to cope BLOG

ME/CFS flares: what do they feel like and how to cope

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People with ME all suffer at varying degrees, we cannot compare our flares to somebody else’s. What one considers an ME/CFS flare another considers just another regular day with ME. What one person with ME considers a normal day, might be somebody else’s idea of torture. Once thing they all have in common is that everybody’s battle is devastating. We learn to acknowledge and respect everybody’s pain and everybody’s victories, because despite not fully understanding each other’s experiences, we can…

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a close up shot of forget-me-not flowers

ME/CFS Awareness Pictures To Share, Part 1

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Ever wondered where to find M​E awareness pictures to share? Myalgic Encephalomyelitis is a very misunderstood illness, ​so ​my aim is to empower ​people with ME or CFS to raise awareness, share their own ​experience and to educate the public about the condition. In this series I will be sharing M​E awareness ​pictures that I have created and shared on social media ​and I’ll elaborate on each topic here on the blog. ​All these posts and graphics have been created…

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Man holding his head in his hands. Title Reads, Where to get help when you feel like giving up. Helplines & Prayer Partners available 24/7 Worldwide.

Do You Feel Like Giving Up? Where To Get Help When You Can’t Cope

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In the chronic illness community, I have found some of the strongest people you will ever come across. They are warriors who fight many battles daily, often against their own bodies or minds, just to get through each day. As much as there is hope and strength, there is also a lot of neglect and isolation. It is natural in these lonely and scary times to feel like giving up. I often come across people who are losing all hope,…

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A bed with lots of pillows in front of a blue wall. Title reads: The Effects of M.E. awareness campaign featuring quotes from people with M.E.

M.E. Awareness Campaign: The Effects Of Myalgic Encephalomyelitis

In 2017 I created the “Effects of ME” campaign for ME Awareness month in May. Quotes were collected from patients about how ME affects their daily life and I then used those quotes anonymously to create impactful graphics which the community could share during the online awareness campaigns. The campaign continues to run to this day, with new quotes trickling in all the time. The graphics have been very well received in the M.E. community and continue to be shared…

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A lady with bed head, looking exhausted. Tital reads, Are you a chargie or a spoonie? Both analogies for chronic exhaustion explained.

Are You an Unchargeable or a Spoonie?

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People often wonder what we mean when they hear us talking about spoons or that we are a spoonie or unchargeable. These are words I never used before joining the world of the chronically ill and disabled. In this post I will try to explain the meaning behind these terms and which one I identify with most. How To Know If You’re A Spoonie Or A Chargie Both these terms refer to our body’s inability to produce enough energy. People…

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A woman carrying a bucket of cleaning products. Title reads: Don't do your best, do less. How to avoid the boom and bust cycle.

Don’t Do Your Best, Do Less: How To Avoid The Boom And Bust Cycle

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Anybody who has ME or CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) will be very familiar with the boom and bust cycle. ME’s main characteristic is Post-Exertional Neuroimmune Exhaustion (PENE) also commonly referred to as Post Exertional Malaise (PEM). Feeling really ill, weak and exhausted after any physical, emotional or mental exertion.  This means brushing my teeth, getting excited about a visitor coming, answering the phone or writing this post is exhausting and will cause an increase in a variety of symptoms.…

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Man in a wheelchair with his hand on the wheel. Title reads: Not all disabilities are visible. International day of people with disabilities.

International Day of People with Disabilities: Not All Disabilities Are Visible

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December 3 is International Day of People with Disabilities. It’s a great opportunity to raise awareness and make some noise all over the internet (and in real life) if you can manage it. The message I want to get across this year, is that not every disability is visible. There are many conditions that do not display any outward signs of illness or disability, but they are just as debiitating as any condition you can clearly identify. Leading A Double…

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