One of the most frustrating and debilitating symptoms of ME/CFS is the shaking and trembling after minimal exertion. Something that healthy people might get after a strenuous exercise. I was lying in the bath relaxing last night when I felt the shakes coming on. This is what I get for walking just a few steps to the bathroom and getting undressed. I started feeling a bit of the internal tremors at that point, I imagined it might come to the…
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…
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…
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…
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…
Ever wondered where to find ME 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 ME 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…
I often see people with ME/CFS writing about how they have spent hours in the emergency room only to be completely disappointed, misunderstood or even disbelieved. They go to the emergency room because they are feeling so weak and exhausted that they don’t know where else to go or what to do, they’re scared because they feel so utterly ill. I understand the fear that leads you to that conclusion, it’s scary to lose control of your body, but it’s…
I am regularly contacted by people who have recently been diagnosed with Post Viral Fatigue or Chronic Fatigue Syndrome. They are often scared, worried and confused, but also hopeful and determined to return to their normal life. Their question is usually the same: what can I do? Having a diagnosis of PVF or CFS is difficult to deal with because there is so little information out there and often doctors don’t know what to tell you. They haven’t been trained…
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…
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…
