Category Archives for "M.E. Awareness"

ME/CFS Awareness, 8 Nov 2017

ME Awareness Hour

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

ME CFS Flares, How to cope BLOG

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 all agree on a few things: ME/CFS is life draining, heavy, isolating, painful, lonely, misunderstood and just plain horrible to deal with. And none of us would ever choose to have it or wish it upon our worst enemy.Continue reading

ME/CFS Advocacy – Awareness Pictures To Share, part 1

Title reads, M.E. Awareness Pictures, What it's like living with Myalgic Encephalomyelitis.

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 for advocacy purposes, so feel free to share them online. 

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Why I don’t go to A&E when my ME/CFS flares

Why I don't go to emergency room for ME CFS flares BLOG

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 often an unnecessary risk to your own health. Let me explain why I think so…Continue reading

12 Tips To Help You Adjust After An ME, CFS Or PVFS Diagnosis

A man sleeping next to his dog. Title reads 12 tips to help you adjust to your new normal. Are you struggling to adjust after your ME / CFS diagnosis?

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 the management of CFS and are often ill-equipped to give advice to newly diagnosed patients.

In this post, I will outline some of the main points you need to be aware of as a newly diagnosed patient. Things your GP might not tell you. I am not a doctor, but I am a patient, and I have spoken to many other patients with decades of experience in living with this condition.

Doctors call these long-term sufferers "expert patients" and the advice they gave was vital in my initial stages of PVF/CFS. I will summarise that wisdom below in the hopes that it will help many more.

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