Living With ME: a video

In which I make a video for the first time and talk a little bit about how it feels, with really bad visual and audio (sorry). Also sorry about the lack of subtitles, it seemed really complicated to add them and I'm so tired. There is a transcript below though.   https://youtu.be/Z2aoW6NV2tg   Transcript 00:00 … Continue reading Living With ME: a video

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I’m Back – And I’m Tired!

In which I ramble about the last three months (nearly). It doesn’t seem like such a long time not to be posting, but it’s been strangely hard to get back into writing here. So in this post I’m not talking about any topic in particular, but just making a summary of what’s been going on … Continue reading I’m Back – And I’m Tired!

Severe ME Day 2018

Severe ME Day was begun as a way and a time to remember those who have died from ME/CFS. It is held on the 8th of August because that was Sophia Mirza’s birthday: she was one of the first people in the world to have Chronic Fatigue Syndrome listed as the cause of death on … Continue reading Severe ME Day 2018

Living With ME: A Bad Day

Reading this back, I see that I mentioned going to the toilet a lot. The reason for this is that it was most of the activity I did on this day! Plus, one of my ME/CFS symptoms is a constant slightly-rough throat, which means I tend to drink a lot. 10.15  I wake up. It … Continue reading Living With ME: A Bad Day

Yes, People Die From ME/CFS

Content warning: I talk in this post about suicide and assisted dying. The first recorded death from ME/CFS in the UK was that of Sophia Mirza in 2005. Not that long ago, you will notice, and she suffered some pretty bad abuse from the medical profession before it happened. Recently, another family have spoken out about … Continue reading Yes, People Die From ME/CFS

The Prevention of ME/CFS?

ME/CFS can’t be prevented, we all know that. But do we? Certainly it isn’t something that medical professionals talk about, or ME/CFS advocacy and patient support groups, and equally certainly there is no proven method of prevention. I, personally, don’t believe that that means it isn’t possible. I think that we can protect ourselves, at … Continue reading The Prevention of ME/CFS?

12 Things Chronic Fatigue Syndrome Has Done To Me

One day perhaps I’ll be all mature and balanced, and write a post called “12 Things Chronic Fatigue Syndrome Has Done For Me”. Today, however, I’m writing about what the experience of ME/CFS is like for me and the changes it has made in my life. 1  General fatigue  Then: I would walk three miles … Continue reading 12 Things Chronic Fatigue Syndrome Has Done To Me