May 12 is International ME/CFS and FM Awareness Day, and throughout the month I am sharing posts which shed a bit more light on these misunderstood illnesses. For more, check out #May12BlogBomb, #MEAwarenessDay and #MillionsMissing on Twitter and Instagram.
One of the most common misconceptions about ME/CFS is the difference between the specific illness, chronic fatigue syndrome (myalgic encephalomyelitis) and other types of fatigue. This simple misunderstanding snowballs into real challenges for ME/CFS sufferers, who have to contend with people’s assumptions that they are not seriously unwell, but just tired. Continue reading ““Chronic fatigue” vs chronic fatigue syndrome”
May 12 is International ME/CFS and FM Awareness Day, and today bloggers are joining together in a #May12BlogBomb to raise awareness of these illnesses. I should be writing about the what ME/CFS really is, the debilitating symptoms, the research. I should be valiantly trying to raise awareness for this condition that has ruined my life, and many others. But I am heartbroken and cannot.
2016 brought exciting news for ME/CFS patients. The researchers behind the PACE trials were finally forced to release their raw data, which revealed that their initial conclusions – that graded exercise therapy and cognitive behavioural therapy were the only effective interventions for ME/CFS – were unsubstantiated.
Usually the retraction of positive results would not be cause for celebration. But the PACE trial was not only unethically conducted, it contained numerous methodological errors, drew conclusions which were not supported by the evidence, and promoted therapies which are greatly harmful to ME/CFS patients. It was only due to those same patients’ dogged research and tenacity in the face of abuse that the truth was revealed. Here’s how it happened.
Courage is resistance to fear, mastery of fear, not absence of fear
Marge: Everybody’s afraid of something.
Homer: [smugly] Not everybody.
Marge: Sock puppets.
Homer: [shrieks in terror] Where? Where?
A friend recently remarked on how surprisingly blasé I seemed about the possibility of getting worse. “You could become seriously unwell again – and you don’t seem concerned at all!” The fact is, I am always concerned about the prospect of relapse. The thought that one day I could wake up and be totally paralysed is a permanent backdrop in my mind, and it is utterly terrifying.
Recently I was lucky enough to have two pieces of my writing published. The first was for a popular Australian lifestyle website, Mamamia, entitled, “Seven things you probably don’t know about chronic fatigue syndrome.” I was very grateful for the opportunity to share my experience of ME/CFS with a wider audience, and it was well-received within the Aussie ME/CFS community.
If you have anything to do with the ME/CFS community, you can’t have missed hearing about Jen Brea’s TED Talk. Her speech, “What happens when you have a disease doctors can’t diagnose”, was the first of its kind to address ME/CFS. If you haven’t already, I would highly recommend you watch the whole video – Jen is an engaging speaker, and in 17 short minutes, she covers nearly every issue facing ME/CFS sufferers today.
However, I know that not everyone has the time in the day to watch a 17-minute video, and many ME/CFS patients cannot watch video or listen to speech at all. (If this is the case, and you still have the ability to read longer texts, I would recommend looking at the transcript of the speech.) So just for you, I’ve picked out my top ten take-aways from Jen’s speech. Continue reading “10 take aways from Jen Brea’s TED talk”
Last week, I talked about how people with disabilities can be “othered” and presented as different to, and therefore less than, the rest of society. Othering – the characterisation of a certain group of people as intrinsically unlike the “rest of us” – can occur in a myriad of ways, but perhaps the most obvious example is media representation.