Post Seventeen – The PACE Trial Scandal

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From the Blog, puffins&penguins&me

 

I have been wanting to write about The PACE Trial for some time, about the background, the controversy and where we are at today. I have tried, but unlike my usual posts it is very technical, involves a lot of research and there’s a lot to cover. I just don’t have it in me, with my brain fog and inability to really concentrate, it’s just too much. Luckily, this morning, a UK newspaper published a really informative and accurate article on the very subject, basically, the journalist in question, Jerome Burne, has done my job for me.

This article was in the most surprising place, The Daily Mail Online. Not only did The Daily Mail publish a good article about ME, but they referred to the illness as Myalgic Encephalomyelitis (ME), this is actually quite ground breaking stuff. Most mainstream articles refer to it as Chronic Fatigue Syndrome (CFS), which isn’t officially inaccurate per se, but CFS is, on the whole, very misleading.

For the uninformed, it implies that this illness is simply ‘fatigue’, it perpetuates the myth that we are ‘just tired’. I can’t think of any other major illnesses that are named after only one of their symptoms. A symptom of Multiple Sclerosis is fatigue, but it isn’t called Chronic Fatigue Syndrome. A symptom of Lung Cancer is coughing, but it isn’t called Chronic Coughing Syndrome. A symptom of Alzheimer’s Disease is memory loss, but it isn’t called Chronic Forgetfulness Syndrome. I think you get my point.

 

To read the rest of this story, click on the link below:

 

Link to PACE story

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