A Band-aid on a Bullet Wound (part one)

Hello Friends, 

I'm here today to talk about the approach of the NHS on M.E. patients. I personally think that it's utterly ridiculous, inadequate and it makes me really angry. I went to the doctors today, and although he was more helpful, and finally agrees that I have a physical illness with some mental/emotional symptoms rather than a mental illness with physical symptoms. Which I consider a massive breakthrough. He wants to speak to the 'Enablement Team' where my occupational therapist is based, as she has a better picture of my condition than he does, which is fair enough. He is going to wait before trying any new pain killers as he thinks 'pain-modifiers' may be more effective. 

The term 'chronic fatigue syndrome' is the first thing I want to flag up. This umbrella term for several illnesses where persistent fatigue is one of (but nowhere near the only) the symptoms. Since the term came into common use by medical professionals, people with myalgic encephalomyelitis (M.E.) have been mistreated, misdiagnosed and even tortured in some cases, because of the apparent confusion between the terms M.E. and CFS. The problem with the term CFS is that it's like calling Alzheimer's 'chronic forgetfulness syndrome,' it's naming an illness, or group of illnesses after one of it's main symptoms, not taking into account the organic properties and many other, disabling symptoms. M.E. is a distinct neurological illness, rather than a medically unexplained fatigue state; as is portrayed by the term CFS. This bogus category doesn't just affect those with M.E. though; anyone who's had the misdiagnosis of CFS will be mistreated; people with MS, cancer, and many other illnesses where fatigue is one of the predominant symptoms. M.E. is to fatigue, what a nuclear bomb is to a match. 

When someone with M.E. is misdiagnosed as having CFS, the treatment (or lack thereof) they receive is inappropriate  and makes them a lot more ill, in some cases causing death. The two main treatments for CFS in this country are graded exercise therapy and cognitive behavioural therapy. Graded exercise therapy focuses on increasing the activity one does over time, regardless of your relapses, M.E. symptoms and limitations. Cognitive behavioural therapy focuses on changing your thought processes in order to 'break the negative cycle.' The problem with CBT is that it gives the impression that M.E. is a psychiatric illness, and that patients need to 'snap out of it.' I will write a more detailed blog post about how damaging CBT is to M.E. patients. 

I am too fatigued to finish this post, but I will write a part two when I have the energy.
Love, Alice xxxx

With thanks to The Hummingbird foundation for M.E. and Giles Meehan, their videos helped me write this.
© Alice Daley 2013