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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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"M.E.? What's that?"

Messages
53
Location
UK
Bit of a rant. How, in 2018, is it still possible that so many people have never even heard of M.E. let alone know what it is? I've just come back from an appointment at my local hospital, and while there I needed to ask for a porter to take me from reception to the appointment room in a wheelchair (and back again). All of the staff I spoke to asked me what was wrong with me.

The receptionist who organised the wheelchair for me had never heard of M.E.
The first porter had never heard of M.E.
The second porter had never heard of M.E.
The clinician I had the appointment with had never heard of M.E.

These are people who literally spend their working life in a hospital talking to patients. It honestly blows my mind that not one of them had heard of the illness that made me need the wheelchair.

Is it really that rare? What's the deal here?
 

tinacarroll27

Senior Member
Messages
254
Location
UK
Most people know it as Chronic fatigue syndrome or cfs or
cfs/me. If you say ME most people look blank at you and don't know what you are talking about. When I say chronic fatigue syndrome people get it but cfs has a lot of stigma attached to it I find. People then think you lazy or crazy. I say ME but I usually have a lot of explaining to do and I have found doctors don't like it. My GP hates me using ME and always refers to it as Chronic Fatigue which gets me angry.