Bonjour,
Every year the 8th August is designated as severe M.E. awareness day.
It was started by the 25 per cent ME group in 2013. The day 8th August was chosen to honour Sophia Mirza, a severe patient who died of the disease. In 2019 the ME Association marked Severe ME Awareness Day for the first time.
In my blog today I've decided to share the story of Tess who went from being mild to having severe M.E. Her story is probably not unique.
She contracted M.E. in 2009 after Glandular Fever and was mild at first. She was someone very active but it all started to fall away bit by bit. She fought as long as she could against this rapid decline. However, GET (graded exercise therapy) and CBT (cognitive behavioural therapy), as originally recommended by NICE, plus poor medical advice led to a slow progression to moderate and finally severe M.E. by 2021. Since then NICE have reviewed and updated their advice.
If only Tess had been given the right advice and help then maybe she would not have developed severe M.E. How many more followed the same bad advice which led to a deterioration in the level of their health?
Tess is a very talented lady. She writes poetry and is artistic. I have helped her to put together her poems with her creations. I will share a few of them in this blog. This first one is about the aftermath of a bath.
Tess was a nurse for 40 years, 33 years anaesthetic nursing. She had an incredibly full life - endurance horse rider/owner, martial artist, biker, artist, pet owner, gardener, reader, wife, granny.
And now she is housebound, mostly bedbound, confined to a dark room.
This is her next poem and relates to the change in her life.
On this day, I hope that others who still come across anyone in the medical profession who proposes GET and CBT they will refuse to follow such harmful advice. Severe M.E. and very Severe M.E. are most probably the result as was the case for Tess.
