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ME/CFS SOUTH AUSTRALIA INC

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Retired church minister from Yate 'used to sleep for 22 hours a day'

Wednesday 18 January 2012

 

From UK newspaper the Gazette:

 

GazetteRetired church minister from Yate 'used to sleep for 22 hours a day'

By Alexandra Womack »
2:30pm Wednesday 21st December 2011 in News

A RETIRED church minister from Yate who used to sleep for 22 hours a day has spoken of how she coped with chronic fatigue syndrome.

Mary Hart, of Sundridge Park, was forced to reduce the 80 hours a week she was working as a Methodist minister at Zion United Church in Frampton Cotterell. In 2005 she had to take an early sabbatical when she could not get out of bed for weeks on end.

Mrs Hart, 60, told the Gazette: “I knew I was tired but I just thought it was because I was working far too much. But one day I burst into tears and just could not stop crying.

“I was diagnosed with Myalgic Encephalomyelitis (ME) quite quickly and initially I was euphoric as it meant I wasn’t going mad and I didn’t have cancer or a brain tumour.

“But after 18 months of seeing a specialist I was discharged and told there was nothing they could do for me. I went from living a very active life to basically being housebound.”

At her worst, she was sleeping all day and woke only to eat. She did not have enough energy to go out and see family and friends and even found phone conversations difficult.

“Everything ached,” she said. “Although I was sleeping it was very low-level sleep and I was literally walking around in tears all the time.”

Mrs Hart, who has two adult children and lives with her husband Alan, 64, was referred to one of only 40 specialist centres in the UK at Frenchay Hospital. There she learnt to limit her sleep gradually and to deal with her illness.

“They taught me to monitor my sleep and if I got a good night’s sleep I was much better the next day,” she said. “They helped me cope and as soon as I walked in to the centre I felt better, with someone to talk to who understood.

“ME is an invisible illness. It is not cancer and people always say but you look so well. I ended up just not seeing people.”

Mrs Hart believes she has been healed after attending a retreat centre in Wales and is now enjoying her retirement. She has recently begun volunteering at Frenchay Hospital where a study into ME is due to get underway next year.

A team of occupational therapists, physiotherapists and clinical psychologists are looking into whether early intervention, changes in behaviour and using exercise could lesson the effects of the illness. The £250,000 study will involve 100 patients.

Clinical psychologist Dr Hazel O’Dowd said: “Because of the nature of the illness it can take upwards of four years to diagnose ME and during that time people can go rapidly downhill because they are not getting the right treatment.”

Last week it was claimed that ME affects one in 100 pupils in the UK. A study by Bristol University followed 2,855 pupils at three schools and found 28 missed school with chronic fatigue syndrome.

 

The above, with comments, originally appeared here.

 


 

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