|
ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
Disclaimer
ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
| Become a Member | ||||
|
||||
Chronic Fatigue Syndrome Sufferers Hope For Breakthrough As They Fight For Recognition
Sunday 5 July 2020
 Sonya Chowdhury, Sally Howard and Tanya Marlow are among those hoping that a new genetic research can help ME sufferers. |
Chronic fatigue syndrome sufferers hope for breakthrough as they fight for recognition
DecodeME, the world’s biggest genetic research project into CFS, will examine the DNA of 20,000 people frustrated by misunderstandings of their condition.
On a good day, Tanya Marlow can sit up for three hours before needing to lie down again. Bedbound for 21 hours of the day, the 41-year-old writer tries to sit up for dinner but sometimes she can’t.
It wasn’t always like this. A bout of glandular fever when Marlow was 17 never seemed to leave, and eventually she was barely able to walk. In 2007, she was diagnosed with myalgic encephalomyelitis (ME), or chronic fatigue syndrome (CFS), a long-term, often debilitating, poorly understood condition affecting about 250,000 people in the UK.
“In 2007, I walked up a mountain,” Marlow tells i, “and the next day I could walk 10 minutes and then my legs collapsed. The next day I could do five minutes and then my legs collapsed.” She says the graded exercise therapy recommended by the NHS made her far worse. Then giving birth caused a severe relapse. “I was more helpless than the baby I was supposed to look after.”
Cognitive problems, often referred to as “brain fog” by patients, are also a symptom. “I would listen to someone talk and it was like they were speaking French,” says Marlow. “I could pick out the odd word but not arrange them in a meaningful way.”
blog comments powered by Disqus
Previous Page |
Registered Charity 3104
Email:
sacfs@sacfs.asn.au
Mailing address:
PO Box 322,
Modbury North,
South Australia 5092
Phone:
1300 128 339
Office Hours:
Monday - Friday,
10am - 4pm
(phone)