Polegate parents look to raise awareness of daughter’s ‘very severe’ condition

Heather and Michael Gordon care for their 37-year-old daughter Karen at home as she deals with ME (myalgic encephalomyelitis), which is also known as chronic fatigue syndrome.

The NHS said common symptoms include feeling extremely tired all the time, taking a long time to recover after physical activity, having problems sleeping, as well as issues with thinking, memory and concentration.

Karen, who allowed her parents to talk on her behalf, is totally bed bound and cannot eat or drink, Mrs Gordon explained.

The couple said: “The ME causes many symptoms including generalised pain, abdominal pain, headaches, nausea and vomiting, fatigue, and hypersensitivity to sensory stimuli including light and noise. She has to keep her eyes covered.

“Karen is intelligent and has many interests. She loves spending time with her two cats and enjoys other things including receiving cards and letters and having things such as some newspaper articles and updates on some of the many animal charities that she supports read to her a bit at a time when she is able.

“Karen has had ME since she was 10-years-old. She has been tube fed for 19 years, mostly at home. In the last two years her ME health has become worse, causing more severe nausea and vomiting and severe abdominal pain leading to more feeding and nutritional difficulties.”

ME is a fluctuating condition and some days Karen is not able to manage any feed at all, along with very little water, because of the increase in the severity of her symptoms, her parents added.

The NHS said other symptoms of ME include muscle or joint pains, a sore throat, flu-like symptoms, feeling dizzy or sick, and fast or irregular heartbeats.

The symptoms of ME are similar to those of other illnesses, so it's important to see a GP to get a correct diagnosis, an NHS spokesperson added.

They explained: “Treatment for ME/CFS aims to relieve the symptoms. Your treatment will depend on how the condition is affecting you. While there is currently no cure for ME/CFS, there are treatments that may help you manage the condition.”