From the Faversham News | 7 July 2016 | story by Bess Browning | bbrowning@thekmgroup, co.uk | @bessbrowningKM
A teenager who is home-schooled because of a crippling illness is holding a fundraiser to increase awareness of her condition.
Phebe Love, 14, suffers from myalgic encephalopathy, more commonly known as ME or Chronic Fatigue Syndrome, which affects around 250,000 people in Britain.
After many years of ME being dismissed as laziness, or nothing at all, the World Health Organisation and Department of Health now accept it is real… but as yet there is little research into it and no treatment or cure.
For Phebe, who used to go to the Abbey School before becoming housebound in North Preston because of the crushing symptoms of her illness, it took two years to get a formal diagnosis.
She told the Faversham News: “Imagine running a marathon and how you feel afterwards, not having a rest, your feet aching, your muscles aching so much that they are screaming at you, you are so tired that you fell you could sleep for at least a week.
“Then imagine sleeping for 10 hours, but waking up and feeling so drained and tired that you can’t even get out of bed or ache all over because you have only slept on and off for a few hours.
“That’s my daily battle.
“My knees and shoulders feel like they have severe muscle damage and walking can be a struggle.”
Phebe, who lives with mum and dad Toni and Shane and siblings Tom and Sharise, wants to raise awareness about her condition and hopes to collect some cash for the ME Association charity during her quiz night on Friday, July 29, at the Brents Tavern in Upper Brents.
The ME Association was founded in 1976 and funds and supports research and provides information and support.
People of any age can be affected and severe fatigue, painful joints, disordered sleep, gastric disturbances, poor memory and concentration are common symptoms.
In some, the effects may be minimal but in a large number of patients, employment or schooling can become impossible and social life may become restricted.
Phebe, who also has diabetes, adds: “Nobody knows what causes it and there is no cure and no treatment, Until recently, it wasn’t recognized as an illness, in fact it was seen as a cop-out for people being tired and an excuse for the odd day off work.
“Some people, including my father’s boss, ended up being in a wheelchair because of ME.
“It does go into remission, but it lays dormant like a hibernating mouse ready to spring back into action again at a moment’s notice.
“I’ve had to leave school because of it and I’ve lost contact with my friends.”
Phebe’s mum Toni added: “There have been times when Phebe has screamed and shouted at me because she can’t physically get out of bed.
“My husband Shane and I thought that something may have been wrong at school but we looked at all the symptoms and, when someone mentioned ME, we began looking into that.
“Over the past two years it has been a relentless struggle as I knew there was something not quite right and we were not getting answers.
“The GP and paediatric consultant were awesome. They helped in every way they could and took time to listen to us and, after loads of blood tests, we finally got a diagnosis.”
The quiz begins at 7.30pm, tickets are £5 each and there are eight people to a table.
There will be a ploughman’s dinner and a raffle.
To buy a ticket, call Toni on 07874 869 592.