Lewes chronic fatigue woman 'forgotten' by health service

Christine Halsey has suffered with Myalgic Encephalomyelitis (ME) for 25 years, but is now unable to leave her bed as the condition gets worse.

The 77-year-old from Whitesmith, near Lewes, is supported entirely by her husband and said she has been “forgotten about” by the health service.

“It has been difficult. It cuts you off from family and friends. It is very lonely,” she said.

“Luckily my husband Geoff is my carer. I don’t know how people can manage without the support because there is nothing out there.”

ME is a long-term condition that usually causes extreme tiredness, but can also bring on spells of dizziness, heart palpitations, feelings of sickness, and in Christine’s case “migraines that can last for days”.

Christine has lived with ME for 25 years

The Argus previously reported on a lack of provisions for people with severe ME, as only those with mild or moderate symptoms are able to access support at Haywards Heath Health Centre.

For those who cannot leave their home there is nothing, while many people still deny the condition exists at all.

“A so-called ‘ME expert’ in Oxford once told me to get out of my wheelchair and go on a world trip or holiday to Australia for six months, and this was a professional psychiatrist,” said Christine.

“How he thought I could do that – or even have the money to do that – is ridiculous.”

Geoff, also 77, and Christine admit they used to get angry when people denied the existence of ME, but now the feeling has developed into frustration.

Christine said: “Some people don’t believe it is an illness.

“It’s a hidden illness, I don’t always look ill. There’s no physical elements.

“There needs to be more research. If there was some way of getting some care in the home or even just being able to talk to somebody – it needs recognising that people need help at home.”

The couple’s house had been transformed to accommodate Christine’s needs. The latest update was to remove the bath in favour of a wet room.

Geoff Halsey

“We had to take it out because Christine had trouble getting in and out. She misses the bath,” said Geoff.

Other aspects of her Christine’s life have also disappeared.

She loves reading but is no longer able to look at text or screens for prolonged periods – describing the sensation as “like travel sickness”.

But while many might become furious that their pleasures have been taken away, Christine said this is “just how life is”.

“I have found it easier just accepting that this is how it is now,” she said.

Christine has been a practising Buddhist for 30 years and says meditation helps her process any issues or negative feelings that come with ME.

Having a supportive husband comes in handy, too, she said.

“But he doesn’t like doing the cooking”.