'I had to lie in the dark for months due to ME'

Ami Hallgarth said she hoped the government's measures would reduce stigma around ME

A woman living with a disease that causes extreme fatigue has thanked the government for increasing support for those with the condition.

Last month, the Department of Health and Social Care announced a care plan for people with myalgic encephalomyelitis (ME) that included investing in research and offering new training for NHS healthcare professionals.

Ami Hallgarth, from Sowerby Bridge, welcomed the plan as she felt support had been "severely lacking" in the 14 years since her diagnosis.

Ms Hallgarth said at its worst her condition left her bed-bound for months and facing up 50 seizures a day, so the new plan was "wonderful".

But she cautioned: "Time will tell because you can say all these things and I think we are so used to hearing empty promises."

Ms Hallgarth said she felt like she was not listened to when she first went to the doctor with her symptoms and, after a "process of elimination" following a variety of tests, she was diagnosed with ME.

Speaking of the daily limitations of the illness, she said: "It impacts on a physical level in terms of mobility, moving around the house, leaving the house...

"I use an electric wheelchair or a cane if I am going outside the house.

"When I was at my worst I was not able to sit up."

Ms Hallgarth said the condition left her having up to 50 seizures a day at one point

At that point, Ms Hallgarth said she had to "lie horizontally in the dark for months", unable to tend to her personal care, with her partner and son supporting her.

"ME can affect you on a very severe level with people on feeding tubes or in hospital, completely reliant on care givers," she said.

When her condition is more manageable, Ms Hallgarth runs her own jewellery business, AH Jewellery, according to the Local Democracy Reporting Service.

Also referred to as chronic fatigue syndrome (CFS), ME is a complex long-term physical disease which affects many parts of the body, according to ME Research UK.

The condition affects approximately 390,000 people in the UK, causing debilitating fatigue, sleep problems and difficulties with thinking, concentration and memory.

The government's plan also includes new training for health staff and medical students, featuring up-to-date learning resources to increase understanding and ensure signs are not missed.

The government said this would help combat the stigma faced by people living with ME/CFS, which stemmed from a lack of awareness about the condition.

Ms Hallgarth said she welcomed many aspects of the plan including improved education for NHS workers and students, and better care proposed for children diagnosed with ME.

She said she hoped the move would reduce stigma around ME, but warned: "It is going to take a while for those old attitudes to really shift."

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