A Yorkshire mum who has been living with ME for well over a decade has told her story as the government plans to increase support for those living with the condition.
Also referred to as Chronic Fatigue Syndrome, 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.
A quarter of those diagnosed, are believed to have severe ME which leaves them housebound or unable to work.
Ami Hallgarth from Sowerby Bridge has spent over 14 years battling Myalgic Encephalomyelitis (ME). At her worst, the condition has seen Ami bed-bound for months and having up to 50 seizures a day. When things are more manageable, Ami runs her own jewellery business – AH Jewellery.
In her experience, Ami says that on the whole, support has been “severely lacking”, feeling totally fobbed off and not believed by her GP when she embarked on getting a diagnosis. By “process of elimination” following a variety of tests, Ami was diagnosed with ME.
She spoke of the daily limitations of the illness and 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.”
At that point in time, Ami 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. She explained: “ME can affect you on a very severe level with people on feeding tubes or in hospital, completely reliant on care givers.”
In Ami’s case, she said her condition has shifted from being severe to mild, then to very severe, having a relapse around two and a half years ago which she suspects was triggered by Covid. She describes the illness as “very unpredictable”.
For those with ME, more support is soon expected to be within reach, with the government recently announcing a care plan to better support people living with the condition. It has pledged to provide improved support that is closer to home and to invest in research.
The plan also includes new training for NHS healthcare professionals, featuring up-to-date learning resources to increase understanding and ensure signs are not missed. The government says this will help combat the stigma faced by people living with ME/CFS, which stems from a lack of awareness about the condition.
Ami said it was “wonderful” to hear about the government’s plan and feels it is a step in the right direction, but believes the proof will be in the pudding. She added: “Time will tell because you can say all these things and I think we are so used to hearing empty promises…”
Ami welcomed many aspects of the plan including improved education for NHS workers and schools, and better care proposed for children diagnosed with ME. In terms of the stigma surrounding the condition, she hoped the government’s move will help to overcome it and said: “It is going to take a while for those old attitudes to really shift.”
Ami also spoke of the “real support” for ME sufferers provided by the Kirklees and Calderdale ME support group. The group is run by a small group of volunteers, most of whom have been diagnosed with ME/CFS and have a wealth of experience of dealing with the illness. She added: “Without the volunteer network there was nothing for people to turn to.”
More information about the local support group can be found here: https://kcimesg.co.uk/
