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*Name has been changed
Lulu developed ME after a bad case of flu in 2009. “There followed 15 years of thinking that it was all my fault. That if I just tried harder – did more research, tried more cures and treatments, paced more effectively, made different choices – I could be well again.”
Through a chance conversation with the occupational health department at her work, Lulu understood she could ask her GP for a referral to her local ME service. When she discussed this with her GP she was told “That’s really not a diagnosis you want Lulu. They won’t be able to tell you anything that you can’t read online.”
A referral was made and Lulu met with a specialist occupational therapist, and received a diagnosis letter that said ‘probably has mild to moderate ME.’
“Mild to moderate – that doesn’t sound too serious, so why do I feel so incapacitated? Many of my symptoms were not listed on the questionnaires but are now accepted as very standard.”
“It sowed the seeds of doubt in my mind, I must be exaggerating how I feel.”
Over the next 10 years, Lulu tried many different therapies, treatments, special diets/supplements and antidepressants. She changed job, had reasonable adjustments made and repeated reductions in her hours.
She asked her GP for another referral to the local ME service, hoping that after 10 years, research would have created more advances in the treatment and management of ME. Sadly, ME remains a neglected condition, and there is still no test, no effective treatments, and no cure.
Lulu had also tried many times to access support for her wellbeing, including having CBT sessions followed by a course of Acceptance and Commitment Therapy (ACT).
“I was totally exhausted with repeatedly explaining my condition. Describing my symptoms and feeling that I wasn’t quite being believed, or being made to feel unworthy of the GP’s time.”
Lulu found out about the Action for ME counselling service in February 2024. “I had my initial consultation, it was wonderful. As I told my story I felt really understood for the first time in 15 years. Although I had come across some really nice professionals over the duration of my illness, there were two things missing – assured continuity and complete understanding. My Action for ME counsellor offered me both of these.”
Lulu has continued to have regular sessions with her counsellor. “I never have to waste energy trying to help someone else understand my condition. Jenny has helped me make sense of my new life.”
Money raised during last year’s Big Give helped us provide 121 bursaries for healthcare to people like Lulu, enabling them to access ME-informed health and wellbeing support.
“Please support Action for ME to continue to offer these vital services. I initially had a bursary to help cover the cost of my sessions which helped me enormously. The quality and availability of NHS services varies so much. Please help to make support for us a certainty and not a lottery.”
