Action for ME

“They help me to stay positive for Finlay”

Sarah Gordon, 49, from London, explains why Action for ME is a lifeline for families who have been affected by CFS/ME

When Sarah Gordon’s son, Finlay, now ten, caught the flu in January 2018, she began to be concerned for his health. “It was the second time he’d caught it in just two months, and he didn’t seem able to shake it off,” she says. After two weeks, she took him to see a doctor and was told it was probably a virus, but after a month he was still feeling poorly. “He had a temperature, acheyness, headaches and extreme lethargy, so I worried
it was more than the flu. I asked the GP to refer him for some blood tests and he was tested for all sorts of things – including glandular fever, Lyme disease and leukaemia – but everything came back clear.”

By February 2018, Sarah began to suspect that Finlay might have chronic fatigue syndrome (CFS), also known as ME – a long-term condition causing symptoms such
as sleep problems, flu-like symptoms and extreme fatigue. “I had ME in my early twenties so I recognised the symptoms. I was very lucky and recovered from it, but I could remember how debilitating it was.”

Sarah and her husband, David, took Finlay to a private paediatrician, who confirmed her suspicions. “There is no definitive test for the condition – it is more a process of elimination – but he was pretty sure from Finlay’s symptoms and negative blood tests that’s what it was. Then in April 2018, we got an NHS appointment with a paediatrician, who also confirmed the diagnosis.

“I was devastated about this because I remembered that feeling of helplessness you have when you are diagnosed with ME – you are given a leaflet and pretty much sent off to get on with it, as there’s no cure, set period for recovery or anything they can really do.”

Sarah then began looking into treatments and alternative therapies to help her son. “As
a parent you just want hope for your child and to do something positive, so we tried everything we could, from taking him to a chiropractor to try to help with his pain, to trying different diets in an attempt to manage the fatigue. While most things didn’t make any significant improvements, the thing that really helped was physiotherapy, which alleviated his joint pain. He also started taking melatonin on prescription – as he found it very difficult to get to sleep – and this really helped.”

Although the family have found ways to manage some of Finlay’s symptoms, he still struggles with constant fatigue and brain fog. “It’s like his energy bank is much lower than other people’s and takes much longer to fill up. He is very pale and gets dark circles under his eyes, and if he does anything remotely active he will pay for it over several days. He manages just two or three afternoons a week at school, for around 45 minutes to one hour, as well as having a home tutor for an hour once or twice a week.

“He was extremely active before this and I know he misses taking part in sports, going to school and spending time with his friends. He gets incredibly bored stuck at home. It feels like his childhood has been stolen from him.”

Since Finlay’s diagnosis, the family has been supported by Action for ME to cope with many of the challenges. “We were having a very difficult time last year as Finlay’s school was pushing for him to increase his attendance. Not everyone understood that if we increased his activity and time at school too quickly it would be detrimental to his health. So we worked with the school to focus on supporting his medical condition rather his attendance.”

At a loss for what to do, Sarah gave the charity’s helpline a call. “I was put in touch with Mary-Jane, the charity’s head of Children’s Services, who was absolutely amazing. She helped me to put together an individual health plan and educational health plan for Finlay and she gave me lots of advice about what the school and council should be doing and what our rights were, which empowered us to make changes. It completely turned our situation around and meant that we were able to start working with the school, rather than against it. “They also directed us to the charity’s website, which gave us lots of useful information about the condition, including helpful ways for Finlay to explain what he had to the children in his school who didn’t always understand.”

Action for ME has also supported Sarah emotionally through some difficult times. “We have been told by the clinical team at University College London Hospital that they are confident he will make a full recovery – which is fantastic – but it’s a challenge to keep strong and positive day-to-day when we’re not seeing any improvements, and the charity has been amazing at supporting us with that. 

“During those dark moments where you think, ‘I just need some sort of glimmer of hope,’ Mary-Jane has been there at the other end of the phone to give me advice or offer some words of support and encouragement, or just to reassure me that what we are going through is perfectly normal. To have that sympathetic and knowledgeable voice at the
end of the line, and to be able to speak to someone who completely understands, has been invaluable when times are tough. They help me to stay positive for Finlay and
have been an absolute lifeline for us all.”