This World ME Day - Yvonne and Jacqui share what it is like to live with ME

World ME Day falls in May, did you know there’s a real health inequality for specialist ME and Chronic Fatigue Syndrome services across the country?

We have a specialist Myalgic encephalomyelitis/Chronic fatigue syndrome (ME/CFS) service in central Lancashire which is able to diagnose and help people manage and reduce the difficulties associated with ME/CFS.

The main symptom is persistent physical and mental fatigue, which differs from normal tiredness and is not adequately relieved by rest and is usually out of proportion to the activity undertaken. Other symptoms can include:

  • Muscle and/or joint pain
  • Headaches
  • Frequent swollen glands
  • Recurring infections
  • Frequent sore throats
  • Dizziness with temperature fluctuations
  • Difficulties with memory and concentration
  • Sleep issues often with vivid dreams and waking feeling unrefreshed
  • Sensitivity to some foods and medicines.

Meet Jacqui who was diagnosed with ME by our ME/CFS Service a couple of years ago.

ME Jacqui.jpegJacqui said: 

"I was always hugely into mountain biking, I used to ride up in the Lakes and do 30 miles or so. I’d go hiking too around eight miles or so up hills and mountains. Then in 2018 I had an operation on my back, and I was trying to build my strength up after that. I’d walk my dog and while I used to take her up mountains I could only manage a 20 minute dog walk and I’d have to sit down halfway for a while. I was a Physio assistant, but was struggling with exhaustion, I found brain fog and nausea became an issue, my legs felt really heavy and full of lactic acid is how I’d describe it.”

Sadly for Jacqui things just didn’t improve and she’s now no longer able to ride her bike.

Jacqui added:

“It feels like I have full on flu all of the time and suffer a lot with brain fog. I had to quit work and I find focussing for job interviews really hard. I was diagnosed by the specialist team in 2022 and I regularly attend an ME Support group. I find it really helps to chat and connect with others in the same situation.”

We joined Jacqui at our ME Support Group which runs every other Thursday at our Community Roots Service at Deepdale in Preston.

At the group Jacqui met former nurse Yvonne who was medically retired from her role as a Major Trauma Co-ordinator following her own diagnosis.At the group Jacqui met former nurse Yvonne, who was medically retired from her role as a Major Trauma Co-ordinator following her own ME diagnosis.

Yvonne told us:

“ME affects every aspect of my life. Even coming to the support group today is exhausting and I will need a lie down once I get home. I find meditation and a low carb diet helps my symptoms a little. I was diagnosed with ME in 2020 following a bout of flu in the year before which I never recovered from.  Before this I was very active, I had a very busy job and was training for a half marathon and could run up to 10 miles. But afterwards, I was suddenly struggling to move between my bed and the sofa. After eight months I managed to return to work. One particular shift I was called to see a patient with Covid which I later tested positive for.  I’ve never been the same since. My dad and sister also have ME."

It's not known what causes ME/CFS, but there are a number of theories, it may be triggered by an infection, or certain factors could make you more likely to develop the illness. Suggested causes or triggers for ME/CFS include:

  • viral infections, such as glandular fever
  • bacterial infections, such as pneumonia
  • problems with the immune system
  • a hormone imbalance
  • your genes – ME/CFS seems to be more common in some families.

Yvonne added:

“Now I can’t really go for a walk let alone a run, I struggle with the simplest of tasks and then am left so exhausted and need to go to bed. My partner and kids are really supportive and understanding. I struggle with eye pain, joint and muscle pain as well as fatigue and at times must lie down in a dark room as I’m left feeling over sensitive to light and sounds. It’s very isolating so I find the group a godsend, it really helps to share experiences and know we understand each other.”

Find out more about the service and hear Tilly’s story.

Find out how our Central Lancashire Specialist ME/CFS Team support people with ME.