Our Summer Appeal has now closed. Thank you so much to everyone who supported us in creating change for people with ME!
"I lived with ME symptoms for over 40 years before receiving a diagnosis"
Beena had glandular fever when she was 14 and was off school entirely for 3 months, before making a phased return over the following 3 months.
"During this time I remember experiencing fatigue like I had never experienced before."
Since then, her energy levels have never returned to those she previously had. Every time she visited a GP, she would tell them "I have a continuous feeling of a hangover and I am constantly exhausted this is not a normal feeling of tiredness but I can’t explain it" but other than being sent for an occasional blood test, generally her symptoms of fatigue were ignored.
After leaving school, she worked full time mostly in the supported housing sector, including in a women’s refuge, but always felt that her energy levels were not quite right.
“Throughout my working life I was never able to do much except for working full time as evenings and weekends I was spending my time recovering from being exhausted.”
In December 2022, Beena experienced a bad cold and asthma episode, and upon returning to work felt more exhausted than ever before. She visited her GP, and for the first time in over 40 years of symptoms, chronic fatigue was mentioned. A referral was made to a rheumatologist, but there was a long time to wait for the appointment.
“I decided to see a private consultant who diagnosed me with chronic fatigue in June 2023.”
Beena was finally able to see the rheumatologist in November 2023, but when she said she had chronic fatigue, the rheumatologist didn’t understand and asked what it was.
Sadly, this lack of understanding from healthcare professionals is something that we hear frequently from people who use our services. That's why, through our Medical Student Essay competition, we're ensuring that the next generation of Doctors have a better understanding of ME.
At the advice of the private consultant who diagnosed her, Beena’s GP requested a referral to a CFS specialist service to receive support with a treatment plan.
“There was no specialist service in my area so I was referred to a service based in South London.”
After being assessed and accepted for treatment in April 2024, Beena is still waiting for her local NHS Panel to agree funding for her to use this service.
“The process has been completely draining, frustrating and demoralising.”
During this time, Beena has been accessing support from the Action for ME Information & Support team.
“It was such a relief when I contacted the charity to speak to someone who you knew understood where you were coming from, without having to go through and explain how ME impacts every part of your life as this is the exception not the norm.”
People with ME need change, and they need it now. No one should have to wait 40 years for a diagnosis.
“Please consider any donations to Action for ME as their work and support is incredibly vital to people like me who have very little or no alternatives to turn to when advice and support is needed.”
