M.E. sufferer hoping to raise awareness

Marilyn, from Luton, explained: “I’ve had to give up work and voluntary fundraising. My husband is now my carer and he has the lion’s share of the jobs around our home, including cooking, assisting me in the shower and taking me to my many medical appointments.”

By sharing her story for M.E. Awareness Month in May, Marilyn hopes to help others understand what it’s really like to live with M.E.

“Sometimes my husband is so tired that he has to take time out,” says Marilyn.

“I know there is a lot of pressure on him and I wish I could do more. I feel so guilty sometimes.”

A key feature of M.E. is the body’s inability to recover after expending even small amounts of energy.

They may feel the impact straightaway but it can typically take anything from several hours to two days to kick in.

Around a quarter of people with M.E. are so severely affected that they remain bed or housebound.

Marilyn added: “I only have so much energy and when it is used up I am not able to do anything else. If I overdo it I am laid up for a few days.”

Even in its mildest form, M.E. can have a significant impact on an individual’s life, and not just on their health.

A lack of understanding and awareness about M.E. means patients can experience disbelief, and even discrimination, from friends, family, health and social care professionals and employers.

“Some people do not really understand M.E. and they think that you are capable of far more than you can actually manage,” says Marilyn.

More research is needed into M.E., to find out what causes it and why it affects people the way it does.

For more information visit www.actionforme.org.uk or call 0117 927 9551.