Please take one hour out of your busy schedule just to lie down. You can read, listen to music or just rest. Then imagine having to do that for 22 hours a day because you don’t have the energy to do any of the myriad of things you would like to be doing.

It has been heartbreaking to see the impact of M.E. on my daughter Alisa’s life. Alisa is an extremely bright, independent person with a high work ethic and social conscience. She is an extremely good communicator, particularly in the fields of science and nature. Until three years ago she was an energetic, lively, sociable person who worked hard and was very committed to her work, to nature and to the environment. Not only is she now unable to work either in the office or remotely, but she cannot care for herself and relies on her husband James to carry out basic activities like cooking, laundry and cleaning – all of which she used to do without any difficulty. She now struggles with basic selfcare, such as washing her hair even once a week.

ME or ME/CFS is a complex physical disease which affects many parts of the body and therefore causes a variety of symptoms, including intense fatigue and a feeling of being unwell which can be worse after physical or mental effort. Living with ME is unpredictable and exhausting. The symptoms (post-exertional malaise, brain fog, fatigue, pain, hypersensitivity, the list goes on) impact every aspect of life. ME affects all social groups and all ages, including children. Women are more likely to be affected than men. Periodic short intervals of energy complicate diagnosis and form-filling when trying to get support (computer says no).

ME Research UK-funded research suggests that more than 400,000 people in the UK have ME - probably more due to misdiagnosis and delays in diagnosis. This is more than double the number of people living with either Parkinson’s or Multiple Sclerosis. According to research, people with ME are more limited in their ability to perform daily activities than those with other illnesses (such as MS or Parkinson’s). WHY is there so little funding for research into the causes of, and potential treatments for, the disease?

ME Research UK is the largest organisation carrying out research into the disease and has spent just £4.5 million on more than seventy research projects around the world. This is less than 1% of the spend per sufferer for other major illnesses:

UK research spending:

ME/CFS £4.5million

Parkinson’s £250 million

MS £150 million

UK Research spend per sufferer:

ME/CFS £11

Parkinson’s £1,506

MS £1,733

“...doctors do not treat us and science does not study us. How could a disease this common and this devastating have been forgotten by medicine?" Jennifer Brea (filmmaker, activist and ME patient)

Only biomedical research can find the causes of ME/CFS, improve diagnosis and treatment, and, ultimately, arrive at a cure. That’s why focus has to be on research. But research is expensive and becoming more so every day. That’s the challenge researchers face, and that’s why they need your help.

Please give generously to this life-changing research.

Thank you

Fiona