Hi, I’m Helen. Thanks for taking the time to visit my JustGiving page. On May 14th (during M.E. Awareness Month) I’m going to be shaving my head to raise money for the M.E. Association’s Ramsay Research Fund, and will also be donating the hair to The Little Princess Trust. 

I’ve had M.E., or myalgic encephalomyelitis, for over 2.5 years now, since I was 17 years old. It’s an extremely debilitating neurological disease affecting over 250,000 people in the U.K., and approximately 65 million people around the world. It causes debilitating exhaustion and pain, and other symptoms associated with post exertional malaise (the body’s inability to recover after expending even small amounts of energy). There is currently no cure or effective treatment for M.E., and it is a chronic illness, meaning people can have it for their whole life. It is also not sufficiently understood by doctors, and is appallingly underfunded compared to other diseases. 

Personally, I’m mildly to moderately affected, am currently too ill to work or go to university, and am in pain and extremely exhausted every single day, along with having many other symptoms. However, the most severely affected by M.E. often have to rely on feeding and oxygen tubes to survive. 

I’m cutting my hair for 3 reasons:

1. To raise money for the Ramsay Research Fund which is funding 6 vitally important research projects into M.E.
2. In solidarity with the many people with moderate to severe M.E. who are unable to manage having the long hair they’d like because they’re either too ill to keep it maintained or too sensitive to it, one of the symptoms being a severe sensitivity to touch. 
3. I’ve had so much joy from my hair throughout my life, and if I can give even a small amount of that joy to someone who is going through a similarly awful illness by providing them with a wig of my hair, it would make me happier than I can express.

If you feel able to, please donate, and/or share this page with people you know. Even a small donation will make so much difference and provide a glimmer of hope to the millions of people suffering from this devastating disease, including me. I do completely understand, however, that people's financial situations may not be 100% secure at the minute, so please only donate if you feel able to.

I’ve provided more information on the M.E. Association, the Ramsey Research Fund, and the Little Princess Trust below.

About the M.E. Association:

They’ve helped me a lot over the last 2 years, providing vital, up to date information from experts on everything from diet to applying for benefits. They also offer a phone call support service for people feeling isolated because of their illness, along with many other things. Their Ramsay Research Fund, which I’m fundraising for, is currently providing funding for 6 important research projects: 

1. A national patient survey that will determine the factors affecting diagnosis and highlight any issues that may relate to delays in the diagnostic process. We hope that the analysed data when published will lead to improvements in the current process that will benefit future generations.
2. Recently preliminary investigations at 3 independent laboratories highlighted that there may be an anomaly present in the blood plasma of people with ME/CFS that is adversely affecting mitochondrial performance in healthy cells. This project will attempt to determine if this anomaly can be isolated and identified.
3. A critical examination of the theoretical basis that underlies the use of cognitive behaviour therapy (CBT) and graded exercise therapy (GET) in ME/CFS.
4. A 12 month study analysing nearly 300 blood samples from the UK ME/CFS Biobank to look for small molecular clues known as metabolites. These are left behind after chemical reactions have taken place at a cellular level. It is hoped that this research will identify patterns of metabolites that could help to form either a diagnostic test for ME/CFS or help to sub-group people that come under the ME/CFS umbrella.
5. A project aiming to build up a detailed picture of changes in what are called micro RNA profiles – along similar lines to what they have already discovered in people with fibromyalgia. They are examining blood samples from the cohort of people with severe M.E. that are stored at the M.E. Biobank in London.
6. A study to further examine both immune system dysfunction in ME/CFS and defects in the way that energy is being produced at a cellular level. This new research will investigate how abnormalities in this part of the immune system are linked with evidence that is now emerging of a disturbance in the way that energy is being produced at a cellular level in ME/CFS.

About the Little Princess Trust:

The Little Princess Trust provides free real hair wigs to children and young people, up to 24 years, who have lost their own hair through cancer treatment or other conditions.