Elizabeth Moon is raising funds for Invest in ME Research and donating her hair to The Princess Trust – www.justgiving.com/fundraising/Elizabeth-moon
By Elizabeth Moon –
Thanks for taking the time to visit my JustGiving page.
I had Glandular Fever when I was 12 and never recovered. Over the following years it morphed into ME via repeated viral infections, each one acting like a nail in my coffin until I became severely fatigued, plagued by a myriad of symptoms, including body-wide pain with migraines 80% of the time, causing me to be mostly housebound and unable to work or socialise.
ME stands for Myalgic Encephalomyelitis.
Myalgic Encephalomyelitis is a multisystem, complex, acquired illness with symptoms related mainly to the dysfunction of the brain and nervous system, gastro-intestinal, immune, endocrine and cardiac systems. ME has been classified as a neurological disorder in the World Health Organisation’s International Classification of Diseases since 1969 (ICD 10 G93.3).
There is no cure, biomedical treatment or biomedical management for ME on the NHS. This is due to the lack of biomedical research on which NICE can base its guidelines. However, worldwide, research has begun to identify the pathological workings involved in ME, has identified possible biomarkers which would enable a definitive diagnosis, begun to understand mitochondrial dysfunction in the production of energy and begun investigating the use of particular drugs in order to treat the disease.
Invest in ME are raising funds to replicate the Norwegian research into the use of Rituximab to treat ME. They are also setting up a Centre of Excellence for ME ‘which would exist to bring discovery, knowledge, and effective treatments to patients with ME’ and they hold yearly conferences and colloquiums to bring researchers, patient groups, patients and carers together to discuss the latest biomedical research.
Until 2 years ago when I came across this wonderful charity, I had resigned myself to a future where there would be no cure, treatment or understanding of my illness. But this charity, by redirecting research in a biomedical direction, has given me hope for the first time.
I will be sending the hair to the Princess Trust so they can use it to make wigs for children going through chemotherapy. This is why I will be having at least 8″ cut off 😱. I’ve always had long hair, being a hippy at heart, but this is the one thing I’m still able to do to raise money for this great charity. And it will be great knowing that somewhere out there, somebody has hair and feels better about themselves while going through a tough time.
Thank you for your support 💜
Share Elizabeth’s story or donate at www.justgiving.com/fundraising/Elizabeth-moon