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Thank you for visiting our fundraising page! On November 10th, Team Freddie will be running a mixture of 5ks/10ks/half-marathons to raise funds for the Open Medicine Foundation, a non-profit organisation leading a collaborative, global research effort to find effective treatments and diagnostic markers for complex multisystem diseases, with a focus on ME/CFS.
This cause is very close to our hearts as friends and family of Freddie, an incredible and much loved person who has been living with ME for nearly 2 years. For over 6 months he has been living with immobility, pain, post-exertional malaise, and sensory intolerance to light and sound, as a result of very severe ME. Our hope is that this fundraiser can raise awareness about this debilitating and often misunderstood condition, raise vital funds for biomedical research, and make a difference in the lives of the many individuals and families impacted by this condition.
What is ME?
Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) is a complex condition affecting multiple body systems, with a spectrum of severity. Its mechanisms remain poorly understood, but research suggests the condition is often triggered by a viral or bacterial infection. Individuals can experience a multitude of symptoms, the defining one being post-exertional malaise (PEM), where physical or cognitive exertion can result in a worsening of symptoms, and in some cases a prolonged lowering of functional baseline. In more severe cases, this exertion need only be minimal; having a conversation, sitting up in bed, exposure to light/noise can be enough to worsen symptoms, making this condition incredibly isolating and debilitating. Effective treatments are yet to be identified, minimal teaching on ME is delivered in medical schools, and NHS services currently lack pathways to meet the needs of severe cases.
The Open Medicine Foundation is an amazing organisation which envisions improved healthcare for patients suffering from multisystem, complex diseases with collaboration between patients, clinicians, and researchers.
Any donations to this fundraiser, any time taken to learn about ME and advocate for research funding and improved medical and social support can offer hope and much-needed visibility to sufferers of this condition.
Thank you 💛
Below are some resources where you can learn more about ME:
https://www.cdc.gov/me-cfs/about/index.html
(Distressing content) Interviews of individuals with ME, family members and specialists discussing the lived experience and management of severe ME: