On Sunday 17th January in Watford, just outside London in the UK, a group of climbers teamed up to raise money for ME research. The goal for the team was to climb the height of Everest, 8,848m, in a single day. Even for accomplished, experienced climbers this is a tough goal to reach.
ME Research UK fund research into ME (Myalgic Encephalomyelitis) which is a systemic neuroimmune condition characterized by post-exertional malaise (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound. For moderate to severe patients, living with ME is like living with late-stage cancer, advanced stage AIDS, or congestive heart failure for decades. The British National Health Service (NHS) only offers cognitive behavioural therapy (CBT) and graded exercise therapy (GET) to the 240,000 ME patients in the UK. Many patients consider these at best to be of little help, and at worst harmful and dangerous. The UK government’s funding for ME research remains minuscule relative to the disability levels of the disease.
The fundraising event was organised by Ed Cornes whose brother Ollie has been disabled by ME since an infection in 1999. Ed himself is sick with a different debilitating disease, ulcerative colitis (an Inflammatory Bowel Disease, IBD, similar to Crohns disease). Ed brought together the team of climbers (some of whom travelled across the UK to join the team), arranged corporate sponsors to provide prizes for the climbers who competed against each other, and also arranged matched funding from corporate employers of some of the climbers. The climbs were tracked using high-tech tracking equipment, with a button for climbers to press at the top of the wall, and progress displayed on a projected screen and online.
Everyone involved had a very enjoyable day, with many friends and family coming along to provide support, the climbers reached the target climb at an impressive speed, and the event raised significantly more money than expected with over £3,500 ($5,000) donated, including the employer matched donations. Given the disappointing levels of government funding, money from fundraising events like this is crucial.
The fundraising page is open for a short while longer and donations of any size are welcome to show thanks to the climbers and to fund research. Note that all money raised goes to ME Research UK, who only fund biomedical research.
Thank you to our British climber allies for this very positive and successful event! You can watch the amazing time-lapse video of the whole climb, filmed using GoPro cameras.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the