Weʼre raising £200 to help fund travel for ME/CFS Biological Research Appointments
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My name is Cate. I've had ME/CFS for almost 5 years. ME/CFS is a debilitating illness. It causes me extreme fatigue, problems with cognitive function, muscle and joint pains, and many other varying symptoms. The cause of ME/CFS is unknown. There are currently no reliable treatments and no cure.
I've recently been accepted as a participant in the ME/CFS biobank research with CureME. I'm extremely pleased to have been accepted, and I'm hoping it will help to improve ME/CFS treatment and cures for the 250,000 people who suffer with ME/CFS in the UK, and more across the world.
In order to take part, I need to travel to London from my home in Bristol, 3 times in the next couple of years. CureME have asked to see me for my first appointment in September, but are only able to reimburse up to £20 for travel costs (per appointment).
With travel from Bristol to London, plus getting around in London to my appointment, costs will be far more than £20. I will also need my partner to come with me as I won't be able to manage a long trip like this alone, as my cognitive difficulties may mean I find it difficult to navigate around an unfamiliar and busy area like London, I will need someone to push me in a wheelchair, and the fatigue from the travel and appointment may cause a crash. Travel to London for two people is again, going to cost a lot more than £20.
I'm also worried about choosing one of the cheap coach options. The coaches take much longer (around 2.5-3 hours each way, more if they get stuck in traffic) and I'm aware that sitting in uncomfortable coach seats for that long could cause a lot of pain and flare-ups of my symptoms for weeks to come. Especially if there's limited access to toilet facilities for 6 hours (there and back).
Therefore, I will need to travel by train, from Bristol to London. Appointment times mean I may not be able to get an off-peak ticket and with only a couple of weeks to go, I'm also limited with the options available. From London Paddington Station, I will need to use tubes or buses to get across the city to my appointment. Depending on health and location, I may also need to get a taxi.
Due to my health, we're already struggling financially as I'm unable to work. I'm also unable to access any government funding such as PIP or ESA as I'm not considered "disabled enough". I'm very worried about the financial impact that up to £200 travel costs for a single journey to London could have on my family, especially as my partner will need to take time off work too.
If you could help me to attend this appointment by helping me cover the travel costs I would be incredibly grateful.
If I raise more than needed for this first appointment, I'll use the spare for future appointments.
More info about the CureME Biobank study I'm participating in here: http://cureme.lshtm.ac.uk
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Aug 7, 2018
Good luck for us all- we need people to donate and to be involved in actions to help our CFS/ME cause - a long struggle and slog for all of us is ahead no doubt.
Aug 2, 2018
My daughter has ME and I'm very happy to support you to do this!
Jul 19, 2018
Good luck with the research Cate.
Jul 19, 2018
All the best for your appointment in London to help research
Jul 19, 2018
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