Monday, 11 August 2014

How to have an M.E. gathering

I love meeting up with my M.E. friends and have been to gatherings large and small.  Here is a list of things to consider when planning a spoonfest!

·        Take regular breaks, plan when to stop and rest at the begging and stick to it!

·        If not everyone wants to rest each time, that is ok but make sure you work around everyone's base line.

·        Think about numbers
-Too many may be too tiring and loud.  
-If you want to have a large gathering over-invite, expect people to drop out last minute.
-Three people works really well, one person can be resting while the other two chat.

·        If you are under age, or will be meeting people who are under age, think about safety make sure that there is a trusted adult near buy.

·        If you are meeting someone you have not met before, bring a friend and meet in a public place.

·        Think about length of time, if people are travelling long distances it is not worth meeting for only a short time, but a meeting that is too long will cause unplanned payback.

·        Think about dietary requirements, people may have intolerances.

·        Think about accessibility 
-Allow for walking sticks and wheelchairs.
-Provide a separate room for resting
-Make sure the entrances to buildings are accessible and that there is a downstairs toilets. 
-How will people get there? Is there a train station near buy, parking?

Me and Sarah, my spoonie friend


  1. I'd love to live closer to other spoonie friends I've met online! When we're all cured we can have a massive party and we won't even need to take into consideration anything on your list! That will be the day huh!


    1. Wouldn't that be amazing! I am lucky to live close enough to a few spoonie friends that I can get to by train. One day...


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