Claire Ayshford Smy

Claire's Quiz Night

Fundraising for ME Association
raised of £5,000 target
by 192 supporters
ME Association

Verified by JustGiving

RCN 801279
We help people with ME/CFS to understand and survive their illness


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CFS/ME is a swelling of the brain and spinal cord.  It is a serious neurological condition for which there is no treatment, no cure and no professional support.  Very little is known about what causes the condition which leaves sufferers with intense pain, confusion, slurred speech, muscle weakness, dizziness, nausea,  hypersensitivity and extreme fatigue.  

There are around a quarter of a million known sufferers of CFS/ME in the UK alone.  These include children and adults of all ages, social classes, ethnicities and genders.  Of these, 25% of sufferers (around 65 thousand people in the UK) are bedbound, permanently.  Some sufferers have been bedbound for decades, many being tube-fed.  There are no specialists to help.  There is no treatment other than something called 'pacing' where sufferers are advised to find a baseline for what activity they can manage and to stick very closely to that, always. 

It is believed that CFS/ME is often triggered by a viral infection.  The virus remains in the body and the patient never fully recovers.  

Covid-19 is a virus.  Since Covid-19, there have been many people diagnosed with Long Covid and the ME Association works on Long Covid too - there is huge overlap between the conditions and NICE guidelines make similar recommendations for both diagnoses. It is absolutely vital that we find out more about how these conditions work and what can be done to treat them.  It is a drain on resources, it is damaging to individuals and their families and it is utterly isolating and totally misunderstood.  We are not lazy, we are not simply tired and need a good holiday, we are not people who need to get on with it and stop feeling sorry for ourselves.  We are ill.  Very ill.  We are disabled.  We are lonely.  We are frustrated.  We are ignored.

I set up our weekly quiz right at the beginning of lockdown in March 2020, because I felt instinctively that people needed a sense of normality, something to look forward to, somewhere to 'see' other people and to have a bit of fun and silliness in this difficult, lonely, time.  I ran the quiz for 70 weeks, back to back, until July 2021. I know how it feels to have the rug pulled from under you, to have normal life taken away with no control over when or if things will ever get back to normal, and to feel lonely and alone.  The quiz helped me to feel connected to people in a way that I hadn't been for over three years due to my illness and I absolutely loved it!  So much so, that even though weekly quizzes have now come to an end, I am still hosting a quiz every couple of months, and people are still turning up!  

Now that things have pretty well gone back to 'normal' and most of us are able to go about our lives as before,  I imagine that some of us will have learnt a lot about ourselves and what's important to us, and we may see the world in a different way.  I certainly see things very differently since I have been unwell.  People with CFS/ME and Long Covid will still be ill.  Despite many people's lives having returned to normality, ME sufferers and their families will still be dealing with the day to day struggles of their condition.  Please let's not forget them.

I have been absolutely ASTONISHED at how generous people have been and how much we have been able to raise for the ME Association so far.  I know the charity is incredibly grateful and that the money is being put to very good use.  If you enjoy the quiz and are able, it would be absolutely fabulous if you could help me to use this situation as a way of raising awareness and funds for an association that has helped me to understand my condition and helped me to find a way through. 

About the charity

ME Association

Verified by JustGiving

RCN 801279
The ME Association campaigns hard to get ME recognised as a severe neurological illness. Our helpline provides essential information and support to adults and children who have ME/CFS, and to their families and carers. We also fund biomedical research into the physical nature and causes of ME/CFS.

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