Patient Voices

Many of the M.E./C.F.S. community’s issues are the result of a lack of education about the condition.

Don’t just take our word for it!

A women with her hands together thinking

As a Private Tutor, I have helped many chronically ill pupils, including one with ME. They receive little school support so their parents pay privately for help. Pupils are unable to reach their potential without flexible provision. They should not be ‘settling’ for just passing their exams.

(Louise, UK)

I had to leave my career as a dispenser in community pharmacy after 9 years. Found many pharmacists weren’t aware exactly what ME/CFS was apart from being chronically tired. They didn’t realise the biological and neurological impact it has. Not to mention the company I worked for were notorious for leaving staffing short and hated doing anything occupational health wise. Most receptionists at my GP surgery aren’t aware of what ME/CFS is.

I’m currently studying at a local University. Been given great support from ASDAC, however I did encounter issues with Occupational Health (OH) doubting whether I could do the course. I found it slightly discriminatory to not do the OH BEFORE being offered an unconditional placement. Instead I had to deal with the added pressure and stress of whether OH would let me onto the course.

(Sarah, UK)

A few years ago, not long after I’d been diagnosed and when I was still trying to be a deputy manager for a pub company, one of the big bosses came in with my area manager unannounced for a meeting. He came to be the bar and said “are you Kat?” I said “yes” he said “so you’re not well?”I said “I’ve not long been diagnosed with a chronic illness, it’s all a bit new so I’m not 100% sure what’s going on” he then said “but you’re working, and you look fine” I said “well yes, but that didn’t mean I’m ‘well as you put it'” he then said “but isn’t ‘chronic fatigue’ when you can’t get out of bed? You look fine to me” and walked off….

When I moved to Caerphilly I was more clued up on everything but had left an amazing GP in Oxford, who had seen me every month to make sure I was mentally coping as well as checking on symptoms, I had a few new ones so I made an appointment…I walked in and this new GP said “how can I help” I explained everything and said I had M.E etc and he said “so why are you here” I told him about these new symptoms etc ..and he literally turned round and said “look, I only need to see you if you are actually ill” ..I was so angry I just said “well …thanks” and got up and left, obviously I didn’t see him again.

(Kat, UK)

This is just a small sample of what the M.E./C.F.S. community experiences daily. There are hundreds of thousands of stories just like these across the UK and worldwide.

We can only progress through the education of others.