Support for carers and families

A carer can be a partner, relative or friend of any age, who looks after someone unable to look after themselves on an unpaid basis.Read More »

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My case study: How Pharmacist Support changes lives

I’ve written a case study on the difference the charity Pharmacist Support has made to me, to show how donations can transform the lives of pharmacists with disabilities. When I see other people in my situation, I feel very fortunate to belong to a profession that looks after peers who fall on hard times, especially when I see the love for the charity on social media and pharmacists’ fundraising challenges.

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Sign the petition to review the NICE guideline for CFS/M.E.

NICE petition

Although there might not be a new treatment to add to the NICE guideline for CFS/M.E., there’s more to healthcare than cures. NICE has decided that the guideline won’t be reviewed, even though it is 10 years old. This decision has gone out to consultation for the next 2 weeks. Just as NICE decide not to review their recommendations, the Centre for Disease Control and Prevention in the US removes CBT & GET as its recommended treatments for M.E./CFS.Read More »

Reblogged: Enforced rest vs chill out time

Great quick blog explaining to healthy folks how our rest isn’t by choice and it’s not even a “duvet day”, it’s because we’re too ill to do anything, and trying to will result in even worse symptoms. Having a chronic illness isn’t a chilled out lifestyle choice, it’s debilitating.

My heart is set on living ...

I’ll make this quick for reasons that will become apparent. I wrote yesterday about putting myself into ‘Standby’ mode.I realised that I could’ve done a better job of explaining that after people told me to enjoy my rest and relaxing time, and that I’ve earned it.

I’m not managing to do a great deal this weekend and I’m mostly lying about in bed. If you have a busy life working or parenting or whatever, then that might sound ike an attractive proposition. However, I’m not happily ‘chilling out’. I’m stuck in bed because my body isn’t capable of doing much else at the moment. It’s frustrating, dull and impractical. Alas, it’s not fun.

My symptoms are numerous and can vary wildly at any given time. This weekend’s particular version of ‘standby’ mode essentially involves feeling really ‘shite’, due to nausea, pain, palpitations and breathlessness, and with fatigue, some unsteadiness and…

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UK premiere of the award-winning M.E. documentary Unrest

UnrestOn Friday I watched the award-winning documentary Unrest at Sheffield Doc Fest.

The film includes clips from the video journal of director and US M.E. advocate Jennifer Brea since she became ill with M.E. in 2013, along with interviews with some of the other 17 million people worldwide with the illness, exploring their experiences with healthcare and the impact M.E. has had on their lives.Read More »