In my talk Living With Pain on 7th February, I referred to several studies and other resources. Here are links to these and some additional ones on living with pain and hidden chronic illness, and improving our care. Read More »
Tag: stigma
Standing up for our rights
Standing up for our rights can be difficult when we’re ill, so here are some resources on getting our healthcare, social care, benefits, housing, and employment needs met. Always remember that M.E. is classed as a disability by the Equality Act 2010 and we have rights.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.
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
On 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 »
Latest plain English M.E. research round-up
This M.E. research round-up covers the following studies: Faulty pain receptors, What can cerebrospinal fluid tell us? Reporting on M.E./CFS in the media. Read the research round-up
#WorldMentalHealthDay: Trauma and chronic illness
For #WorldMentalHealthDay this year I’ve written about PTSD in general, and then more specifically about trauma due to experiences as patients with chronic illness.Read More »
Article in UK’s Pharmaceutical Journal: Fresh evidence points to a cause and possible treatments for CFS/ME
The Royal Pharmaceutical Society’s professional publication, Pharmaceutical Journal, has run a feature on the rituximab trials and how these could be revealing the underlying mechanisms of the illness.
My exciting trip to London for the launch of Action for M.E.’s new strategy
Yesterday I attended the most exciting event in my 2016 calendar – the launch of Action for M.E.’s new five-year strategy at Speakers House at the Houses of Parliament in London.
Discover how pharmacy can help tackle health inequalities for people with M.E.
I’m currently writing a resource with Action for M.E. for pharmacy teams, but as it’s M.E. awareness week and International Awareness Day today, here’s a post aimed at pharmacy teams with an introduction to M.E./CFS, a quick list of what community pharmacies can do to help their patients with M.E., and some resources for health professionals, such as the pharmaceutical management guidelines, at the end.
10 myths about M.E….busted!
You might think you know about M.E. already but there are a lot of myths about the illness portrayed in the media. May is M.E. awareness month, so I thought I’d try to dispel some of these myths with the facts about the illness.
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A Prescription for M.E. 