Meet the Volunteers: Paul and CJ
I look forward to our weekly office hour video call as this can be my only interaction with others outside of my family. It’s also the only meeting I’ve done where it’s still ok if you’re in your bed!
I look forward to our weekly office hour video call as this can be my only interaction with others outside of my family. It’s also the only meeting I’ve done where it’s still ok if you’re in your bed!
#MEAction UK will continue to collaborate where we can be more effective together. We believe that each ME charity and patient organisation in the UK plays a vital role in working towards common goals.
#MEAction’s emphasis on campaigning, and philosophy that the biggest changes would come from forcing institutions with power to listen, resonated with me.
#MEAction UK has written to the online publication Psychology Today asking for the retraction of a stigmatising blog post.
#MEAction Scotland submitted their petition to the Scottish Parliament in May 2018. In June, Emma Shorter, #MEAction Scotland’s volunteer leading the petition, made a powerful speech to the Petitions Committee describing the desperate need for support for people with ME in Scotland.
Being able to communicate information effectively and efficiently is key to much of the work #MEAction does. We are looking for new volunteers to join us. If you’d like to help us reach and engage our target audiences, we’d welcome you in our social media teams. Don’t worry if you have no previous experience –
#MEAction UK has written a letter of complaint to Good Morning Britain in response to recent statements from Dr Hilary Jones on the programme, regarding the rehabilitation of long COVID patients. In his interview with Kate Garraway yesterday, Dr Jones recommended graded exercise as a strategy for those recovering from COVID-19. There is now a
#MEAction UK have once again written to the National Institute for Health and Care Excellence (NICE) imploring them to act to safeguard people with ME from harm, after their recent statement cautioning that the recommendation of graded exercise therapy should not be assumed to apply to patients with post-COVID symptoms. Development and publication of the new ME/CFS
#MEAction UK has sent an open letter to Matt Hancock asking him to recognise the harm caused by graded exercise therapy. We are calling on him to ensure all advice for people with ME, and those at risk of developing ME post-COVID, warns of the harm from graded exercise therapy. Join us by asking your MP to write to Matt Hancock too and telling them about your experience of ME.
The National Institute for Health and Care Excellence (NICE) have released a document entitled “interim findings”, stating that the recommendation of graded exercise therapy for mild and moderate ME/CFS should not apply to people with fatigue following COVID-19. They note that the existing guideline was published in 2007, many years before the pandemic, and that they are aware of concerns around graded exercise therapy.