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Hi everyone, I’m new to the forum, although I’ve been lurking for many years, reading some posts (mostly the positive vibes where I can) but after recent research I felt the need to connect. Like many I rest around 18/19 hours a day, my phone being my lifeline, Constantly researching & looking for answers. As you are all probably aware It was m.e awareness week recently & there has been some real success from it & a real awareness on the condition all over the spectrum. I don’t use social media but wanted to reach out to people to share my thoughts & findings, as it’s really helped to give me hope that one day they will find treatment & a cure but at least in the mean time we will hopefully get acknowledgement that it is a physical condition & robbing people of their lives - not phycological like most GP’s believe! We are now starting to be heard at last!! There is a journalist & broadcaster called Gary Burgess who was diagnosed with the condition a year ago & he has started a weekly podcast. He talks to all the right people & asks questions that we ourselves would be asking & wanting answers to, so he is a very good advocate. I keep up to date with research & check on the m.e association web page most days. You can listen to these interviews on their web page - meassociation.org.uk/podcast or on iTunes or type his name & the m.e show into google which should also work. He airs one show a week on a Monday, there are 3 so far & he’s spoken to some very interesting & influential people. The 1st show he spoke to Jennifer Brea, who we all know released a film recently documenting her life & struggles. The 2nd show he spoke to Dr Charles Shephard - an m.e medic who’s had the condition many years himself but currently manages at around 70%, he does some very good work & heavily involved in research & the Biobank. The 3rd show he spoke the Scottish MP Carol Monaghan who managed to get a slot for a debate in Parliament, discussing the discredited pace trial, the revision of the NICE guidelines, fighting for fair treatment & more funding into scientific research. Although she isn’t a sufferer herself she is adamant to raise awareness for us to get the support we need as she has seen & heard how it can devastate lives. Please have a listen when you can.. ( you can easily pause the interviews & keep going back to them) in my opinion it will really give you a glimmer of hope, as I know it has me. The missing millions event was global & helped raise awareness not just with the public but also on a government level. Let’s share & spread the word further. Keep smiling everyone, I feel we’re closer to getting some answers - I feel it in my bones!! The time to act is now!! 🙋???
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