This extract from Piers Morgan’s book ‘Wake Up’ is the inspiration for this blog. It got me thinking about how our online patient community is perceived by those outside our ‘bubble’. It’s something that needs to be considered as it is those very people that we need to engage with our cause. ‘ If there …
Well, that was a day I wasn’t expecting when I woke up this morning! My car, Foggy’s ‘limo’, was booked in for its MOT. I booked the appointment a week ago and have been managing my energy over the past few days to make sure I had to energy and/or was well enough to take …
As Foggy’s Followers are aware, the 2019-20 World Tour was abruptly cut short 6 weeks early! (*Foggy* Sob hic!) due to Covid19. Add to that the fact that his P.A caught Covid19 around the same time that the World Tour stopped, and you can see why we didn’t celebrate the 2019-20 World Tour as much …
This blog is in response to a Twitter exchange I experienced yesterday but also relates to the NICE guidelines review first draft. I had seen a tweet from a Long Covid patient; they had received a letter from their Respiratory Consultant and was ‘confused’ about the content. The Consultant was discharging her from Respiratory due …
Since the start of my advocacy back in 2014, it has been very clear to me that many people in the wider world, outside of our M.E bubble, don’t care about Myalgic Encephalomyelitis because it doesn’t affect them personally. They don’t know anyone with the illness (that they are aware of – nondisclosure, anybody?!) and …
Hi, It’s been a while since I blogged ‘for fun’ and as it’s my birthday tomorrow I’m feeling a bit nostalgic and chatty! I’ve just given myself a birthday treat…..a bath! Pure indulgence that will make some symptoms flare but it was worth it. As I lay in the warm water I pondered how I …
As I am now also a ‘Long Hauler’, my family and I have been keeping our eyes peeled for any M.E appropriate research studies for me to participate in that may help my recovery. My Mum spotted an ad for the study highlighted in this blog post on Facebook and shared the information with me. …
This is a subject that I have been pondering quite a bit over the past few weeks due to being both a M.E patient (14 years, this 23rd November) and ‘Long Hauler’ (since 23rd March). Having both illnesses has given me a wide view of chronic illness patients’ expectations and diagnostic ‘journey’. When I initially …
Hello, I wrote a letter of complaint to the University of Wolverhampton regarding this article in which Prof. Wolman states- Post-viral fatigue is a well recognised condition following a viral infection. There has also been much debate in the medical literature about the existence of Myalgic Encephalomyelitis (ME) and whether this occurs following a viral …
Accumulatively, a few tweets and TV show segments have turned this week, in my life as an M.E/C.F.S and Long Covid patient and M.E/C.F.S advocate, into an emotional rollercoaster ride. This post addresses two of these instances. Every single stigmatising comment anyone has ever made about Myalgic Encephalomyelitis has now been polished off and reused …
