*Foggy* Hi! This year, Team Foggy will be taking part in our 7th M.E Awareness Week since we became AWESOME! (ME Foggy Dog was launched in July 2014).
This year, my P.A will be hosting a virtual ‘International M.E Awareness Day’ event. It’ the first time she’s ever hosted an event on Zoom so it should be INTERESTING! I’ll let her tell you more about it in this blog. I’ll be in Foggy HQ with her during the event but…..she’ll be doing all of the work! (As usual Foggy….as usual!)
To all of my wonderful M.Eep Followers, lots of love and Foggy snogs are coming your way xxx
As Foggy has just told you, I’m hosting a May 12 event this year from the comfort of Foggy HQ. Anyone that’s thinking it will be difficult and will have a big impact on my M.E, you are probably right. But, I have made it as M.E-friendly as possible and have pre-recorded a few things so I can ‘rest’ briefly during the event. But it will be a physical challenge for me personally, that makes it very fundraiser-worthy!
Is it just me? The past year has been particularly bad for fake news and misinformation about our disease and I want to do something to re-balance the situation. That’s the force that’s driving me to hold this event. I am sick and tired….and sick and tired of hearing nonsense being spouted about our disease. I’m inviting as many non-M.E peeps as I can, I think I must have asked every single human being that I know in real life, that hasn’t got the illness, to attend the fundraising awareness event! I am now asking you all to spread the word about this event to your family, friends, and work colleagues (if applicable). I have space for 300 ‘bums on seats’ and I would like to ‘fill the room’ to make my inevitable payback worthwhile.
At times over the past 15 months, I’ve been upset by the the sheer level of fake news being spread. The false information was wide-ranging from the persistently annoying term ‘chronic fatigue’ being used instead of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome to Post-Exertional Malaise being described and categorised as ‘fatigue’. The fake news has made me doubt my own contribution to awareness-raising and educating professionals, it’s as if no-one had ever heard of M.E or that it is mostly (80%) triggered by viruses. For a few months in 2020, I felt like I was living in a parallel universe where my whole advocacy existence since 2014 was in doubt!
Taking part in previous M.E awareness months have made me very aware that upping my advocacy game for a whole month is simply not achievable with limited energy so, as with last year when I was in the first 8 weeks of Long Covid and still felt acutely sick, I am ‘only’ marking M.E awareness week and International M.E Awareness day on May 12. My week stretches from Saturday 8th May (yesterday) to Friday 14th May, there will be a few extra new bits and bobs to help spread awareness about our disease.
My May 12 talk is called ‘Patient Voices’, the title has a double meaning. I will be raising awareness from a patient perspective and I have pre-recorded interviews with a couple of patients for the event. The second meaning of patient is something that has been very clear to me since February last year, our community has been patient for a very long time, and patience is something I’m starting to run out of after seeing the speed that scientists and medics have created vaccines, learned from a standing start, and ‘doubled-down’ on research to solve a global crisis.
M.E is a global crisis, where is the urgency with our disease?
As time goes on, I am seeing increasing numbers of Long Covid patients being diagnosed with M.E, C.F.S, or M.E/C.F.S by their Doctor. We knew it would happen and I’m very weary of having the same conversation over and over as to whether Long Covid is or is not the same as M.E/C.F.S. As I tweeted earlier today –
Many LCs are, rightly or wrongly, being given M.E or CFS diagnoses. Until there is a diagnostic test that’s how it has to be if they meet criteria. Same as the rest of us…. whatever the trigger.
What upsets me the most is that as a patient community we know, prior to Covid19, most of the general public had no idea what M.E was. Most thought it was ‘just tiredness’ and many still referred to it as yuppy flu. Yet, now they have a chronic illness, a few Long Covid patients seemingly know enough about the disease to strenuously deny having it. We know there are multiple subsets of Long Covid, M.E is thought to be the result of one of those subsets.
My May 12 event will be pure M.E awareness, we need to go back to basics and highlight what the illness has always been and what the patient experience of having it is like.
Sally and Foggy (OBVIOUSLY)
In case you missed the subtly placed links –
Event info – https://www.eventbrite.co.uk/e/patient-voices-virtual-international-me-awareness-day-event-tickets-149544097421
Donate here (please) – https://www.justgiving.com/fundraising/foggy-may-12
Foggy and I hope to raise £1000 with this event and have so far raised £200. Every donation, whatever the amount, will be very gratefully received. All money is going to Cure ME for biomedical research.