How Did We Do? M.E Awareness Week 2021

Well, that was certainly energy draining!

ME Foggy Dog has learned from past experience of taking part in M.E awareness months and took the decision to ‘only’ actively take part in M.E awareness week this year. As a M.E patient myself, I simply do not have the energy to ‘up my efforts’ for a whole month given the amount of ‘awareness raising’ I do all-year-round. I decided that ME Foggy Dog’s M.E awareness week would run between Saturday 8th – Friday 14th May. Different charities chose different weeks this year so as long as it covered May 12 (International M.E awareness day) it didn’t really matter which day the week started/ended. Is this something to be looked at for future years? Is it not better to all have the same week?! Concentrated effort between specific dates might lead to better engagement worldwide. Just a thought.

The main focus of our awareness week was our online ‘event’ on May 12. This year, because Covid19 means our usual means of fundraising/awareness-raising was not possible, I opted to try something we have not tried before. I’ve held face-to-face awareness talks before and attendance has always been hit and miss. Surely, an online event would be easier in terms of getting bums on seats? (HA!). One thing I have learned from this years’ experience is that location and ticket cost are irrelevant. The lack of attendance is due to a lack of interest. Blunt, but sadly true. I used every means at my disposal to reach as many people as possible. I paid (out of my own pocket – not Foggy’s) for online advertising. I ‘reached’ 12,000 people. 75 people clicked through and signed up. Historically, I have often wondered if the following were factors-

  • Ticket cost
  • Location
  • Date
  • Time
  • Didn’t see event details

I took all of the above into consideration with this event. I held it in the evening so more people could tune in after standard ‘work hours’ (even though that is 100% not appropriate for MY M.E!) it also made it more accessible for different time zones. The event was online so there were zero travel/costs, and I originally asked for a donation cost for a ticket on Eventbrite but changed it to free after a few days due to no sign ups in case that was a deterrent.

As I stated in the Eventbrite event info, the event was aimed at people who did not have M.E. Patients were welcome but I wanted most of the audience to have their awareness raised. I knew getting ‘bums on seats’ would difficult but….wow. Of those that attended, I would say 75% were non-M.E aware people so I’m happy about that. Some couldn’t attend and sent apologies and asked for the YouTube link to watch it at a later date. That is one positive I am taking away from this event. I know with 100% certainty that I reached at least 50 people from outside of our community. Some of these people have sent follow-up emails and I’m hoping my event leads to further actions and progress.

Social media

As a community, we know that we are in an echo chamber. I see the same people sharing, liking, and commenting on my posts. I am always 100% grateful for engagement but fully acknowledge the squeal of delight when someone from outside of our bubble engages. That’s the aim isn’t it?! We do not need to raise awareness of our plight within our community. Our echo chamber has always frustrated me but this year particularly so. In fact, this year, I’d say that even parts of the echo chamber weren’t paying attention. I’m trying to work out if lack of engagement is due to social media user ‘behaviour’ or algorithms.

Here are ME Foggy Dog’s social media stats from M.E awareness week (8th – 15th May)


Impressions – 60.8k

Engagement rate – 3.8%

Link clicks – 128

RTs without comments – 149

Likes – 981

Replies – 129



Facebook is much more difficult to work out due to the pesky algorithm. I’ve put the top 3 posts during that week below. I think we can all agree that engagement was poor overall, though it was great to see Foggy’s chauffeur getting in on the action!




Next up, Instagram

In this collage pic, you can see the number of impressions of some of the posts from the awareness week . Each post also had a number of likes/comments too. ME Foggy Dog’s Instagram page reached 1177 accounts and had 769 ‘content interactions’ during this specific week.



394 LinkedIN users saw my posts about the May 12 talk. Posted on May 13 and 14.  4 likes and 4 comments from M.E patients. I posted on LinkedIN to reach ‘professionals’. I had no idea what to expect but these figures give me something to build on in future.


Below is the graph relating specifically to M.E awareness week. Well over 127 people have now watched the ‘Patient Voices’ May 12 recording (today is 2nd June). The exact figure is not known as some social media platforms do not ‘play nicely’ with YouTube and so the click throughs from links are not counted and included in YouTube stats. I’ve been told by a number of M.Eeps that they shared the link via Whatsapp and email – those views will also not be included in these figures. So, I can only say that a minimum of 127 people have watched the recording.

‘Patient Voices’ – 86 views

These three smaller interview videos were aired during the May 12 talk.

Interview with Retha Viviers (M.E/C.F.S South Africa) – 57

Caroline Kingdon (Cure M.E)interview – 17.

Bill Clayton (York M.E Community) – 15

Thank you to Retha, Caroline, and Bill for taking part in this pre-recorded bit of my virtual event!

All of the videos mentioned above can be seen on ME Foggy Dog’s YouTube channel – Subscribe today!

I’ll admit that I was underwhelmed by the engagement, the above statistics in no way reflect the amount of effort and energy used before, during, and after the May 12 event. I’ll also admit that I took it personally. It would be very hard not to, Foggy is me. When my ‘Foggy work’ doesn’t do as well as I would like, I take that personally. I shouldn’t, but I do. That is why I ‘stepped away’ from Foggy’s social media at the end of that week. I needed head space and needed to evaluate what had just happened! Not to wallow or indulge in self-pity but to learn, see what worked and didn’t work, and where I can improve in future.

I received some feedback from a M.E patient after the event. I was told that the event was far too long for people whether they had M.E or not and I should have edited the recording. I disagree. During the pandemic, I have sat through very long, very dull, seemingly endless business talks/webinars that are between 1 hr 30 and 3 hrs long. It is something I do fairly regularly, health permitting. A 1 hr 10 minute talk (interspersed with video interviews) plus a very brief Q & A is not out of the ordinary. I also think the fact that I was completely wiped out after the event, and unable to work on editing the 1 hr 19 minute recording, could have been taken into account! Personally, the fact that this event seemed ‘normal’ might explain why many outside of our bubble didn’t see it as a challenge that was fundraiser-worthy. They did not see the behind the scenes effort that affected my health or the 12 days of ‘payback’ that hosting the event caused.

Aside from this feedback, I received overwhelmingly positive feedback from those who attended and I am very grateful for their encouragement. I can tell who has and hasn’t watched it…… I know who has seen THAT….. and made sure I was ok. Thank you xxx


The May 12 event raised £425 for Cure M.E.  Thank you and Foggy snogs to the 17 people who donated xx



and Foggy (OBVIOUSLY) xxx