My family of MEEPS and thoughts on COVID long-haulers

[Kitty]

Interesting – I tried pasting the link into a private browsing window in Safari, and got this:



Then repeated exactly the same process (literally pasting the same copied link into a new window), and it worked. Too brain-fogged to think about why, but it's worth trying it more than once!

 

[NelliePledge]

Yes I get the paywall as well.

 

[Helene]

Yes I get the paywall as well.

I'm sorry it's not working for you. If you have the energy can you please try a two finger click (or right click) on the link in my original post and then click on "Open Link in Incognito Window" and see if that works for you?

 

[Kitty]

Just tried that; the article loads momentarily, and then is replaced by the sign-in screen.

Pressing 'reader view' on Safari (which often gets around article sign-ins, especially those where there is no payment required) results in a screen showing the title of the article but no text.

I think it's probably only because I have visited before. Using a different browser takes me straight to the full article.

 

[rvallee]

Interesting! My perception of usage in the UK is that 'peeps' often means members of an identifiable group, without implying that they necessarily know or are in direct contact with each another. The ME community's a good example.

True. Probably straddles acquaintance as much as friend.

 

[rvallee]

So asking from the above mentioned role, can you please explain?

Oh I just meant a hypothetical role that ICanCME or its technical staff could fill, if only the expertise were recognized along with the link between ME and Long Covid. Right now nobody knows enough to know where to start, this is something that could be helped enormously if ME/CFS researchers played a larger role here, at least on the PVFS aspect.

But only if there ever is a coordinated effort. So far it seems to be mostly small grants with not much in the way of actual leadership.

 

[dreampop]

Thank you rvallee and to all the other kind commenters. I have to admit I posted the article here with some trepidation thinking it might be torn to threads. Will pass your comments on to Nadine.

I'll take a teeny bit of credit for the facts as her ahem "research assistant"

So asking from the above mentioned role, can you please explain?

I hope you feel more welcome to comment and enjoy the forums.

 

[adambeyoncelowe]

Interesting! My perception of usage in the UK is that 'peeps' often means members of an identifiable group, without implying that they necessarily know or are in direct contact with each another. The ME community's a good example.

'Peeps' is from 'people'. E.g., 'Hello my peeps!' means 'Hello my people (as in friends, colleagues, peers, etc)!' MEeps or MEEPS would be ME + peeps.

 

[Helene]

So in case anyone is interested and able to watch, here's the video of my daughter, Nadine Sander-Green's interview with Solve M.E. yesterday. She talks about our family's journey with ME and the importance of storytelling in raising awareness of our historically neglected illness.



Edited to make link show in post

 

[Hutan]

@Helene, you must be very proud of your daughter. Nadine is an impressive woman, she spoke well on the interview. I hope the birth of your grandchild is a joyous time for you all.

 

[Helene]

@Helene, you must be very proud of your daughter. Nadine is an impressive woman, she spoke well on the interview. I hope the birth of your grandchild is a joyous time for you all.

Thank you so much for your kind comment & good wishes @Hutan! I'll pass this on to Nadine.

 

[Arnie Pye]

My perception of usage in the UK is that 'peeps' often means members of an identifiable group

I thought peeps was just short for "people".