iiinova — where your digital self keeps evolving

Reposted by Rosanna

ThereForME @thereforme.bsky.social · 04/12/2024

Who do you think is behind door number 5? #ThereForMEAdventCalendar

The image shows 3 baubles. One is fairly gaudy, one has a big question mark in it, and one contains a very blurry photo with the number 1. The caption reads "Guess who's #ThereForME!"
Here's a clue for alt-texters: gold

074

Reposted by Rosanna

Dr Jo Greer @drjogreer.bsky.social · 04/12/2024

Thank you @rory-stewart.bsky.social l for your advocacy for people with #LongCovid & #MyalgicEncephalomyelitis My 17 yo daughter had Covid Pneumonia in Sept 21. V. sick since & now bedbound & tubefed #SevereME. She needs an NHS #ThereForME Please invite @binitakane.bsky.social on your podcast.

084

Reposted by Rosanna

ThereForME @thereforme.bsky.social · 03/12/2024

Who do you think is behind door number 4? #ThereForMEAdventCalendar

The image shows 3 baubles. One is fairly gaudy, one has a big question mark in it, and one contains a very blurry photo with the number 4. The caption reads "Guess who's #ThereForME!"
Here's a clue for alt-texters: pod

0136

Reposted by Rosanna

Karen Hargrave @karenlhargrave.bsky.social · 03/12/2024

Big thanks to @natashadevon.bsky.social for her advocacy and for her Christmas message 👏👏👏👏

1144

Reposted by Rosanna

ThereForME @thereforme.bsky.social · 03/12/2024

@lbc.co.uk presenter @natashadevon.bsky.social is #ThereForME! Her message: “For people affected by ME and Long Covid, please know that you are in my thoughts this Christmas and I will continue to advocate for you whenever I can. Sending you so much love, Natasha Devon” #pwME #pwLC

A pretend polaroid shows Natasha Devon posing for a photo holding a #ThereForME Christmas card. The image on the card shows two presents, one labelled "patient safety", the other "research". The photo is labelled "X". The design is in the #ThereForME colours.

This second image displays Natasha Devon’s handwritten message. It reads “For people affected by ME and Long Covid, please know that you are in my thoughts this Christmas and I will continue to advocate for you whenever I can. Sending you so much love, Natasha Devon”

610035

Reposted by Rosanna

Carole Bruce @cabruce.bsky.social · 02/12/2024

Up and running again for #ME people! I have sent an amended version of the template letter to my MP, it would be great if we had as many MPs as possible attending. 💥APPG Inaugural Meeting - 17 December 2024 - All-Party Parliamentary Group on ME

052

Reposted by Rosanna

ThereForME @thereforme.bsky.social · 01/12/2024

Here's the clue for tomorrow's #ThereForMEAdventCalendar. Can you guess who it is? Find out tomorrow at noon.

The image shows 3 baubles. One is fairly gaudy, one has a big question mark in it, and one contains a very blurry photo. The caption reads "Guess who's #ThereForME!"
Here's a clue for alt-texters: Leigh

2159

Reposted by Rosanna

Emma Gore-Lloyd @emmagl.bsky.social · 30/11/2024

Can you guess, can you guess?

022

Reposted by Rosanna

Karen Hargrave @karenlhargrave.bsky.social · 30/11/2024

And the fun begins… 😍 Can you guess who’s #ThereForME for 1 December?

164

Reposted by Rosanna

Karen Hargrave @karenlhargrave.bsky.social · 18/11/2024

We are sad to announce that #ThereForME has suspended our collaboration with the ME Association. We feel that concerns from the community must be heard. The door remains open to continue our collaboration once action is taken and concerns addressed. More here 👇

We are very sad to announce that the #ThereForME campaign has suspended our
collaboration with the ME Association.

Like others in the ME community, we have deep concerns about a recent editorial published
by the ME Association and authored by the ME Association’s Chairman (‘Animals need to
move’). We wrote to the ME Association today expressing concerns about the editorial and
asking for an update on the actions that the ME Association would be taking to address
them. We did not feel that the response we received was adequate and so we have taken
the decision to suspend our collaboration with immediate effect.

We are very proud of how we have managed to bring the ME and Long Covid communities
together under a shared advocacy message since launching the campaign four months ago.
We believe our community is strongest when we can work together and so this is not a
decision that we have taken lightly. However, we are also very grateful for the trust we have
built with the ME community. We therefore feel that we cannot in good conscience continue
our collaboration with the ME Association until the very valid concerns from the community
have been sufficiently addressed.

We have made clear to the ME Association the actions we believe are necessary from their
side in order to resume our collaboration. The door remains open to continue working
together once we feel sufficient action has been taken. We very much hope that this will be
the case.

In the meantime, we will be focusing our time and energy on what we feel our campaign
does best: speaking up for people with ME and Long Covid, who will always be at the heart
of our campaign.

Karen, Emma and Oonagh

2218145

Reposted by Rosanna

Conor Browne @brownecfm.bsky.social · 13/11/2024

Canadian H5 patient: sequencing confirms Influenza A (H5N1), clade 2.3.4.4b, genotype D.1.1. Not the same genotype that is infecting dairy cattle and dairy workers in the US. Responsible for poultry outbreaks in Canada. How the patient was infected remains unknown www.canada.ca/en/public-he...

canada.ca

Statement from the Public Health Agency of Canada: Update on Avian Influenza and Risk to Canadians

The Public Health Agency of Canada (PHAC) today confirmed a human case of avian influenza (also known as bird flu) caused by influenza A(H5N1) virus in Canada.

616665

Reposted by Rosanna

flowermad @flowermad.bsky.social · 16/10/2023

Please sign and share this petition to help Karen a severe ME patient who is not getting the help she so desperately needs from the hospital! It is so close to the 10,000 signatures! www.change.org/p/save-karen...

0129

Reposted by Rosanna

Open Medicine Foundation (OMF) @openmedf.bsky.social · 13/10/2023

OMF's Annual Directors Gathering brings together all our CRC directors and the esteemed SAB member, Dr. Maureen Hanson. 🤝 During these three days, this group discusses the state of research within OMF and in the broader research community. 👉 Stay tuned for more details.

183

Reposted by Rosanna

Tom Kindlon @tomkindlon.bsky.social · 12/10/2023

New from Scotland: "People With #LongCOVID and #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (ME/CFS) Exhibit Similarly Impaired Vascular Function" Free fulltext: www.amjmed.com/article/S000... #MEcfs #CFS #PwME #MyalgicE #PwLC #postcovid #postcovid19 #LC

1229

Reposted by Rosanna

European ME Coalition (EMEC) @emec.bsky.social · 05/10/2023

We have a dedicated page for #MECFS scientists who are looking for ways to fund their biomedical research. We hope this will be a useful collection of resources to those who are studying ME and also #LongCOVID europeanmecoalition.com/resources-fo...

14220

Reposted by Rosanna

Olenka Sayko @osayko.bsky.social · 01/10/2023

Well it’s spooky szn! And nothing is spookier than having a LDN incurable and disabling complex chronic illness like #MECFS. That’s why all month long I’m fundraising for Open Medicine Foundation. Donate/share/etc so we can raise as much money as possible! openmedicinefoundation.crowdchange.co/35021

openmedicinefoundation.crowdchange.co

Open Medicine Foundation | Fundraisers

Open Medicine Foundation (OMF) envisions improved health care for people with chronic complex diseases.

02112