Amy Boylan

‘I was in denial about it’: actor Matt McGorry on having long Covid Orange Is the New Black and How to Get Away With Murder star speaks about the disease and another way of looking at health

High quality advocacy from Matt
✊💙
"If we’re only focused on individual change and not on the systemic issues that actually have a larger impact on health, like poverty and lack of access to medical care, then what we’re doing is not really about health."
www.theguardian.com/wellness/ng-...

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

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 👇

Meet the Perthshire GP long Covid sufferers turn to when no one else can help Dr Claire Taylor - who set up Scotland's first private long Covid clinic in 2022 - gets around 300 emails from people asking for appointments each week.

So grateful to Dr Taylor 🙏 but not everyone can afford private care. The NHS must do better & help kids affected by #LongCovid.

“We were at our wits end in trying to find someone to help us. Without Dr Taylor, my son would still be bed bound.”

#LongCovidKids

www.thecourier.co.uk/fp/lifestyle...

Article snapshot from The Times - Give us the ME care we were promised, campaigners plead. Photo of a lawn with a bed on it and large sign #CANYOUSEEMENOW?

🗞️In The Times feat ME Action for Scotland
"We believe it is only a matter of time before a patient with severe/very severe ME dies in Scotland due to the lack of health care provision and the extremely limited training for healthcare professionals.”

Open access article 👇
archive.ph/3iVtq

Petition: Introduce new air quality and PPE rules for health and social care settings We want the Government to set new rules on air quality and infection control in health and social care settings, to prevent and control airborne infections, with new ventilation and filtration require...

#UK Please support this petition to reintroduce #PPE in hospitals and set new rules for air quality to reduce #Covid transmission
petition.parliament.uk/petitions/70...
@longcovidsos.bsky.social @longcovidadvoc.bsky.social @longcovidsupport.bsky.social @cvcev.bsky.social @longcovidkids.bsky.social

this is an extremely important reminder - remember that he kicked off his last administration with the Muslim Ban

this time will be far worse, immediately, to send the message that resistance is futile

it isn’t

A beautiful system to BLOCK all the MAGA trolls IN ONE CLICK

Click on this list bsky.app/profile/did:...
Subscribe to it
It offers you "block all"
Block them in one click

Thank you @bsky.app

Please feel free to pick at my starter packs for some (not limited to Long Covid, despite name) tbc. I've has some successes in getting clean air into public spaces, but it's an ongoing battle
Starter pack 3. go.bsky.app/Q9FoCjK
Starter pack 2. go.bsky.app/MjGuFEe
Starter pack 1. go.bsky.app/JvVAoFt

Massive thanks for giving your energy to this 🙏❤️

Spot on! I assumed the vaccines we have were a first-pass and we’d see continuous development of more effective ones. But that now feels like it might be wishful thinking 😬

Covid hasn’t gone away, half my town has walking pneumonia and we have a box-fresh warning from the CDC about H5N1. Ummm, you’ll not be seeing my teeth for the foreseeable!

I’ve made a start on the @thewhn.bsky.social Long Covid starter pack.

There’s a few more to add and to sign up to Bluesky (will reshare when updated)

go.bsky.app/JM91FSV

Worldwide Mask Bloc Directory – Find your local Mask Bloc MaskBloc.org lists active Mask Blocs around the world. Free high-quality masks, COVID-19 tests and other equipment for your community. Mutual Aid & We Keep Us Safe.

Reasons to wear an n95:

1) COVID never ended

2) Unmitigated pandemics are a tool used to harm marginalized people & you won’t participate

3) CDC is tweeting about avian flu symptoms to watch for

4) It’s a real bad time to risk illness & disability

5) It offends MAGA

Get/give mask mutual aid:

Disabled and chronically ill people - be gentle with yourselves & each other right now. This is an intensely stressful time - one that’s bound to cause health and emotional setbacks.

Its ok. It’s not your fault. Take time to grieve & recharge.

Posting this as much for me as anyone else.

A doctor. Headline: If You Have Enough Energy To Moan, Is There Really Anything Wrong With You? Story by Ulma Sangerbock and Dr Seymour Kashbak Photo AdobeStock_133334155

If You Have Enough Energy To Moan, Is There Really Anything Wrong With You?

A girl suffering fidget spinner debt Headline: CDC Puzzled By Unprecedented Rise In Respiratory Illnesses Among Children, Say It’s Probably Caused By Fidget Spinners Or Something Story by Trevor Enkelwield and Fox Mouldier Photo Adobe File #: 345129279

CDC Puzzled By Unprecedented Rise In Respiratory Illnesses Among Children, Say It’s Probably Caused By Fidget Spinners Or Something

💯🎯

Patients from ME/CFS and LC communities, please sign up for @openmedf.bsky.social StudyME platform. This is a research study registry for patients globally and for research projects beyond just OMF funded studies. This is your opportunity to participate and be counted.

We’ve been there for you and now we need your help.

Donate today to ensure we can continue to lobby policy makers for change, and be there for every family that needs us into 2024.

longcovidkids.org/donate

#LongCovidKids #LongCovid
#Donate #Charity #Children

Hashtag For Hope Campaign For Long Covid Kids Please download our campaign images to share along with text and the campaign hashtags, #ListenLearnHope #GiveUsHope

Friday is a big day for our community, we get one '#LongCovid' day at the UK Covid Inquiry hearing, and it's been a big build-up for our team.
Your support in advance is much appreciated.
We can't do this alone.
#ListenLearnHope #GiveUsHope #CovidInquiry
www.longcovidkids.org/post/hashtag...

Flyer promotion for an event. Flyer reads: THE BLACK LONG COVID EXPERIENCE Black Women and Families: From Dismissed to Diagnosed A Virtual Event Sunday, October 15, 2023 - 3PM ET/12PM PT FOR ONE HOUR ONLY: Plan and strategize the request and acquisition of your #LongCovid medical diagnosis from doctors and healthcare officials. Approach politicians locally, nationally, and federally to receive resources pertinent to your family's overall care. Receive tips on filling out your own Social Security and/or Social Services paperwork and/or hiring a SSDI lawyer or third-party advocate. Gain support from other #LongCovid advocates and patients by telling your story. WITH A SPECIAL Q&A SESSION! Meet our Host and Expert Panelists: Chimére L. Sweeney Host and #LongCovid Writer, Storyteller, and Advocate Brooke Keaton is a #LongCovid advocate, speaker, and panelist Cynthia Adinig is the co-founder of The BIPOC Equity Agency

@chiluvs1 on Twitter has requested that #MECFS and #LongCovid people promote this. Share it around!

#DecodeME needs more UK participants with an ME/#CFS diagnosis, incl. those diagnosed following Covid infection, & reminds people who have been sent a spit kit to return them. Final date for submitting the questionnaire is 15th November at 5pm

www.decodeme.org.uk/portal/

#MEcfs #MyalgicE #PwME

As the LongCOVID and MECFS communities migrate here, note that site culture emphasizes use of alt tags. Since alt can be hard for a lot of us, you can use @ alt-text.bsky.social in comments for text heavy images. You can also tag Alt4Me in comments and someone will write text for the image.

UKHSA and ONS launch new Winter COVID-19 Infection Study A study to gather vital data on COVID-19 this winter has been launched by the UK Health Security Agency (UKHSA) and the Office for National Statistics (ONS).

A study to gather vital data on COVID-19 this winter has been launched by the UK Health Security Agency (UKHSA) and the Office for National Statistics (ONS) 👏

Good to see ONS going back to collecting data on COVID-19!

How I found my crowd on BlueSky *not about followers #1 Look, it's me! • Upload an avatar [drawing of avatar blob-person, underneath it says: It's me | I make arts] • fill out the bio. Make sure you mention what you do if you're looking for peers/fellow travelers •Make an intro post (so folks can see more of who you are) #2 SEARCH (a little) [drawing of magnifying glass] • Find folks you know from other places (you only need to find a few, BECAUSE...) • Look at the follows/followers of folks you know! Just like in real life, they probably know other folks you do. #ENGAGE [drawing of two faces sharing a heart in a thought bubble] • Post stuff that has something to do w/the people you want to connect with • Comment on posts. On here replies are out front, other people see these and can find you! TIP: set your replies to 0 in Home Feed setting to see more replies NOTE: Comment sincerely and positively, not just to be seen. Avoid sarcasm and irony because they can come off as shitty.

#4 FIND YOUR FEEDS! [drawing of blob-person yelling "it's all about feeds!"] • Find/follow feeds that collect what you're interested in... [Liked by 200 users 9with curser arrow pointed at it)] • Look at "liked by" to find folks to follow... [drawing of blob-person w/ hand to chin, saying "hmmmm"] • Inspect the feed to discover terms the feed uses to select posts (some feeds tell you) • Use these terms when posting about the thing (kinda like a #) so more people can find you. TIP: there's no algorithm here, so you can repost your own post without being penalized. You can also repost old posts, it's fine! You don't need to be a "content" machine ♥Rori!

A friend asked me for tips on finding your crowd here. I've been lucky in finding cool folks I know from elsewhere & new folks, but it does take a little investigating and work :) So here are a few tips if you're new and wondering where to start (not comprehensive!)

Thanks @kateburgener.bsky.social

Initial findings from the DecodeME questionnaire data published - DecodeME We’ve analysed questionnaire answers from the first 17,000 DecodeME participants and the results have been published by NIHR Open Research – read the paper HERE. We are still recruiting participan...

The DecodeME study is still looking for participants, so spread the word. 19,000 DNA samples taken so far 🧬👍🏻 #PwME #MWCFS

www.decodeme.org.uk/initial-find...