I'm joining the call for up-to-date scientific representation & meaningful patient engagement in Long Covid and ME. I'm proud to support the Open Letter to RCPsych, backed by 58 orgs & 1200 signatories. #HearOurVoices#RCPsychIC
📩 tinyurl.com/46enh82n
We are LIVE at the Royal College of Psychiatrists Congress NOW.
This is to ensure the concerns of the community are heard about the framing of Long Covid (in a very British, polite way!)
#RCPsychIC
More details & about our social media campaign 👇️
🖇️ longcovidadvoc.com/post/rcps…
🎙️ on Substack
ALT An image featuring a digital flyer or promotional graphic for a health campaign. The background is a slightly desaturated, darkened photograph of the Liverpool waterfront skyline, prominent with the historic Royal Liver Building and its distinct clock tower under a clear, pale sky. Overlaid on the center of the image is white serif text that reads: "Long Covid Advocacy at the Royal College of Psychiatrists Congress - Now!" Below this main headline, a subtitle reads: "#HearOurVoices Campaign: Help us ensure our community is heard". Near the bottom of the image, the source is credited in italicized white text as "Long Covid Advocacy", with the website URL "LONGCOVIDADVOCACY.SUBSTACK.COM" printed in small, clean sans-serif capital letters at the bottom left corner. In the bottom right corner, there is a small white icon depicting a stylized architectural symbol consisting of three horizontal bars under a pointed roof line.
SOCIAL MEDIA OUTREACH TOMORROW!
At 10am Paul Garner, Trudie Chalder & Alan Carson are presenting on Long Covid at RCPsych Congress.
The community have serious concerns about this framing. 58 orgs & 1200 signed an open letter.
Template to C P below 👇️
ALT Campaign infographic titled "#HearOurVoices" and "#RCPsychIC", demanding better ME and Long Covid framing from the Royal College of Psychiatrists. Left side shows a woman pushing a young woman in a wheelchair on a path. Below this, a dark block titled "1 Why?" states 58 orgs and 1200 people signed an Open Letter regarding concerns over Long Covid framing at the 2026 International Congress, noting "our concerns remain."
The main text outlines a "Social Media Campaign" with three steps: 1) JOIN community outreach on June 15th, 2) POST your story for congress attendees, 3) AMPLIFY using tags #RCPsychIC and #HearOurVoices. It provides a post template supporting up-to-date scientific representation and meaningful patient engagement. Bottom right includes a pink QR code, a link to "longcovidadvoc.com", and the "LONG COVID ADVOCACY" logo. A bright pink footer reads: "International response raises concern about Congress framing of Long Covid."
I'm joining the call for up-to-date scientific representation & meaningful patient engagement in Long Covid and ME. I'm proud to support the Open Letter to RCPsych, backed by 58 orgs & 1200 signatories. #HearOurVoices#RCPsychIC
I'm joining the call for up-to-date scientific representation & meaningful patient engagement in Long Covid and ME. I'm proud to support the Open Letter to RCPsych, backed by 58 orgs & 1200 signatories. #HearOurVoices#RCPsychIC
📩 tinyurl.com/46enh82n
Please read about this social media campaign on Monday 15th June by @LongCovidAdvocacy. Help raise awareness and support by saving and sharing the leaflet below. 👇
#HearOurVoices
🗞️ Stop Press: MON 15th - We are coordinating an outreach campaign to the Royal College of Psychiatrists Congress to ensure the community's concerns about the framing of Long Covid are heard.
This is a powerful opportunity for them to #HearOurVoices
Template to C P below 👇️
ALT Campaign infographic titled "#HearOurVoices" and "#RCPsychIC", demanding better ME and Long Covid framing from the Royal College of Psychiatrists. Left side shows a woman pushing a young woman in a wheelchair on a path. Below this, a dark block titled "1 Why?" states 58 orgs and 1200 people signed an Open Letter regarding concerns over Long Covid framing at the 2026 International Congress, noting "our concerns remain."
The main text outlines a "Social Media Campaign" with three steps: 1) JOIN community outreach on June 15th, 2) POST your story for congress attendees, 3) AMPLIFY using tags #RCPsychIC and #HearOurVoices. It provides a post template supporting up-to-date scientific representation and meaningful patient engagement. Bottom right includes a pink QR code, a link to "longcovidadvoc.com", and the "LONG COVID ADVOCACY" logo. A bright pink footer reads: "International response raises concern about Congress framing of Long Covid."
Thames Water wants to set its own rules. The Board of Ofwat is split over whether to let them. Tip the scales in favour of people and planet: email the Board now, and urge them to reject Thames Water's creditors @We_OwnItweownit.org.uk/stop-thames-w…
Psychiatry as a profession…..you will not learn till there’s accountability and dismissal.
Can the failing Psychiatrists from the Nottingham Inquiry be dismissed asap.
Can we make an example of them to improve standards….now…let’s not wait for the conclusions.
Our country needs to be in safe hands now and we don’t have time to wait for another disaster.
I would like a call from @jamesmurray_ldn your private sec has my number.
Let’s get rid of terrible Psychiatrists and shine a light on the good services.
@rcpsych@nuwandiss@AllisonPearson@redrumlisa@Fhamiltontimes@Alison1mackITV@EmilyMayTV@GBNEWS@MartinDaubney
Save Caroline Roberts’ Life now: A very severe #ME/CFS patient with high mortality risk. - Sign the Petition! c.org/sQhHQ9BLRb via @UKChange
It’s the same terrible story. Caroline was admitted to hospital last week. The hospital refuses to offer any nutritional support 😡
Someone was putting together a thread of specialist clinicians for ME/CFS.
Here’s @wecrunchme list I wanted to share (sorry I can’t locate the original post now)
crunchme.notion.site/clinics…
Urgent to the #LC#mecfs community
Lack of reasonable care in hospital occurring for a severe patient
Sharing a letter for the NHS ceo of the hospital
docs.google.com/document/d/1…
They ask that you send an email if you can
Also will post their GFM
gofundme.com/f/get-caroline-…
We are proud to be one of the 58 orgs & 1200 individuals to sign this open letter regarding the framing of Long Covid in the Royal College of Psychiatrists 2026 International Congress
longcovidadvoc.com/post/open…
2025 update: 318.8bn € in cumulative costs from Long COVID and ME/CFS in Germany since 2020. More than 60 % of Germany's entire federal budget. Almost three times the defense budget. And the sum grows every year. Only research breaks this. Report: t.ly/5HMbW
ALT The image shows the text "318.8 billion euros" in large numbers, with the text "In just six years. These are the cumulative societal costs of Long COVID and ME/CFS in Germany." provided below.
Early women pioneers of climbing such as Lucy Walker, the first woman to summit the notorious Matterhorn mountain in 1871 all wore skirts on their climbs..... #WomensArt
We're back for our first #ThereForME Update in a while!
Today we're sharing a roundup from ME Awareness Month (AKA May 📅) - from World ME Day events, to research announcements and ME in the media.
Link in next post 👇
ALT #ThereForME Update 32: ME Awareness Month. A round-up of World ME Day events, recent research announcements, and ME in the media. New #ThereForME Substack post.