Sign in

Long Covid SOS

@longcovidsos.bsky.social
2.8K followers 143 following 409 posts

UK based charity advocating for those impacted by #LongCovid Recognition - Research - Rights www.longcovidsos.org info@longcovidsos.org Charity reg no 1199120

PostsRepliesMedia
Reposted by Long Covid SOS
George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
17925171709
Reposted by Long Covid SOS
Lucibee @lucibee.bsky.social · 09/02/2026
About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS... 🧵 1/n
Email sent to NHS elearning enquiries on 12 January 2026. 

Subject - Request for information.

Dear NHSE elearning hub,

I am making a freedom of information request (FOIA 2000) for the following data.

In 2024/5, the NHS England elfh e-learning hub introduced 3 new modules on ME/CFS:

1. An introduction to ME/CFS (May 2024).
2. ME/CFS: guidance for community-based healthcare practitioners (January 2025).
3. Managing Severe ME/CFS (September 2025).

Please can you tell me how many people have completed each module to date (from date of introduction), and what the breakdown is for logins by NHS staff (nhs.uk), and those in government (gov.uk), academic (ac.uk), and social care sectors (if available). 

I am happy for your response to be sent to this email address.

Many thanks for your help,

Lucy B
710048
Reposted by Long Covid SOS
Natasha Devon @natashadevon.bsky.social · 24/09/2026
George will be coming on my show this weekend to discuss this very important article.
28436137
Reposted by Long Covid SOS
Lindsay Skipper @lindsayskipper.bsky.social · 22/09/2026
For those too unwell to read the full paper or thread, here is short animation to show what happened in the ERASE-LC trial which tested the drug Remdesivir with people who have long Covid bsky.app/profile/prof...
1108
Reposted by Long Covid SOS
George Monbiot @georgemonbiot.bsky.social · 22/09/2026
Sorry not to be reply to everyone who responded to my info request about #ME/CFS treatment y'day. Totally overwhelmed by utterly horrific stories. Now busy pulling it all together. And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions. 1/2
29704114
Reposted by Long Covid SOS
Action for ME @actionforme.bsky.social · 18/09/2026
📢 New self‑advocacy resource now available: Impact Statement Template. Our new resource helps people with ME communicate how ME affects them and what support they need. Download here 👇 www.actionforme.org.uk/resource/imp...
Graphic promoting an Action for ME self‑advocacy resource titled “Impact Statement Template”. The image highlights how the template helps people with ME explain how the condition affects them and what adjustments would support them. Action for ME logo in top right.
096
Reposted by Long Covid SOS
George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice. #ME/CFS
28769201
Reposted by Long Covid SOS
George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.
129710286
Reposted by Long Covid SOS
The Vertlartnic @thev.bsky.social · 15/09/2026
Why Are So Many Young Women Being Diagnosed With Chronic Health Conditions, Apart From The Obvious Reason
A young woman with chronic health conditions
Headline:
Why Are So Many Young Women Being Diagnosed With Chronic Health Conditions, Apart From The Obvious Reason
Story by Mal Evolent and Pippy Notnice

Photo from Adobe
517443
Reposted by Long Covid SOS
Dan O'Hara @skeuomorphology.bsky.social · 15/09/2026
NHS England digital are proposing changes to their data releases, including stopping monthly data releases of covid hospital data. They propose to publish only in winter, alongside flu beds data.
43023
Long Covid SOS @longcovidsos.bsky.social · 11/09/2026
#LongCovid hasn’t gone away. People have just become much less visible - stopped working - stopped going out - had to change their lives completely - no longer being counted in the same way. Lack of testing has ramifications. Burying the statistics matters. Less visible doesn’t mean less affected
Graphic with a pale grey, wall textured background with Long Covid SOS lifering shape. Large but faint text reads “Long Covid hidden in plain sight”, with “Long Covid” circled in orange. At the bottom is the Long Covid SOS logo with the words “Campaigning for us all”.
13613
Reposted by Long Covid SOS
The Sick Times @thesicktimes.org · 08/09/2026
As @mileswgriffis.bsky.social and his husband participated in the effort to rehabilitate the burn scar from the 2020 Dome Fire, the ritual of planting the Joshua trees took on an even greater meaning when he realized the uncanny overlaps with the COVID-19 pandemic. thesicktimes.org/2026/09/08/w...
Black text over an image of the Dome Fire burn scar reads, “After a lightning bolt hit the forest in August 2020, igniting the fire, Cima Dome became forever bound to the COVID-19 pandemic for me. It was the year I lost both my health and my refuge. Things only got worse in 2023, when a second fire broke outignited in the preserve, burning nearly 100,000 acres and killing another 1 million Joshua trees. Where do you mourn when your sanctuary suddenly becomes a place to grieve? Miles W. Griffis, The Sick Times.” Black text over an image of the Dome Fire burn scar reads, “Because I lost my abilities to the pandemic, this wild gardening has given me some control to confront two crises at once. I plant Joshua trees and leave out water for our nonhuman neighbors to offer mutual aid for the environment. I name each tree to oppose our society’s denial of the pandemic’s “incalculable” mass death and its continuing effects. I imagine each Joshua tree as a spiked fist rising from the ashes of indifference. Miles W. Griffis, The Sick Times.” 
16626
Reposted by Long Covid SOS
Prof Nisreen Alwan @nisreenalwan.bsky.social · 07/09/2026
We are inviting adults in the UK with lived experience of #LongCovid to be interviewed for a study exploring the role of local environment – please see our flyer for further details. Please share :)
12728
Long Covid SOS @longcovidsos.bsky.social · 06/09/2026
Yet another wave of COVID and prevention still isn’t being taken seriously. Until prevention is properly prioritised, we have to take responsibility for our own risk reduction. That means continuing with the practical precautions we know work, even if those around us have stopped taking them.
Infographic from Long Covid SOS titled “THE ONLY WAY TO PREVENT LONG COVID IS TO AVOID COVID”. It lists five ways to reduce the risk of catching and spreading Covid: 
Mask icon and text “Wear the best mask you can. Wearing a good mask like an N95 or better when in public will give you the best protection”
Home icon and text “Stay home and isolate if ill. If you feel unwell isolate yourself from others until you are feeling better and testing negative”
Unwell icon and text “Test if you have symptoms Symptoms of Covid? Isolate and test. Repeat test while symptomatic and mask around others”
Ventilation icon and text “Ventilate or meet outside. Clean air is the best way to prevent spreading and catching Covid so make sure fresh air is circulating”
Long Covid still has no cure
Medical icon and text “There is no cure for Long Covid so the best way to avoid it is to take steps to avoid catching Covid”
The graphic uses teal panels with white text and orange-and-white circular icons. Long Covid SOS branding appears at the bottom right and contact information FOR MORE INFORMATION OR HELP WITH LONG COVID PLEASE VISIT OUR WEBSITE WWW.LONGCOVIDSOS.ORG on left.
15024
Long Covid SOS @longcovidsos.bsky.social · 06/09/2026
Another day, another dismissive article. If journalists are reusing the same old tired arguments to marginalise women with disabilities and pour doubt and scorn on them, we are going to reuse the same letters.
A Long Covid SOS letter graphic on a pale grey background with Long Covid SOS liferings in background. A white page with shadow reads “Dear Sirs, The author of your recent opinion piece on “Disability becoming cool” seeks, ironically perhaps, attention and cachet with such a deliberately divisive article. A piece such as this, which ignores the impact of a recent mass disabling event causing widespread chronic illness and disproportionately so in women, cannot be taken seriously. The impact of repeated Covid infections and Long Covid on a national health and economic scale is measurable and has indeed been measured. The literature on the impact of Covid and Long Covid on health and wellbeing is extensive and not in question.”
The Long Covid SOS logo appears at the top right.

A Long Covid SOS letter graphic on a pale grey background with Long Covid SOS liferings in background. A white page with shadow reads “These are disabling biomedical diseases with comorbidities including proven links to the symptoms she inexplicably describes as everyday and normal. The cherry-picked anecdotes and quotes are indefensible when considered against actual scientific evidence. We prefer not to give oxygen to the unevidenced musings of individuals who seek to divide. But unlike the author, we can't and won't ignore the elephant in the room. Yours, Long Covid SOS, registered charity 1199120”Alt text: A Long Covid SOS letter graphic on a pale grey background with Long Covid SOS liferings in background. A white page with shadow reads “Dear Sirs, The author of your recent opinion piece on “Disability becoming cool” seeks, ironically perhaps, attention and cachet with such a deliberately divisive article. A piece such as this, which ignores the impact of a recent mass disabling event causing widespread chronic illness and disproportionately so in women, cannot be taken seriously. The impact of repeated Covid infections and Long Covid on a national health and economic scale is measurable and has indeed been measured. The literature on the impact of Covid and Long Covid on health and wellbeing is extensive and not in question.”
The Long Covid SOS logo appears at the top right.

A Long Covid SOS letter graphic on a pale grey background with Long Covid SOS liferings in background. A white page with shadow reads “These are disabling biomedical diseases with comorbidities including proven links to the symptoms she inexplicably describes as everyday and normal. The cherry-picked anecdotes and quotes are indefensible when considered against actual scientific evidence. We prefer not to give oxygen to the unevidenced musings of individuals who seek to divide. But unlike the author, we can't and won't ignore the elephant in the room. Yours, Long Covid SOS, registered charity 1199120”
23311
Reposted by Long Covid SOS
Putrino Lab @putrinolab.bsky.social · 27/08/2026
On the road to Amsterdam to present some of my team's latest research about #LongCOVID at @ISLCPAIS. Very excited to connect with colleagues and share ideas. I've been busy and not on here much, but I see that there has been controversy regarding the use of the phrase 1/
410822
Long Covid SOS @longcovidsos.bsky.social · 25/08/2026
This is important. France’s national health insurance body, Assurance Maladie, has updated its information on #ME/CFS, stating the condition should not be considered a psychological disorder. archive.ph/2026.08.25-1...
archive.ph
183
Long Covid SOS @longcovidsos.bsky.social · 24/08/2026
We have written to the new Secretary of State for Health and Social Care, Yvette Cooper, congratulating her on her new role & urging the government to recognise #LongCovid as an ongoing public health challenge & to take action for the millions of people affected www.longcovidsos.org/post/an-open...
longcovidsos.org
An open letter to Yvette Cooper -Secretary of State for Health and Social Care
We have written to the new Secretary of State for Health and Social Care, Yvette Cooper, congratulating her on her new role and urging the government to recognise Long Covid as an ongoing public health challenge and to take action for the millions of people affected.
0116
Reposted by Long Covid SOS
BuDS Disability Service @buds-disability.bsky.social · 21/08/2026
Covid infection levels in England continue to rise, according to the latest data, and we have once again upgraded our advice about the precautions that are appropriate in different places in response to the greater infection risk. A thread 🧵 buds.org.uk/covid-19-ris...
buds.org.uk
Covid-19 Risk Assessment: Week Ending 16 August 2026
The BuDS Covid-19 Risk Assessment for the week ending 16 August 2026
11211
Long Covid SOS @longcovidsos.bsky.social · 21/08/2026
www.longcovidsos.org/post/recogni... We’re making a change: replacing our 3rd R from Rehab to Rights to reflect what we now understand about the illness & what people living with it need. Our rights cannot depend on our ability to recover & we continue to fight for everyone with #LongCovid
longcovidsos.org
Recognition. Research. Rights.
At Long Covid SOS, we are making an important change: replacing our third R from Rehabilitation to Rights.
2147
Long Covid SOS @longcovidsos.bsky.social · 19/08/2026
Darren Parkinson is a fantastic advocate for #LongCovid His life has been "devastated" by the after effects of Covid and is urging the new PM to do more to help people living with the condition 🙏 He caught #Covid in 2021 and now struggles to leave his home. www.bbc.co.uk/news/article...
bbc.co.uk
Bradford man with long Covid asks PM to do more for sufferers
Darren Parkinson says the after-effects of the virus have "devastated" his life.
2188
Reposted by Long Covid SOS
Scott Hugo @scotthugo.bsky.social · 19/08/2026
🌎 Our movement demanding responsible, ethical, and compassionate reporting on chronic conditions is going global. Thank you so much for your solidarity @longcovidsos.bsky.social ! 🇺🇸🇬🇧
032
Reposted by Long Covid SOS
ME/CFS San Diego @mecfssd.bsky.social · 18/08/2026
Ethics Complaint Against @wired.com Update: @longcovidsos.bsky.social formally endorses the patient-led complaint, joining 25+ advocates and @meactnet.bsky.social in calling for ethical, evidence-based reporting on ME/CFS/LC. www.meaction.net/2026/08/18/p...
meaction.net
141
Long Covid SOS @longcovidsos.bsky.social · 19/08/2026
We’re proud to endorse this Patient-Led Journalism Ethics Complaint Against WIRED, joining ME Action and 25+ advocates, in calling for ethical, evidence-based reporting on #LongCovid, #ME and other #postinfectiousillnesses www.longcovidsos.org/post/uk-orga...
longcovidsos.org
UK Organization Long Covid SOS Endorses Patient-Led Journalism Ethics Complaint Against WIRED
Transatlantic partnership underscores the growing and global movement demanding responsible, ethical reporting on chronic conditions like Long COVID and ME.
41912
Reposted by Long Covid SOS
Tom Kindlon @tomkindlon.bsky.social · 08/08/2026
I thought this summary post on this study was interesting "Baroreflex sensitivity impairment in Long-COVID patients: a diagnostic tool for classifying the autonomic dysfunction spectrum" lnkd.in/p/dFAbtb2T Wonder whether the same findings would be found in ME/CFS? #LongCovid #MEcfs
Dr Selina Shaw

  • 1st

Medical Doctor.  Long Covid & Complex Chronic Conditions  General Practitioner NHS 

2d • 


I really liked this paper because it reflects what so many of us are seeing clinically.

The authors found that people with Long COVID had impaired baroreflex sensitivity—the body's ability to rapidly adjust heart rate and blood pressure in response to changes in posture. 

Importantly, these abnormalities were present across a spectrum of autonomic dysfunction and were not limited to patients who met the classic diagnostic criteria for POTS. Their findings suggest that baroreflex sensitivity could become an objective way to identify and classify different patterns of autonomic dysfunction in Long COVID.

Many people with Long COVID have clear evidence of autonomic dysfunction, particularly related to standing, maintaining blood pressure, controlling heart rate during movement, and coping with heat exposure. 

Yet many do not meet the diagnostic criteria for POTS, leaving them without a clear explanation for their symptoms despite experiencing significant disability. This group tends to be neglected by the current system if they do not get an official “label”, when in reality their quality of life may be significantly improved with appropriate treatment. 

The authors propose that persistent brainstem inflammation in Long COVID may disrupt the neural activity of central autonomic centres. This is a hypothesis that I largely agree with and one that could explain the broad spectrum of orthostatic symptoms we see in practice.

I hope studies like this pave the way for better ways of measuring autonomic function beyond our current diagnostic criteria. There may be a large group of patients with clinically significant autonomic dysfunction who are currently being overlooked because they don't fit neatly into existing diagnostic categories. 

We need to adapt to the idea that the dysautonomia patterns seen in Long COVID may be different from previously def…
2288
Reposted by Long Covid SOS
Tessa Munt MP 🔶 @tessamunt.bsky.social · 08/08/2026
Thanks to everyone who contributed to such a powerful account. @andyburnham.bsky.social spoke of govt investing in people’s success rather than paying for failure. A year on from #DecodeME results it’s time for serious investment in the research to address the cost to us all of #SevereME. #MECFS
02513
Long Covid SOS @longcovidsos.bsky.social · 08/08/2026
Today we sent a letter to The Times in response to a recent opinion piece about “social contagion”, young women and disability. Our letter may not be published, so we wanted to share it with you.
A grey muted gradient background decorated with Long Covid SOS liferings 
Text reads “Dear Sirs,
The author of your recent opinion piece on “Social contagion” seeks, ironically perhaps, attention with such a deliberately divisive article. The inelegant attempt to construct an elephant trap for critics unfortunately fails, when, to quote Kay Ryan, “The room is almost all elephant.”
Long Covid SOS logo top right A grey muted gradient background decorated with Long Covid SOS liferings 
Text reads “A piece such as this, which ignores the impact of a recent mass disabling event causing widespread chronic illness and disproportionately so in women, cannot be taken seriously. The impact of repeated Covid infections and Long Covid on a national health and economic scale is measurable and has indeed been measured. The literature on the impact of Covid and Long Covid on health and wellbeing is extensive and not in question.”
A grey muted gradient background decorated with Long Covid SOS liferings 
Text reads “These are disabling biomedical diseases with comorbidities including proven links to the medical conditions she inexplicably describes as everyday and normal with a soupçon of added anxiety. We prefer not to give oxygen to the unevidenced musings of individuals who seek to divide. But unlike the author, we can’t and won’t ignore the elephant in the room.
Yours,
Long Covid SOS”
76925
Long Covid SOS @longcovidsos.bsky.social · 07/08/2026
Pleased to see increased awareness of #PoTS. However, it’s disappointing that the article doesn’t acknowledge #COVID-19 can be a major trigger. While PoTS has many causes other than #LongCovdid this is important for awareness, diagnosis, research & prevention. www.bbc.co.uk/news/article...
bbc.co.uk
'Eating and standing are a challenge in the heat'
K-Jo, from Didcot, says hot weather worsens her health condition, leaving her tired and isolated.
0144
Reposted by Long Covid SOS
Prof Christina Pagel @chrischirp.bsky.social · 31/07/2026
🧵On @thenewsagents.co.uk yesterday, school closures and the lab leak theory were offered as two examples of legitimate questions that were hard to ask. Both have in fact been asked constantly since 2020. But here's a thread on why I think they were wrong and dangerous on school closures 1/12
571603661
Reposted by Long Covid SOS
Mark Faghy @profmarkfaghy.bsky.social · 30/07/2026
📢 Participants needed for Long COVID research I'm helping an MSc student recruit adults living with Long COVID for an important study exploring experiences of rehabilitation and recovery. 🔗 app.onlinesurveys.jisc.ac.uk/s/lboro/long...
app.onlinesurveys.jisc.ac.uk
Factors Influencing Experiences of Rehabilitation Among Adults with Long COVID: An Explanatory Sequential Mixed-Methods Study - Online Surveys | Online surveys
Online surveys is a powerful, easy to use tool for creating online surveys. Run by Jisc, Online surveys is used by over 300 different organisations in the UK...
22418
Long Covid SOS @longcovidsos.bsky.social · 30/07/2026
Our Chair Sarah Barley-McMullen was invited to discuss her experiences with Healthcare on the podcast ‘Leading Improvement in Health and Care: What does NHS England's Quality Strategy mean in practice?’ Read more and 🔗 to listen to the podcast here: www.longcovidsos.org/post/leading... #LongCovid
Graphic from Long Covid SOS with a dark purple background and colourful starburst shapes in pink, turquoise, peach and lavender across the top. Large white text reads: “People’s experience of care shapes whether they feel safe enough to seek help in the first place.”
Below the quote, the attribution reads: “– Sarah Barley-McMullen, Chair of Long Covid SOS.” A thin white horizontal line separates the quote from the Long Covid SOS logo at the bottom.
051
Long Covid SOS @longcovidsos.bsky.social · 29/07/2026
www.nature.com/articles/s41... Researchers compared people living with #LongCovid and #ME/CFS to healthy volunteers after 60 days of strict bed rest Thank you to everyone working to uncover the biology of #postviralillnesses and help ensure these complex diseases are recognised and understood
nature.com
Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest - Nature Communications
Low aerobic capacity in patients with long COVID and ME/CFS is often attributed to physical inactivity. The authors show that long COVID and ME/CFS patients have distinct skeletal muscle changes that ...
1116
Long Covid SOS @longcovidsos.bsky.social · 25/07/2026
23rd July, the iPaper published an article on #ME/CFS and #LongCovid titled “75 people claim to be cured of chronic fatigue and long Covid. Here’s how” Read our statement on it at www.longcovidsos.org/post/our-pos...
longcovidsos.org
Our position on the iPaper article
Yesterday, 23rd July, the iPaper published an article on ME/CFS and Long Covid titled "75 people claim to be cured of chronic fatigue and long Covid. Here's how"
01610
Long Covid SOS @longcovidsos.bsky.social · 13/07/2026
www.camh.ca/en/camh-news... Interesting new #LongCovid research has identified measurable changes in the brain’s dopamine system PET imaging found lower dopamine markers associated with fatigue & cognitive issues A small, early study but more evidence of measurable biological changes in Long Covid
camh.ca
New Study Provides First Evidence of Dopamine System Injury in the Brain of Long COVID Patients
Findings have important implications for the pathophysiology of key COVID symptoms and suggest new potential avenues for treatment
096
Long Covid SOS @longcovidsos.bsky.social · 08/07/2026
Please join us in giving Dr Melissa Heightman a very warm welcome as our new Trustee. Dr Heightman is a Consultant Physician and Clinical Lead for the Post Infection Condition and Post Covid Service at UCLH where she leads the care of people living with #LongCovid and post-viral illness.
Graphic from Long Covid SOS announcing the appointment of Dr Melissa Heightman to the Long Covid SOS Board of Trustees. The design features the Long Covid SOS logo at the top, followed by the text: “We’re absolutely delighted to welcome Dr Melissa Heightman to the Long Covid SOS Board of Trustees.” Below is a smiling head-and-shoulders photograph of Dr Heightman with long blonde hair, standing in front of a conference display featuring the British Thoracic Society logo. The background is light grey with subtle lifering elements from the Long Covid SOS branding.
2162
Reposted by Long Covid SOS
Long COVID Physio @longcovidphysio.bsky.social · 24/05/2026
Heute veröffentlicht 🔔 Die vollständige Long-COVID-Videoserie auf #Deutsch @longcovidde.bsky.social @fisiocamera.bsky.social Zu den neuen Episoden gehören: ⚓️ Auswirkungen von #LongCOVID auf den Alltag 👷‍♀️ Sichere Long-COVID-Rehabilitation ⚖️ #Pacing 🏃‍♂️ Bewegung longcovid.physio/german-long-...
longcovid.physio
Long COVID Videoserie (German) — Long COVID Physio
Long COVID Physio hat sich mit FisioCamera zusammengetan, um eine Reihe von Lehrvideos über Long COVID bereitzustellen
1159
Reposted by Long Covid SOS
Sazana Jayadeva @sazanajayadeva.bsky.social · 28/05/2026
⭐Job opportunity for UK-based PhD student/recent grad⭐ @nisreenalwan.bsky.social @dalupton.bsky.social Nina Smyth & I are recruiting a Research Assistant for our project on improving healthcare support for Long Covid patients. To apply (deadline 19 June): portal.unitemps.com/Search/JobDe...
portal.unitemps.com
Unitemps
1126
Reposted by Long Covid SOS
Trish Greenhalgh @trishgreenhalgh.bsky.social · 12/05/2026
OUR NEW BMJ editorial: Andes virus should reset WHO’s default approach to airborne risk. 🧵 1/ For severe pathogens with person-to-person transmission, the starting point should be precautionary airborne protections — not waiting for definitive proof after spread occurs. www.bmj.com/content/393/...
bmj.com
16685319
Long Covid SOS @longcovidsos.bsky.social · 12/05/2026
Today is #MECFS Awareness Day. As a #LongCovid charity, we recognise that a significant proportion of #pwLC - around half, but not all - meet/would meet the diagnostic criteria for ME/CFS. We exist to advocate for everyone with Long Covid, including those who also have an ME/CFS diagnosis. 🧵
Alt text: Blue-toned awareness graphic for ME/CFS Awareness Day on 12 May 2026 by Long Covid SOS. The centre of the image features a large awareness ribbon formed from overlapping handprints in shades of blue, representing people affected by ME/CFS. Along the bottom are rows of raised hands in different blue tones above the words “Millions Missing.” The background contains faint repeated lifering logos, with the Long Covid SOS logo positioned beneath the ribbon.
12112
Long Covid SOS @longcovidsos.bsky.social · 12/05/2026
We wrote to @rcpsych.bsky.social yesterday asking them to review the platforming of psychologising models of #LongCovid contrary to the significant and growing evidence base demonstrating unequivocally that #pwLC have a biomedical condition.
082
Long Covid SOS @longcovidsos.bsky.social · 12/05/2026
Add your name and ensure that the message is amplified! #LongCovid
042
Reposted by Long Covid SOS
Long Covid Scotland @longcovidscot.bsky.social · 12/05/2026
Today on International ME Awareness Day, we’re calling for better recognition, research and services for people living with ME and Long Covid in Scotland. With £4.5m now allocated by The Scottish Government, the focus must now be on full accountability and delivering real change for patients.
072
Reposted by Long Covid SOS
The Skylark @theskylark.bsky.social · 11/05/2026
🧵
074
Reposted by Long Covid SOS
Long Covid Advocacy @longcovidadvoc.com · 12/05/2026
🩵On #MEAwarenessDay we are sending an open letter to @rcpsych.bsky.social calling for alignment with current evidence. Supported by 20 organisations. +35 advocates, clinicians & academics! In democratic spirit we are offering a public sign-on opportunity 🔗👇️ #RCPsychIC #Garner
A letter from Long Covid Advocacy to the Royal College of Psychiatrists and President Elect Prof Subodh Dave discusses integrating patient experience into ME care and highlights concerns about psychiatric-led approaches.

#mecfs #meawareness #RCPsychIC #pwMEA letter from Long Covid Advocacy to the Royal College of Psychiatrists and President Elect Prof Subodh Dave discusses integrating patient experience into ME care and highlights concerns about psychiatric-led approaches.A letter from Long Covid Advocacy to the Royal College of Psychiatrists and President Elect Prof Subodh Dave discusses integrating patient experience into ME care and highlights concerns about psychiatric-led approaches.
56638
Long Covid SOS @longcovidsos.bsky.social · 11/05/2026
#LongCovid is a serious, multi-system biomedical disease. That is why we have written to the Royal College of Psychiatrists to express concern about the continued promotion of psychologising approaches to post-viral illness. Longcovidsos.org/post/rcp-letter
Alt text: Graphic by Long Covid SOS with the headline “Long Covid is a serious, multi-system biomedical disease.” The graphic states that the charity has written to the Royal College of Psychiatrists expressing concern over the continued platforming of psychologising models without balanced biomedical representation.

The centre of the graphic contrasts “Evidence” versus conditions Long Covid has been “Dismissed As.” Under “Evidence” are: immune dysregulation, microvascular injury, autonomic dysfunction, neurological damage, and metabolic impairment. A substantial and rapidly growing body of evidence demonstrates that Long Covid is a complex, multi-system biomedical disease
Under “Dismissed As” are: anxiety and depression, deconditioning, somatisation, maladaptive beliefs, and laziness. These outdated and unsupported assumptions have caused real harm: delayed disgnosis, inadequate care, dismissal and loss of trust.

A statement at the bottom reads: “Like people with ME/CFS decades before them, people with Long Covid are still fighting to be believed. We call for scientific rigour, evidence-based care, and respect for everyone living with post-viral illness.” Long Covid SOS logo in the bottom right corner.
3259
Reposted by Long Covid SOS
Billy Hanlon @bhanlon15.bsky.social · 06/05/2026
Men's Health: 'Millions of People Live With Long COVID. This Researcher Is on a Mission to Find a Cure' 'Six years ago, Dr. Michael Peluso and his team launched a first-of-its-kind long COVID tissue bank and have been working to understand the disease ever since' www.menshealth.com/health/a7113...
menshealth.com
Millions of People Live With Long COVID. This Researcher Is on a Mission to Find a Cure.
Six years ago, Dr. Michael Peluso and his team launched a first-of-its-kind long COVID tissue bank. They’ve been working to understand the disease ever since.
05321
Long Covid SOS @longcovidsos.bsky.social · 29/04/2026
New Nature paper: Long Covid is real, complex and multi-system. Key researchers and lived experience patients in the field of #LongCovid, including our new Chair, highlight urgent need for diagnostics, treatments and more funding! Thank you to everyone involved. www.nature.com/articles/s43...
nature.com
Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID - Communications Medicine
Faghy et al., review the current literature on Long COVID pathophysiology, linking immune dysregulation, viral persistence, and vascular injury to enduring symptoms. They highlight evidence to guide f...
2229
Reposted by Long Covid SOS
Dr David Joffe MB BS(Hons), PhD, FRACP @davidjoffe64.bsky.social · 24/04/2026
I've been waiting for this paper to drop for several months 👏🏻👏🏻😎 The honour of sitting with the grown-ups is seeing the science in its raw form Now peer reviewed and published🏁 @DrMark_Faghy and Team... Bloody FANTASTIC science🏆🏆 Things that aren't "PSYCHOSOMATIC"‼️ doi.org/10.14814/phy...
doi.org
Impaired peripheral oxygen delivery during submaximal exercise in adults with long COVID
Long COVID (LC) is a multisystem condition that is linked to distinct pathologies including viral persistence, immunological dysfunction, endothelial damage, and mitochondrial dysfunction. To date, l....
415076
Long Covid SOS @longcovidsos.bsky.social · 22/04/2026
Long Covid SOS is entering a new chapter led by lived experience Sarah Barley-McMullen is our new Chair, alongside 2 new trustees, strengthening our leadership as we continue to fight for recognition, research & rights #LongCovid Too many people are still unheard, unsupported, and without answers.
A newspaper-style graphic from Long Covid SOS announcing a leadership change. The headline reads: “New Chair of Long Covid SOS places lived experience at the heart of governance.” The design includes nationwide, press release and the date 22 April 2026 Subheading: “New chapter for Long Covid charity.” 
Text explains that Sarah Barley-McMullen has been appointed Chair alongside two new trustees. A prominent quote reads: “Too many people are still unheard, unsupported, and without answers.”
2164