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Long Covid SOS

@longcovidsos.bsky.social
2.8K followers 143 following 410 posts

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

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Long Covid SOS @longcovidsos.bsky.social · 19h
We have written to the JCVI before about the evidence that vaccination reduces the risk of developing Long Covid. We’ve now written AGAIN following their advice for autumn 2027 2 million #pwlc in the UK. Yet #LongCovid isn’t mentioned in the latest advice. www.longcovidsos.org/post/respons...
longcovidsos.org
Response to the JCVI’s Autumn 2027 COVID-19 Vaccination Advice
On the 9th of October we wrote to the Joint Committee on Vaccination and Immunisation (JCVI) about their Autumn 2027 COVID-19 Vaccination Advice.
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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
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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
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Natasha Devon @natashadevon.bsky.social · 24/09/2026
George will be coming on my show this weekend to discuss this very important article.
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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...
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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
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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.
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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
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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.
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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
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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.
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Long Covid SOS @longcovidsos.bsky.social · 11/09/2026
This means so much. Thank you again
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Long Covid SOS @longcovidsos.bsky.social · 11/09/2026
Thank you for your continued support 🛟
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Long Covid SOS @longcovidsos.bsky.social · 11/09/2026
We need to keep talking about Long Covid and keep asking what is happening to the people who have disappeared from view. Take a look at our website to see how we are doing to help people with Long Covid in the conversation www.longcovidsos.org
longcovidsos.org
Long Covid SOS Charity | Recognition Research Rights
Long Covid SOS is the voice of the thousands of Long Covid sufferers in the UK. We are throwing a lifeline to all those who are living with the debilitating impact of Covid-19: Long Covid
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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”.
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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.” 
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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 :)
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Long Covid SOS @longcovidsos.bsky.social · 06/09/2026
Anyone living with #LongCovid knows we can’t afford to be complacent about COVID, even if others are. Sometimes protecting yourself means going against the norm you’re surrounded by. For #pwLC, another infection isn’t something we can simply shrug off. Longcovidsos.org
longcovidsos.org
Long Covid SOS Charity | Recognition Research Rehabilitation
Long Covid SOS is the voice of the thousands of Long Covid sufferers in the UK. We are throwing a lifeline to all those who are living with the debilitating impact of Covid-19: Long Covid
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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.
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Long Covid SOS @longcovidsos.bsky.social · 06/09/2026
We’ll focus on advocating for care for people with #LongCovid rather than division as we head into yet another Covid surge. To prevent Long Covid, avoid getting Covid. Mask, test, ventilate and stay home when unwell.
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Long Covid SOS @longcovidsos.bsky.social · 06/09/2026
Today we sent the Telegraph this reworked version of our Times letter from last month to complain about yet another awful dog-whistle attack on invisible disabilities.
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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”
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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/
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Long Covid SOS @longcovidsos.bsky.social · 25/08/2026
It’s also important to acknowledge the elephant in the room: ME/CFS existed before #Covid, but cases have increased significantly since 2020 & many people develop ME/CFS symptoms following COVID-19. #LongCovid
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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
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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.
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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
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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.
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Long Covid SOS @longcovidsos.bsky.social · 19/08/2026
Thank you @greendarrenshipley.bsky.social for continuing to speak up about #LongCovid
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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.
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Long Covid SOS @longcovidsos.bsky.social · 19/08/2026
Delighted to stand in solidarity with you all from over here! 🇬🇧 The influx of unethical reporting on #LongCovid #MECFS and other #PostInfectiousIllnesses has to be challenged and we salute you in your efforts 🫡
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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 ! 🇺🇸🇬🇧
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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
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Long Covid SOS @longcovidsos.bsky.social · 19/08/2026
Journalists have a responsibility to get the facts right, to properly represent the evidence & to make clear when something is opinion rather than established fact. That really shouldn’t be too much to ask.
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Long Covid SOS @longcovidsos.bsky.social · 19/08/2026
Fair and responsible journalism matters. Reporting on these conditions can have very real and damaging consequences, influencing how people are seen, believed and treated.
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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.
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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…
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Long Covid SOS @longcovidsos.bsky.social · 09/08/2026
All of our volunteers have Long Covid inc our social media team. We have no desire to fight with our followers or indeed anyone, anywhere. We stand with everyone with disabilities and do not believe in stigmatising people with disabilities - visible or not - or accusing them of faking it.
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Long Covid SOS @longcovidsos.bsky.social · 08/08/2026
She doesn’t mention Long Covid per se, but she does mention POTS and other conditions which many people with LC have, and which are also invisible conditions. So we have no doubt she would include LC, she just didn’t happen to name it. We had to speak out against this. Our community stands together
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Long Covid SOS @longcovidsos.bsky.social · 08/08/2026
Stock is using the exact same arguments that have been used to falsely dismiss Long Covid and prior to that, ME, (and prior to that, MS, and so on) as psychosomatic. For example: www.theguardian.com/commentisfre...
theguardian.com
Apparently just by talking about it, I’m super-spreading long Covid | George Monbiot
A professor has suggested that press coverage could make people believe they have the condition, says Guardian columnist George Monbiot
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Long Covid SOS @longcovidsos.bsky.social · 08/08/2026
Thank you!
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Long Covid SOS @longcovidsos.bsky.social · 08/08/2026
Finally re Arday- Claiming that a current public controversy in academia is related to women having disabilities is a complete non-sequitur.
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Long Covid SOS @longcovidsos.bsky.social · 08/08/2026
In the same way, claiming that there is a ‘social contagion’ of ‘fantasists’ making people ‘act’ ‘unwell’ ‘for attention’ is using a few individual opinions of other handpicked individuals to broadly stigmatise and harm people with disabilities.
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Long Covid SOS @longcovidsos.bsky.social · 08/08/2026
We see in society that the 0% fraud rate on PIP doesn’t stop certain groups & commenters stigmatising disabled people for claiming benefits and accusing them of malingering or factitious illnesses.
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Long Covid SOS @longcovidsos.bsky.social · 08/08/2026
Questioning what we see is one thing; doing so without engaging with the evidence is another. Re social media trends: in broad terms, some people on social media and other commentary sources may not be all they seem, and that’s is widely accepted.
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Long Covid SOS @longcovidsos.bsky.social · 08/08/2026
With respect and affection, our point is not about social media trends. An article cannot discuss the rising number of people currently experiencing illness and disability while ignoring the measurable biomedical reality of Covid and Long Covid.
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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
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Long Covid SOS @longcovidsos.bsky.social · 08/08/2026
Thank you!
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Long Covid SOS @longcovidsos.bsky.social · 08/08/2026
Of course. Anyone can get #LongCovid and we wish that no-one could. However, the article in question specifically targeted young women with disabilities and our letter & comment therefore addressed that targeting.
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