Six years of being ignored.
Yesterday that changed...

Four CVF members set the record straight.

Starting with @larawong.bsky.social sharing our official statement:

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RESEARCH FUNDING | Long Covid SOS Long Covid SOS call for dedicated research funding. Write to your MP using our template letter and demand investment in Long Covid research.

Template here

www.longcovidsos.org/researchfund...

Muted soft grey background with Long Covid SOS lifering logos. Long Covid SOS logo at top. Underneath the words “ONE MONTH ON… Have you had a response yet?” A white rectangle tick box with drop shadow reads “MP Response Status: with an email icon Yes in teal No in orange “ At the bottom of the page in white reads “Let’s keep the conversation going”

One month on - have you heard from your MP?

Many of you spoke up, shared your stories, and made #LongCovid harder to ignore

If you’ve had a response, share it - it may help someone else take the first step

If not, follow up. We don’t stop at one message
We will not be ignored.
#longcovidawareness

Not really if they are refusing to even look at things that will help symptom management.
We’ll have a think and hopefully get back with something constructive. If you’d like to email us with an outline of this conversation we can keep track better. info@longcovidsos.org and mention Helen

As co-authors of the leaflet, we give permission for GPs to use it. Resources from the Royal College of General Practitioners are there to support patients in primary care.

If you’re able to share a bit more about what the practice said, we may be able to help support next steps.

Well do a bit of digging around and see what to suggest.

Are they aware it’s produced in close association with the RCGP’s?

We’ve just been advised the interview starts at 2:37 and *ends* at 2:52 🫣

RESEARCH FUNDING | Long Covid SOS Long Covid SOS call for dedicated research funding. Write to your MP using our template letter and demand investment in Long Covid research.

And echoed the recent Covid Inquiry report calling for dedicated research funding for #LongCovid as a novel condition:
Longcovidsos.org/researchfunding

GP LEAFLET | Long Covid SOS In close partnership with the Clinical Post Covid Society​ we have completely revised and updated the leaflet for GPs that we co-produced with the Royal College of General Practitioners.  This leaflet...

Kim mentioned our patient and GP leaflets which can be found on our website:

www.longcovidsos.org/gp-leaflet

Laura McGhie - 21/03/2026 - BBC Sounds Laura McGhie with your calls and features through the night.

Thanks to @lauramcghie.bsky.social for inviting our friend Kim to speak about #LongCovid on BBC Radio 5 Live last night:

The interview is 15mins starting at 2:52

www.bbc.co.uk/sounds/play/...

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Congrats to Stanford’s @mathewkiang.com for this beautifully designed paper on unrecognized COVID deaths. As usual, those without access to healthcare are those who suffer unnecessary loss. @stanfordmedicine.bsky.social @stanfordeph.bsky.social #COVID #publichealth

Graphic with the heading “COVID-19 Inquiry” and subheading “Long Covid Groups Respond to Inquiry Report on Healthcare Systems,” with Long Covid Support logo.

Text slide stating: “Today’s Module 3 report confirms that there were widespread failures in healthcare and an inadequate response to Long Covid across all four UK nations.”

Slide titled “What did the report say?” followed by bullet points outlining findings: healthcare systems were unprepared for long-term post-viral conditions; most Long Covid patients could not access treatment; GPs lacked support to diagnose or manage the condition; many healthcare workers were exposed to risk, leading to loss of lives and livelihoods.

Quote slide featuring statement: “The Inquiry’s findings lay bare how badly people with Long Covid were let down during the early pandemic. Six years on, many still cannot access diagnosis, treatment and support. We must now build a healthcare system that properly responds to this condition.” Attributed to Nigel Rothband, Chair of Long Covid Support.

Today’s Covid-19 Inquiry Module 3 report laid bare serious failures in healthcare and in the response to Long Covid.

#LongCovid #CovidInquiry

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Long Covid Groups call for Urgent Action as Inquiry Report Confirms Widespread and Ongoing Healthcare Failings | Press Release | March 2026 Long Covid groups are now calling on the Government and devolved administrations to urgently address the ongoing failures in care. They warn that Long Covid remains a significant public health challen...

The Long Covid group are now calling on the Government and devolved administrations to urgently address the ongoing failures in care.
#LongCovid remains a significant public health challenge, affecting millions today with new cases emerging with each new wave.
www.longcovidkids.org/post/long-co...

The Long Covid groups call on policymakers to ensure the findings of the report are implemented and result in meaningful change for people with #LongCovid

@longcovidphysio.bsky.social @longcovidsupport.bsky.social @longcovidkids.bsky.social

RESEARCH FUNDING | Long Covid SOS Long Covid SOS call for dedicated research funding. Write to your MP using our template letter and demand investment in Long Covid research.

We particularly emphasise the Inquiry’s finding that ringfenced Long Covid research funding stopped in 2021. We continue to call for dedicated research funding for LC:

Longcovidsos.org/researchfunding

The report makes recommendations we believe are priorities:
- Improved ventilation in healthcare settings
- expanding the use of multidisciplinary LC clinics
-future pandemic planning to include long term health effects

The LC groups are now calling on the Government and devolved administrations to urgently address the ongoing failures in care. They warn that Long Covid remains a significant public health challenge, affecting millions today with new cases emerging with each new wave.

The report’s findings provide important validation for the experiences of the millions of people living with Long Covid.

However, many of the systemic issues identified in the report from the early years of the pandemic remain unresolved six years on.

Long Covid groups call for urgent action as Inquiry report confirms widespread and ongoing healthcare failings Long Covid advocacy groups today responded to the UK Covid-19 Inquiry’s Module 3 report on healthcare systems, saying its findings provide important validation for the experiences of the millions of p...

Today the #LongCovid groups call for urgent action in response to the #CovidInquiry Module 3: Healthcare report which confirms widespread and ongoing failings.

Longcovidsos.org/post/covidinquiryhealthcarepr

Today, alongside Long Covid Kids, Long Covid SOS and Long Covid Physio, we release our demands ahead of the release of the UK Covid-19 Inquiry report on Module 3 (due on Thursday 19 March).

Read the press release on our website: www.longcovid.org/impact/news/...

#CovidInquiry #LongCovid

LongCovid Physio, together with LongCovid Kids, LongCovid SOS and LongCovid Support were core participants in Module 3 of the Covid Inquiry

The report will be released on Thursday 19th March

Please see our press release ahead of this day

Thanks to LCS for posting 🙏

🗓️ En cette fin de Journée internationale de sensibilisation au #CovidLong

Nous souhaitons d’abord remercier toutes les personnes qui ont participé aujourd’hui.

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

Together, we can amplify the call for answers, care, and research for #LongCovid.

Longcovidsos.org/researchfunding

#longcovid #longcovidawarenessday #everyheartbeatcounts

Graphic in muted greys from dark to light with 2 Long Covid SOS liferings faint in the background. A bold send icon in teal and a Long Covid SOS logo. Underneath text in dark green reads “Already written to your MP?Share your story or screenshot to inspire others to act.Together, we amplify our voices”

Have you already written to your MP?

Share your story or a screenshot of your message and tag us to inspire others to take action.

When people see others speaking up, it helps them find the confidence to do the same.

Together, our voices are louder.

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GP LEAFLET | Long Covid SOS In close partnership with the Clinical Post Covid Society​ we have completely revised and updated the leaflet for GPs that we co-produced with the Royal College of General Practitioners.  This leaflet...

You can find our leaflets on our website:

longcovidsos.org/gp-leaflet

longcovidsos.org/patient-leaflet

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

Millions of people are still waiting for answers, treatments and a path to recovery. Progress depends on sustained research.

Fund Long Covid research for the answers.

Longcovidsos.org/research

#longcovidawareness #fundlongcovidresearch
#everyheartbeatcounts

Thank you so much to Rebecca for taking the time to record this video. Her message helps people living with Long Covid feel heard and seen, while raising awareness of the lasting impact a Covid infection can have.