Regarding below - Looks like there’s speculation on the cyber bullying claim 😬, see comments below my posts. I’m going to leave the post up, as the comments are really helpful, but I guess we have to await further updates before we know what has really happened.
#pwME #pwLC
We are very sorry but due to incessant cyberbullying Dr Taylor is no longer working at Jura health. We are aware of a few ex-patients who are spreading misinformation about the service. Due to the intensity of the harassment, Dr Taylor has not been able to run a service normally for the past 6 weeks. As Dr Taylor was given no notice of the clinic closing, she does need some time to wrap everything up. Therefore, if you are waiting on a report, please do not listen to anyone online who says you will not get one. No-one will be left without a letter. Dr Taylor cares deeply about her patients and would not leave them without everything they are due. Additionally, anyone who has paid for an appointment will of course be given a refund. This is not the case and just another way of targeting Dr Taylor. We are still answering emails- please be patient with us as there are only 2 of us and lots of patients worried about their ongoing care. We are also calling patients, but again it will take time to do this. Dr Taylor has dedicated her career to helping patients unseen by a system that does not understand their disease. Please remember the Dr Taylor that you know and not the fictional one being described online. She would never desert her patients. It has been devastating for her to watch a few people destroy a service that has helped so many. Most upsetting is that Dr Taylor cannot prescribe medication without a clinic. She would have avoided this situation if at all possible, and is aware that many people rely on the medication she prescribes. She has absolutely no control over this. She can only suggest asking your GP or another private doctor if they are willing to prescribe your medication. Contrary to what is being said, Police Scotland are involved due to threats made to Dr Taylor, the host clinic and the sheer scale of the harassment. The same people who claim what they are doing is free speech are deleting any positive comments made about Dr Taylor. That alone spea…
Current post on @drclairetaylor.bsky.social website.
#pwME #pwLC
Person First Language is vital
We are patients at the clinic - and only at the clinic
We are people living our lives with ME and LC. We have illnesses and disabilities
#pwME #pwLC
#longcovidawareness #longcovid #longcovidawarenessmonth #fblc #pwlc #pwme #mecfs #pais #pem #iacc #covidisnotover #pandemic #sarscov2 #infection #cleanair #indoorair #healtyindoorair #covid
Shocked to hear news about the DHSC intention to stall #ME health service once again (did it ever start?)
Provision of healthcare for people with severe ME to be 'considered' after 2027, earliest 😥
@sharonhodgsonmp.bsky.social
#pwME
#pwLC
Please support justice for people with ME:
justice4me.uk
Prevalence of Post-COVID Symptoms Across Variants of Concern and Follow-up Periods: A Systematic Review and Meta-Analysis — Eiron John Lugtu et al "Although the overall prevalence of post-COVID-19 condition was higher among pre-Omicron infections, the condition continues to exert a sustained burden across variant lineages." "Fatigue consistently emerged as the most long-lasting post-COVID symptom, while distinct symptom patterns were noted"
Prevalence of Post-COVID Symptoms Across Variants of Concern and Follow-up Periods: A Systematic Review and Meta-Analysis
www.ijidonline.com/article/S120...
Screenshot from latest Science for ME weekly update
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome
As someone who loves Tex-Mex & Cajun food losing the ability to eat capsaicin has sucked. Tonight Spouse managed extremely tasty fajitas without anything that would freak out my mast cells.
Every time we find a way around my body’s issues it feels like we’ve won a bit of our life back.
#pwme
#pwlc
Our pacing guides are just a few of the many resources on a list we compiled with @openmedf.bsky.social, @batemanhornecenter.bsky.social, and @solveme.bsky.social. It includes a variety of research, support, education, and more. bit.ly/3Na4mX4
#LongCovid #LongCovidAwareness #PwME #PwLC
News Release 17-Mar-2026 Discovery of a bacterium that protects against long Covid Peer-Reviewed Publication Université catholique de Louvain FacebookXLinkedInWeChatBlueskyMessageWhatsAppEmail According to WHO, approximately 6% of the worldwide population who contract Covid-19 – some 400 million people – go on to develop a long-lasting form of the disease. These figures demonstrate that the persistent form of the disease remains a problem and is a major public health challenge. In 2021, in the midst of the Covid-19 pandemic, University of Louvain (UCLouvain, Belgium) and its hospital, the Cliniques universitaires Saint-Luc, launched a large-scale study to determine whether it is possible to predict, during the acute phase of infection, the development of long-term symptoms. The ultimate goal is to better understand the underlying mechanisms and, potentially, develop a preventive therapeutic solution. After five years of research, scientists have discovered the key role played by a bacterium, Dolosigranulum pigrum, that is naturally present in the respiratory microbiome. When present in greater numbers, these bacteria are associated with a reduction in the persistence of symptoms characteristic of long Covid.
News Release 17-Mar-2026
Discovery of a bacterium that protects against long Covid
www.eurekalert.org/news-release...
Full paper (open access)
journals.asm.org/doi/10.1128/...
#COVID19 #LongCovid #COVID #PASC #PwLC #postcovid #postcovid19
![Impaired VLCFA-peroxisome-mediated intestinal epithelial repair causes gastrointestinal sequelae of long COVID — Man Wang et al
"findings support a model in which spike disrupts VLCFA metabolism by binding key lipid metabolic regulators and sequestering [linoleic acid], thereby suppressing PPAR-peroxisome signaling, impairing [enterocyte] differentiation and epithelial regeneration, and contributing to persistent GI symptoms."](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreia4xhjgruzqpmliqhtfb6ralw47nplsr2lbrvik3zcr2vnvphx3ve)
Impaired VLCFA-peroxisome-mediated intestinal epithelial repair causes gastrointestinal sequelae of long COVID — Man Wang et al "findings support a model in which spike disrupts VLCFA metabolism by binding key lipid metabolic regulators and sequestering [linoleic acid], thereby suppressing PPAR-peroxisome signaling, impairing [enterocyte] differentiation and epithelial regeneration, and contributing to persistent GI symptoms."
From China
Impaired VLCFA-peroxisome-mediated intestinal epithelial repair causes gastrointestinal sequelae of long COVID
www.cell.com/developmenta...
Screenshot from latest Science for ME weekly update
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome
Persistent SARS-CoV-2 Spike is Associated with Localized Immune Dysregulation in Long COVID Gut Biopsies — Salim Abraham Soria et al "We confirmed the persistence of SARS-CoV-2 Spike transcript and protein in the gut tissue of all LC cases and controls tested." "comparison of Spike-positive regions in LC versus healthy control colon tissues revealed a differential, symptomatic state-associated signature, with 57 differentially expressed genes"
From the US
Persistent SARS-CoV-2 Spike is Associated with Localized Immune Dysregulation in Long COVID Gut Biopsies
www.biorxiv.org/content/10.6...
Screenshot from latest Science for ME weekly update
#LongCovid #PASC #PwLC #postcovid #postcovid19
USA - RECOVER Initiative (NIH) Honoring the many lived experiences with Long COVID The article starts with a mention of International Long COVID Awareness Day, March 15. It then lists some of the ways that Long Covid patients have "contributed their time, perspectives, and health information" to the RECOVER initiative research.
RECOVER Initiative (NIH): Honoring the many lived experiences with Long COVID
recovercovid.org/news/honorin...
Screenshot from latest Science for ME weekly update
#LongCovid #PASC #PwLC #postcovid #postcovid19
2 years of intermittent chronic spontaneous urticaria
6mos with almost daily outbreaks
2 months into Xolair, and the hives are gone
If this holds through next month, it'll knock (at least) 56 pills out of my weekly regimen
If they'd listened when it started, imagine where I'd be now. #pwLC
I mean...it's not nothin'.
Pretty near, though. 😒
#pwLC
Association of symptoms of neuropsychological long COVID with imaging and plasma biomarkers — Taizen Nakase et al. "In our study, imbalanced activity of the occipital lobe between the right and left hemispheres was associated with cognitive dysfunction. Reduced activity in the right parietal lobe is correlated with psychological symptoms."
From Japan
Association of symptoms of neuropsychological long COVID with imaging and plasma biomarkers
www.jns-journal.com/article/S002...
Screenshot from Science for ME weekly update
#LongCovid #PASC #PwLC #postcovid #postcovid19 #COVIDBrain #NeuroPASC
Lots of great resources gathered here!
Our Pacing and Management Guides have been helpful! We have our original pacing guide, the pediatric pacing guide (with @longcovidfam.bsky.social) and clinician pacing guide (with @patientled.bsky.social).
+ Support resources for #pwME #pwLC & caregivers.
Our latest News in Brief summary has headlines and links to further reading for ME/CFS, Long Covid, and related news for the week of Mar. 9 - 15:
Topics:
News, advocacy and articles
Coming events
Research news and commentary
Published research […]
#longcovidawarenessmonth #longcovidawareness #pais #bioscience #globalhealth #planetaryhealth #longcovid #pwlc #pwme #fblc #covidisnotover #pandemic #sarscov2 #disability #iacc
On #LongCovidAwarenessDay 2026, we hear from the healthcare professionals supporting #pwLC every day
Rebecca Livingston is a respiratory physiotherapist working with people living with #LongCovid. In her work, she sees first-hand the realities of our condition & the impact it has on people’s lives.
That’s great! We’re big fans of @longcovidphysio.bsky.social and their amazing work and resources for #pwLC too 💪👏
‘What Do People With Long Covid Want From Healthcare Services?’ A Qualitative Exploration From Lived Experience — Clare Rayner et al. "Patients emphasised the importance of being heard and the value of receiving timely care that reflects the latest scientific understanding and recognises their condition as real, treatable and deserving of ongoing clinical attention."
From the UK
‘What Do People With Long Covid Want From Healthcare Services?’ A Qualitative Exploration From Lived Experience
onlinelibrary.wiley.com/doi/10.1111/...
Screenshot from Science for ME weekly update
#LongCovid #PASC #PwLC #postcovid #postcovid19
#longcovidawareness #longcovid #longcovidheartbeats #longcovidswarenessmonth #pwme #pwlc #fblc #pais #postinfection
March is Long COVID Awareness Month Long COVID Awareness Month logo Long COVID Awareness Month is a time for everyone impacted by Long COVID to come together globally in coordinated awareness and action. This effort will highlight the urgent need for prevention, research, funding, and long-term care for people suffering with Long COVID. Hundreds of millions worldwide continue to be infected with SARS-CoV-2, and many are still developing Long COVID. The World Health Organization estimates 10–20% of those infected experience prolonged symptoms. COVID-19 Longhauler Advocacy Project (C19LAP) has created a calendar of events to particpate, with many activities you can do from home.
March is Long COVID Awareness Month
Links:
www.longhauler-advocacy.org
www.longhauler-advocacy.org/lcamonth2026
Screenshot from Massachusetts ME/CFS & FM Association March 2026 Newsletter
massmecfs.org/resources/ne...
#LongCovid #PASC #PwLC #postcovid #postcovid19 @c19lap.bsky.social
Genome-wide DNA methylation profiling in COVID-19 positive patients reveals alterations in pathways linked to neurological dysfunction — Zameer et al. "Our study shows that SARS-CoV-2 infection is associated with widespread, severity-specific epigenetic changes in peripheral blood, with minimal overlap in differentially methylated regions and genes among mild, moderate, and severe cases."
From USA
Genome-wide DNA methylation profiling in COVID-19 positive patients reveals alterations in pathways linked to neurological dysfunction
link.springer.com/article/10.1...
Screenshot from Science for ME weekly update
#LongCovid #NeuroPASC #PASC #PwLC #postcovid #postcovid19
10 March 2026 Chronic fatigue over chronic fatigue reform 4 minute read Chronic Disease Political By Euan Kielly A parliament hearing has heard from ME/CFS advocates on where and how healthcare needs to step up to address the under-recognised field. Long covid was the focus for lawmakers, clinicians, researchers and people with lived experience at today’s annual parliamentary friends of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) gathering.
(Australia)
"Long covid was the focus for lawmakers, clinicians, researchers and people with lived experience at today’s annual parliamentary friends of ME/CFS gathering."
www.medicalrepublic.com.au/chronic-fati...
Sympathetic article
#LongCovid #PASC #PwLC #postcovid #postcovid19 #auscovid19
Plasma proteomic profile reveals persistent immune activation in post-acute sequelae of SARS-CoV-2 infection — Fineschi et al. "our extended proteomic analysis shows that key proinflammatory cytokines characterizing the acute phase of SARS-CoV-2 infection remain dysregulated in individuals with PASC, even long after the initial infection." "This persistent immune perturbation suggests a failure of proper immune resolution that may not require detectable viral persistence in plasma"
From Sweden
Plasma proteomic profile reveals persistent immune activation in post-acute sequelae of SARS-CoV-2 infection
www.frontiersin.org/journals/imm...
Screenshot from Science for ME weekly update
#LongCovid #PASC #PwLC #postcovid #postcovid19
Post COVID-19 condition is associated with altered regional cerebral blood volume as revealed by dynamic susceptibility contrast MRI — MacIntosh et al. "The findings revealed a pattern of lower rCBV in the PCC group relative to controls in ROIs that have previously been reported in analogous structural and perfusion neuroimaging studies."
From Canada:
Post COVID-19 condition is associated with altered regional cerebral blood volume as revealed by dynamic susceptibility contrast MRI
www.frontiersin.org/journals/neu...
Screenshot from Science for ME weekly update
#LongCovid #NeuroPASC #COVIDBrain #PASC #PwLC #postcovid #postcovid19
Graphic with the outline of a person with one hand up (volunteering). Text: Social Media volunteers wanted! Spread the word! We have two important social media volunteer needs! - Moderators for groups- helps provide safe online spaces - Social Media Working Group - works on outward communications Apply at meaction.net/volunteer
Social media volunteers wanted! Apply here: https://www.meaction.net/volunteer
1. Moderators for our online support groups
OR
2. Join our social media working group.
We are incredibly grateful to our volunteers and for all the ways you step in to care for and grow this community!
#pwME #pwLC
