LightNews LightNews
cristinamiro7.bsky.social
@cristinamiro7.bsky.social
5 followers 8 following 10 posts
Posts Replies Media Videos
Reposted
tomkindlon.bsky.social
2/

"The major outcome of our analysis is the lack of significant differences in AAb levels between ME/CFS patients and controls"

"we found elevated reactivity against specific EBV and HSV1 surface antigens"

#MEcfs #CFS #PwME
March 23, 2025 at 1:56 PM
Reposted
tomkindlon.bsky.social
Dysregulation of lipid metabolism, energy production, and oxidative stress in myalgic encephalomyelitis/chronic fatigue syndrome, Gulf War Syndrome and fibromyalgia

From the latest Science for ME weekly update

#MEcfs #Fibromyalgia
Frontiers in Neuroscience Dysregulation of lipid metabolism, energy production, and oxidative stress in myalgic encephalomyelitis/chronic fatigue syndrome, Gulf War Syndrome and fibromyalgia — Davis et al. "These results suggest a metabolic shift in ME/CFS patients from a hypometabolic state at baseline, characterized by down-regulated pathways to a hypermetabolic state post-exercise, characterized by over-activated pathways." "energy production pathways may fail to respond efficiently to physical exertion, potentially driving exacerbation of symptoms seen in PEM."
March 18, 2025 at 2:08 AM
Reposted
tomkindlon.bsky.social
Solve ME @solveme.bsky.social announced the release of a new community developed resource guide for Infection-Associated Chronic Conditions (for example, Long Covid, ME/CFS, POTS, and other chronic conditions).

solvecfs.org/the-infectio...

solvecfs.org/wp-content/u...

#MEcfs #LongCovid
The Infection-Associated Chronic Conditions Initiative’s (IACCI) Community Resource Guide is Now Available - Solve ME/CFS Initiative
In 2023, the Long COVID Alliance (co-founded by Solve M.E.) established a new Infection Associated Chronic Conditions Patient Advocacy Coalition (IACC PAC). The Coalition has now produced the Infectio...
solvecfs.org
March 10, 2025 at 2:42 AM
Reposted
lizstokoe.bsky.social
"Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic never happened."

#Covid

www.theguardian.com/society/2025...
‘We’re losing decades of our life to this illness’: long Covid patients on the fear of being forgotten
Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic neve...
www.theguardian.com
March 2, 2025 at 7:07 PM
Reposted
tomkindlon.bsky.social
Re-visiting professional ethics in psychotherapy: reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis/chronic fatigue syndrome and ‘medically unexplained symptoms’
jme.bmj.com/content/earl...

Image is from AMMES March 2025 e-newsletter

#MEcfs #MUS
Photo of Sigmund Freud Re-visiting professional ethics in psychotherapy: reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis/chronic fatigue syndrome and ‘medically unexplained symptoms’ "Following years of debate over the effectiveness of cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), public health bodies in the UK and beyond have determined that no psychotherapy is clinically proven for this patient group. In the field of ME/CFS and the wider arena of ‘medically unexplained symptoms’ (MUS), patient survey data and qualitative research capturing patient experiences and psychotherapist attitudes suggest that therapeutic practice may sometimes fall short of required ethical standards. This raises questions about how psychotherapists can safely support, as opposed to treat, people with these debilitating conditions." Read more here
March 8, 2025 at 2:29 AM
Reposted
postviraltrials.bsky.social
Six rounds of therapeutic plasma change fail to show efficacy in treating Long Covid in a RCT in Spain www.nature.com/articles/s41...
Plasma exchange therapy for the post COVID-19 condition: a phase II, double-blind, placebo-controlled, randomized trial - Nature Communications
Here, the authors report results from a clinical trial testing whether therapeutic plasma exchange (TPE) can help people with post-COVID-19 condition (PCC). While TPE had a favorable safety profile, i...
www.nature.com
February 25, 2025 at 3:55 AM
Reposted
zolascola.bsky.social
📌 One wants good heart-rate variability!
March 2, 2025 at 3:29 PM
Reposted
knitteng.bsky.social
“'We found the majority of participants with Long COVID did not experience resolution,' researchers concluded in a new Lancet Regional Health-Americas prospective study. The study assessed over 1,000 people with Long COVID over three years and found that only 2% of people had 'resolved' Long COVID."
thesicktimes.org The Sick Times @thesicktimes.org · Feb 28
😷 Here’s what’s happening this week in #LongCOVID research: bit.ly/41r3hxg

💌 Sign up for our newsletter and get updates delivered directly to your inbox every week! thesicktimes.org/newsletter/
A new preprint from Akiko Iwasaki’s lab at Yale University, David Putrino’s group at Mount Sinai, and other collaborators found distinct immunological changes in people with post-vaccine syndrome (PVS) from COVID-19 vaccines. Researchers collected blood samples from 42 people with PVS and 22 controls. They then compared the samples with blood from 134 people with Long COVID and 134 controls. The researchers found similar immune system changes in the people with Long COVID and those with PVS, such as reactivation of Epstein-Barr virus. The authors wrote that this study “helped generate hypotheses regarding the underlying pathobiology of this condition.” While the study is small and not yet peer-reviewed, it has garnered ample attention on social media, including from anti-vaccine commentators; the authors have emphasized in interviews that the vaccines are broadly safe, but that further PVS research is important to understand this potential safety issue and to help people with the syndrome. “We found the majority of participants with Long COVID did not experience resolution,” researchers concluded in a new Lancet Regional Health — Americas prospective study. The study assessed over 1,000 people with Long COVID over three years and found that only 2% of people had “resolved” Long COVID. People with the disease had worse physical and mental health, compared with those without Long COVID. “This is consistent with prior research demonstrating worse outcomes at 2-3 years among those with Long COVID,” the authors wrote. A Japanese survey study in Scientific Reports found that 19% of men hospitalized with COVID-19 experienced erectile dysfunction (ED) up to two years following their infection. The study included 609 men hospitalized in 2021. Participants in the study with ED had high breathlessness and fatigue scores, compared to those without ED. The authors suggested that ED was caused by sleep disturbances following COVID-19, as well as the mental health effects of COVID-19 and Long COVID. A past review also found that ED in men from COVID-19 could be caused by endothelial dysfunction and direct testicular damage.
February 28, 2025 at 7:45 PM
Reposted
tomkindlon.bsky.social
Scoping survey for (Australian) Clinical Practice Guidelines for myalgic encephalomyelitis / chronic fatigue syndrome

consultations.nhmrc.gov.au/clinical-pra...

People from around the world can fill in the survey

#MEcfs #CFS
NHMRC logo Menu Scoping survey for Clinical Practice Guidelines for myalgic encephalomyelitis / chronic fatigue syndrome Closes 27 Apr 2025 Opened 21 Feb 2025 Contact 1300064672 me-cfs@nhmrc.gov.au Overview
February 24, 2025 at 1:23 PM
Reposted
macala0902.bsky.social
Muchas enfermas cuando llegamos a saber ésto ya es tarde 😔
#EncefalimielitisMiálgica
#EMsfc
#MEcfs

youtu.be/wxSwYUennBA?...
Exercise Actually Makes Chronic Fatigue Syndrome Worse
YouTube video by SciShow
youtu.be
February 21, 2025 at 3:51 PM
Reposted
tomkindlon.bsky.social
Sympathetic 8-minute video on popular YouTube channel, SciShow, already has over 100,000 views in less than 24 hours.

"Exercise Actually Makes Chronic Fatigue Syndrome Worse"

www.youtube.com/watch?v=wxSw...

#MEcfs #CFS
• PEM • Cognitive Dysfunction • Lightheadeness • Extreme Fatigue 5:22/8:11 from PEM to cognitive dysfunction, Sci SHOW Exercise Actually Makes Chronic Fatigue Syndrome Worse Sei SciShow Join 8.13M subscribers Subscribe 103,368 views 20 Feb 2025 #SciShow #science #education 8K Share ...
February 21, 2025 at 2:46 PM
Reposted
tomparsons.bsky.social
If I had seen something like this five years ago, I would still be mild. Safe care for pwME isn't that complex. Warning mild patients against intense exercise and GET could prevent so much suffering and deterioration.
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Feb 21
Sympathetic 8-minute video on popular YouTube channel, SciShow, already has over 100,000 views in less than 24 hours.

"Exercise Actually Makes Chronic Fatigue Syndrome Worse"

www.youtube.com/watch?v=wxSw...

#MEcfs #CFS
• PEM • Cognitive Dysfunction • Lightheadeness • Extreme Fatigue 5:22/8:11 from PEM to cognitive dysfunction, Sci SHOW Exercise Actually Makes Chronic Fatigue Syndrome Worse Sei SciShow Join 8.13M subscribers Subscribe 103,368 views 20 Feb 2025 #SciShow #science #education 8K Share ...
February 21, 2025 at 2:58 PM
Reposted
ninasteinkopf.bsky.social
Thank you, all 46, who signed this letter:
«The amended exercise therapy review continues to pose a risk to people with ME/CFS, including those with Long COVID who meet diagnostic criteria. [6] It should be withdrawn.»

virology.ws/2025/02/20/t...
Trial By Error: A Letter to Cochrane's Editor-in-Chief | Virology Blog
By David Tuller, DrPH This morning, I e-mailed the following letter to Dr Karla Soares-Weiser, Cochrane’s editor-in-chief, about the decision to abandon a p ...
virology.ws
February 20, 2025 at 7:29 PM
Reposted
tomkindlon.bsky.social
From Belgium:

Exploring Hypercoagulability in Post-COVID Syndrome (PCS): An Attempt at Unraveling the Endothelial Dysfunction

www.mdpi.com/2077-0383/14...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC
Journal of Clinical Medicine Exploring Hypercoagulability in Post-COVID Syndrome (PCS): An Attempt at Unraveling the Endothelial Dysfunction — Muys et al. "When [Thrombomodulin] was included […] thrombin generation was notably higher" "Although we could not demonstrate a higher level of vWF in all PCS patients, 12.4% did […] all besides one exhibited a VWF(Ag)/ADAMTS13 ratio ≥ 1.5 […] all these patients presented with hypoperfusion in the frontal lobes or perfusion heterogeneity on cerebral perfusion scintigraphy."
February 20, 2025 at 8:28 PM
Reposted
tomkindlon.bsky.social
From @meresearchuk.bsky.social

Artificial intelligence (AI) has been a hot topic over the past few years & has transformed many sectors. A team of Australian researchers recently published a research review analysing the potential of AI to impact ME/CFS research & healthcare
bit.ly/4hCosmG

#MEcfs
Will artificial intelligence (AI) help advance ME/CFS research? Given the complexity and heterogeneity (diverse nature) of ME/CFS, Al-driven techniques, such as machine learning (which identifies data patterns), offer promising avenues for uncovering biological mechanisms and identifying treatment targets. However, Al's effectiveness depends on the quality of the data it processes. ME/CFS research is often hindered by small sample sizes, inconsistent study designs, and differences in data Al interpretation. Many issues are likely due to inadequate research funding. INFORM. INFLUENCE. INVEST. (ME RESEARCH UK SC036942
February 20, 2025 at 6:21 PM
Reposted
tomkindlon.bsky.social
From @meresearchuk.bsky.social

New paper considering which characteristics – including self-reported “race”, are associated with receiving an ME/CFS diagnosis. Read more: tinyurl.com/y2kep4ht

#MECFS #MyalgicEncephalomyelitis
"The findings suggest racial disparities in the diagnostic process for ME/CFS" Compared with "non-White" respondents, "White" respondents were significantly more likely to have an ME/CFS diagnosis. Lisette Jones and Younger. International Journal of Environmental Research and Public Health (2025) ME RESEARCH UK INFORM. INFLUENCE. INVEST. SC036942
February 20, 2025 at 5:22 PM
Reposted
tomkindlon.bsky.social
From @meresearchuk.bsky.social

Researchers from Norway have published an article investigating the wages earned by 1,523 people with a diagnosis for “post viral fatigue syndrome" which includes "Benign Myalgic Encephalomyelitis".

Read more here: bit.ly/4gzxOhD

#MECFS #Prognosis
Wages earned and ME/CFS • The serious, complex, and often long-term nature of ME/CFS, means that the disease often impacts a person's ability to work and earn an income. Change in income might provide a rough indicator of ME/CFS severity over time. • A study from Norway considered wages earned in 1,523 people diagnosed with ME/CFS-like illness ("post viral fatigue syndrome") in 2016. • Results showed that compared with the wage category in 2015, in 2018: ↑ 5% (75) moved to a higher wage 57% (868) remained category in the same wage category 38% (581) moved to a lower wage category Categories: No wages; 1-499,999 Norwegian Kroner; or 500,000 or more Norwegian Kroner Kielland and Liu, Social Science and Humanities Open (2025) ME INFORM. INFLUENCE. INVEST. RESEARCH UK SC036942
February 20, 2025 at 5:14 PM
Reposted
batemanhornecenter.bsky.social
ME/CFS by the Numbers
1 in 4 are bed- or housebound. 85-90% remain undiagnosed. ME/CFS costs the U.S. up to $51B yearly—yet it’s still rarely understood.

This #RareDiseaseMonth, let’s push for awareness, research & change. Knowledge is power! 💙 #MECFSAwareness #ChronicIllness
February 20, 2025 at 4:29 PM
Reposted
openmedf.bsky.social
🌎 OMF's StudyME has registered over 11,600 participants across 61 countries and is currently recruiting for 13 studies, highlighting the global urgency for research in this field.

Will you help us accelerate research?
👉 Learn more and sign up today: ow.ly/iflZ50V3vwg
🤝 Empowering Research Breakthroughs: StudyME's Collaborative Journey - Open Medicine Foundation
Join StudyME, a global participant registry launched by OMF, connecting those with ME/CFS and Long COVID with researchers.
ow.ly
February 20, 2025 at 3:32 PM
Reposted
openmedf.bsky.social
🤝 Empowering Research Breakthroughs: StudyME's Collaborative Journey

OMF StudyME is a free global participant registry bridging the gap between individuals living with #MECFS, #LongCOVID and related diseases, and the researchers working tirelessly to uncover effective treatments and solutions.
The image is a graphic for StudyME, highlighting a celebration of over 11,600 sign-ups. It features a colorful and festive background with confetti and people raising their hands in celebration. The text encourages to learn about 8 Reasons to Sign Up for OMF’s StudyME Registry! The image contains four informational cards about the benefits of StudyME for ME/CFS research. Faster Research: StudyME facilitates easier recruitment of participants, speeding up publication of findings. Higher Quality Research: It helps researchers find ideal participants, leading to higher quality and more replicable findings. Increased Awareness: Annual surveys can highlight various challenges of living with ME/CFS and raise awareness. Expanded Funding: Demonstrating a patient community ready to participate helps researchers secure more funding for studies. The image features four informational cards about the advantages of StudyME for ME/CFS research. More Collaboration: StudyME encourages global collaboration among ME/CFS researchers, leading to better insights. Reduced Failure Rate: It improves sample sizes for research, reducing the likelihood of studies being dismissed due to low sample sizes. Increased Credibility: StudyME can set the standard for recruiting high-quality participants, boosting confidence among government and pharma entities to invest in ME/CFS research. Stronger Community: It bridges the gap between researchers and patients, fostering collaboration and mutual learning.
February 20, 2025 at 3:32 PM
Reposted
tomkindlon.bsky.social
From the US:

Quantitative serum proteomic analysis for biomarker discovery in post-COVID-19 postural orthostatic tachycardia syndrome (PC-POTS) patients

www.sciencedirect.com/science/arti...

Screenshot from latest Science for ME weekly update

#POTS #LongCovid
Autonomic Neuroscience Quantitative serum proteomic analysis for biomarker discovery in post-COVID-19 postural orthostatic tachycardia syndrome (PC-POTS) patients — Ryu et al. "Both the integrin signaling pathway and the blood coagulation pathway showed the best enrichment significance, followed by the cytoskeletal regulation by Rho GTPase pathway." "Out of the 31 proteins, 28 proteins (MTPN, TAGLN2, ADP-ribosylation factor 1, PDLIM1, PLEK, PPIA, CNN2, TPM4, LGALSL, TXN, SERPINA5, PFN1, PARK7, MANF, CA2, CALML3, TLN1, COTL1, CFL1, RAB7A, FLNA, TUBA4A, ILK, TREML1, RSU1, FGA, F11, and GP1BA) displayed a significant increase, while only 3 proteins (IGHG2, SFTPB, and IGHG4) were significantly decreased."
February 18, 2025 at 10:37 PM
Reposted
tomkindlon.bsky.social
“They are among the most underserved patient communities in the UK. The
sickest lie in darkened rooms, sometimes unable to move, speak or even
swallow. Those living with the most extreme forms of ME describe it as
not a life but a bare existence”
#MEcfs #PwME
roberthmcmullen.bsky.social Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · Feb 18
Comment article in The Times by @helenmorganlibdem.bsky.social

“Plan to help ME sufferers has been delayed for too long
new. Ministers must show that care and research for these neglected patients is a priority.”

www.thetimes.com/comment/colu...

Archive: archive.ph/a3iYo

Thank you, Helen.
Plan to help ME sufferers has been delayed for too long
Ministers must show that care and research for these neglected patients is a priority
www.thetimes.com
February 19, 2025 at 1:47 PM
Reposted
tomkindlon.bsky.social
🧵
"Long COVID Cure Would Make RFK, Jr. a Hero" By Susan Estrich

www.newsmax.com/estrich/long...

Includes some discussion of ME/CFS & POTS

#LongCovid #MEcfs

1/
NewsMax logo Home | Susan Estrich OPINION Long COVID Cure Would Make RFK, Jr. a Hero Long Covid
February 19, 2025 at 3:28 PM
Reposted
davetuller1.bsky.social
Some things I've read recently...U.S. government removes Long Covid info @thesicktimes.bsky.social @betsyladyzhets.bsky.social, embedding Long Covid into RECOVER initiative, Dutch CBT/GET ideologues maintain high media profile @anilvanderzee.bsky.social
virology.ws/2025/02/14/s...
Some Things I've Read Recently...in STAT, The Sick Times, Van Der Zee's Blog | Virology Blog
By David Tuller, DrPH Embedding ME/CFS in NIH's RECOVER initiative Ian Lipkin is a well-known professor of epidemiology at Columbia University and dire ...
virology.ws
February 14, 2025 at 9:05 PM
Reposted
tomkindlon.bsky.social
🧵
Unusual but sympathetic paper:

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

www.mdpi.com/1660-4601/22...

#LongCovid #MEcfs

1/
Abstract People with Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other complex chronic disorders consistently report having difficulty obtaining effective and compassionate medical care and being disbelieved, judged, gaslighted, and even dismissed by healthcare professionals. We believe that these adversarial interactions and language are more likely to arise when healthcare professionals are confronting complex chronic illnesses without proper training, diagnostic biomarkers, or FDA-approved therapies. These problematic conversations between practitioners and patients often involve specific words and phrases—termed the “never-words”—can leave patients in significant emotional distress and negatively impact the clinician–patient relationship and recovery. Seeking to prevent these destructive interactions, we review key literature on best practices for difficult clinical conversations and discuss the application of these practices for people with Long COVID, ME/CFS, dysautonomia, and other complex chronic disorders. We provide recommendations for alternative, preferred phrasing to the never-words, which can enhance therapeutic relationship and chronic illness patient care via compassionate, encouraging, and non-judgmental language.
February 14, 2025 at 6:11 PM