Elaine. D
LightNews LightNews
banner
elainemdc.bsky.social
Elaine. D
@elainemdc.bsky.social
16 followers 31 following 3 posts
Long Covid since May 2022. Chronically ill.
Likes Community, real science & research. BPS types & anti-science folk can move along.
Posts Replies Media Videos
Reposted by Elaine. D
polybiorf.bsky.social
The PolyBio-supported study on elevated plasma proteins associated with breathlessness in Long COVID was featured in an article in Technology Networks : www.technologynetworks.com/tn/news/long...
May 1, 2025 at 4:48 PM
Reposted by Elaine. D
longcovidadvoc.com
If a researcher or clinician is still invested in exercise or 'pacing up' it shows:

👉 devastating alienation from the patient experience

👉 wilful disengagement from the scientific research

👉 career, ideology & 'being right' is more important than the patient

#wrongparadigm
longcovidadvoc.com Long Covid Advocacy @longcovidadvoc.com · Apr 23
If exercise worked we'd genuinely know by now

Studies that claim success through 'small wins' - that is essentially bias - does not mean exercise is the answer

But, unfortunately, we have a research community who cannot move on from lifestyle interventions
April 24, 2025 at 10:33 AM
Reposted by Elaine. D
tomkindlon.bsky.social
"Sister of bedbound ME sufferer urges more funding"
www.bbc.com/news/article...

Sympathetic coverage of a tragic case of very severe ME.

This was new to me:
"a new tool called digiTherapix which can track and record a patient's movement in real time at home"

#SevereME #MEcfs
Register Sign In Home News Sport Business Innovation Culture Arts Travel Earth Audio Video Live Sister of bedbound ME sufferer urges more funding 11 hours ago Share Save Anna Varle BBC South West health correspondent The Barrett family A young woman wearing a blue and red sports tank top on an athletic field running with a baton in her handThe Barrett family Alice Barrett, 27, was fit and healthy until her third year of university when her condition deteriorated The sister of a woman with severe myalgic encephalomyelitis (ME) is calling on the government to adequately fund its plan to overhaul care for patients with the debilitating disease.
April 11, 2025 at 4:12 PM
Reposted by Elaine. D
daniellebeckman.bsky.social
I spoke with @newscientist.com about #BrainDrain, and why I am leaving the U.S. after 8 years.
www.newscientist.com/article/2473...
Are Trump's cuts to science the end of the endless frontier? Since the second world war, US economic prosperity and major technological developments have hinged upon the government’s commitment to funding scientific research. The Trump administration is ending that By Jeremy Hsu 28 March 2025 Opportunities outside the US now beckon early-career researchers, says, a Brazilian-born neuroscientist at the California National Primate Research Center whose research with non-human primates aims to address neurological conditions such as Alzheimer’sdisease. She says her lab had multiple federal grants that were either canceled or trapped in suspended review – and she has encountered university hiring freezes while applying for other positions. Now she is preparing to move to Germany to continue her work. “Imagine recruiting a scientist from Brazil, spending eight years training her in the US and when she is ready to become a principal investigator and have her own lab to advance important scientific questions, sending her to Europe,” says Beckman. “This is what is happening to me and others right now.” Scientists have always faced a choice of where to do their work, but the incentives for choosing the US are evaporating. , who won the Nobel prize in physics in 2001, says he faced a choice in 1998 between staying at the Massachusetts Institute of Technology (MIT) or accepting an offer for work in Germany. He remained at MIT – but said he would have gone back home instead if faced with the uncertainty hanging over US researchers today. “Science needs continuity and reliable planning,” says Ketterle. “This is in danger now, and we will soon see the consequences that the US is no longer the place for the best scientists to be.”
March 31, 2025 at 5:14 PM
Reposted by Elaine. D
exceedhergrasp1.bsky.social
This Networking Summit at Quinnipiac is an intro to #MECFS for clinicians, nurses, social workers, PTs/OTs & more.

Design your own interprofessional event-- it might get funded!

In person & virtual; open to the public.

✨REGISTER BY THIS FRIDAY, APRIL 4!✨
➡️ tinyurl.com/mrn4p2ft
Quinnipiac Center from Interprofessional Healthcare Education logo at top left Interprofessional Healthcare Education/Collaborative Practice Networking Summit Mini-grants will be available for implementation of the top IPE/CP ME/CFS and Long COVID programming developed at the workshop. Register by April 4 Event is at: April 12, 2025 10am - 1pm ET Quinnipiac University North Haven Campus In-person event with virtual option available Free of charge, Funded by the Carol L. and Gustave Sirot Endowed Fund On the right is a picture of me in a gold and blue circle. Below, it says Jaime Seltzer, Scientific Director of MEAction, Keynote Speaker
March 31, 2025 at 5:21 PM
Reposted by Elaine. D
exceedhergrasp1.bsky.social
Folks, very bad news for #LongCOVID. Deep breath.

29 awarded grants to do with COVID and Long COVID have been rescinded by NIH. 🧪

www.science.org/content/arti...
Science has learned that grant termination letters went out last night to principal investigators of 29 awards made by the National Institute of Allergy and Infectious Diseases (NIAID), including nine grants that were part of a program hoping to deliver antiviral drugs to prevent future pandemics. Other terminated grants involved research to develop improved COVID-19 vaccines and to address Long Covid, the mysterious lingering aftermath of some SARS-CoV-2 infections. “The research is being treated like we already have all the answers we will need in the future and that the current vaccines work well enough and don’t need improvement, which we know is not true,” says an investigator involved with one of the NIAID grants who asked not to be named for fear of retribution. “Some of the studies being canceled were attempting to make a pancoronavirus vaccine, which would hopefully be available the next time a novel coronavirus jumps species into humans.”
March 25, 2025 at 11:13 PM
Reposted by Elaine. D
putrinolab.bsky.social
Excerpt of an email received by a mentee of mine who is currently transitioning to independence as a career researcher. This is happening all over the country right now. The “equity research” my mentee was proposing was centered around novel neurotechnologies that increase the 1/
March 25, 2025 at 2:58 PM
Reposted by Elaine. D
njbbari3.bsky.social
The pudding… it has the proof.

👇🏽
ukhsa.bsky.social UK Health Security Agency @ukhsa.bsky.social · Mar 24
Our provisional data reveals a 13% increase in reported #tuberculosis cases in 2024 (5,480) compared to 2023 (4,850)—surpassing pre-COVID-19 levels.
🔗 Read our blog post, for more on the trends and patterns behind this surge: bit.ly/4iFwfko
#TB #PublicHealth
With tuberculosis (TB) on the rise again, how can we prevent further spread?
On World TB Day 2025, we look at the most recent data, which showed a rise of 13% in reported numbers of cases in England between 2023 and 2024.
bit.ly
March 25, 2025 at 9:10 AM
Reposted by Elaine. D
longcovidadvoc.com
👋 Hello! We're back after a short respite and one of our totes has been spotted in the wild!

Looking forward to catching up (what have we missed?!)

📝Article about to drop on Pandemic Lessons, so watch this space🚀

🛍️ tinyurl.com/3kcjdj2u
A person stands on a cobblestone street, holding a black tote bag with the text "ME/CFS sucks" printed in bold, red lettering. The individual wears a dark jacket and has a brown bag slung over their shoulder. The background is slightly blurred, with hints of buildings and colorful displays.
March 25, 2025 at 1:36 PM
Reposted by Elaine. D
tomkindlon.bsky.social
It's 7th anniversary of this paper.

A lot of it was only possible due to Alem's heroic FOI victory, which the #PACETrial team fought so hard to stop.That surely wasn't because the real results weren't as flattering as they had presented them?

bmcpsychology.biomedcentral.com/articles/10....

#MECFS
R E S E A R C H A R T I C L E Open Access Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT Carolyn E. Wilshire 1* , Tom Kindlon2 , Robert Courtney3 , Alem Matthees 4 , David Tuller 5 , Keith Geraghty 6 and Bruce Levin 7 Abstract Background: The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. However, the reported analyses did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence. Methods: Here, we present results based on the original protocol-specified procedures. Data from a recent Freedom of Information request enabled us to closely approximate these procedures. We also evaluate the conclusions from the trial as a whole. Results: On the original protocol-specified primary outcome measure - overall improvement rates - there was a significant effect of treatment group. However, the groups receiving CBT or GET did not significantly outperform the Control group after correcting for the number of comparisons specified in the trial protocol. Also, rates of recovery were consistently low and not significantly different across treatment groups. Finally, on secondary measures, significant effects were almost entirely confined to self-report measures. These effects did not endure beyond two years. Conclusions: These findings raise serious concerns about the robustness of the claims made about the efficacy of CBT and GET. The modest treatment effects obtained on self-report measures in the PACE trial do not exceed what could be reasonably accounted for by participant reporting biases. Keywords: Chronic fatigue syndrome, Myalgic ence…
March 22, 2025 at 12:17 AM
Reposted by Elaine. D
aaronca11.bsky.social
#LongCovid PLEASE SHARE

@DeniseColliver (Twitter) will be holding up a banner and placards this Saturday for #LongCovidAwarenessDay and anyone who can go along and show support and solidarity would be appreciated!

Details next post -
March 11, 2025 at 9:51 PM
Reposted by Elaine. D
tomkindlon.bsky.social
A documentary in German called "Chronically Ill – Chronically Ignored" (German name = Chronisch Krank – Chronisch Ignoriert) was released on February 25. One of the filmmakers has severe #MECFS & did all the work from her home.

Google translation:

www-riffreporter-de.translate.goog/de/gesellsch...
Arte-Doku „Chronisch krank“: Leben und Sterben mit ME/CFS
Eine bewegende Arte-Dokumentation gibt Einblicke in das Leben von ME/CFS-Betroffenen. Die Co-Regisseurin Sibylle Dahrendorf ist selbst schwer erkrankt.
www-riffreporter-de.translate.goog
March 10, 2025 at 1:33 PM
Reposted by Elaine. D
longcovidsupport.bsky.social
🔥1/3. Next in the Fireside Chat series from The #LongCovid Clinic - What You CAN Do!

‘Covid & the Immune System’

🗓️ Wednesday 12th March 2025 at 6pm GMT

@binitakane.bsky.social & @helenoakleigh.bsky.social are joined by Consultant Immunologist @petterbrodin.bsky.social!

Link ⬇️
Image with Dr Binita Kane on the left and Dr Petter Brodin on the right. Text reads COVID AND THE IMMUNE SYSTEM. Dr. Binita Kane talks with Dr. Petter Brodin Garfield Weston Chair and Professor of Paediatric Immunology at Imperial College London LIVE Wednesday 12th March 2025 18:00 GMT. THE LONG COVID CLINIC - WHAT YOU CAN DO You Tube @LCCWYCD. Also shown is the Long Covid Support logo.
March 10, 2025 at 6:52 PM
Reposted by Elaine. D
tomkindlon.bsky.social
Adverse reaction following the Lightning Process shared today on my FB page.

Because participants are programmed/hypnotised to say they are well and not mention symptoms & impairments, positive testimonials are very unreliable

www.facebook.com/TomKindlonME...

#MEcfs #CFS #PwME
Ro Magdan I met someone who thought the Lightning Process was good. She actually fainted after one session and broke her arm falling down the stairs, but it took her family a year to deprogram her with the help of her orthopaedic surgeon. It took her that long to acknowledge how distressing and hurtful this "treatment" was. She was so desperate to find a cure which I understand
March 4, 2025 at 9:15 PM
Reposted by Elaine. D
longcovidsupport.bsky.social
📣1/2. Get your #LongCovid Awareness pins & be #LongCovidAwareness Day ready!

Produced in collaboration with @longcovidkids.bsky.social, we'll be sending pins out from this weekend.

💪 Show your support and help the Long Covid community voice reach further than ever before!

Shop link ⬇️
Grey background. Two large white circles in the centre. Left circle contains an image of an enamel pin badge with five teal rings, with a bold '5' around it and text reading LONG COVID AWARENESS. The other circle contains an image of an enamel pin in the shape of a ribbon in teal and outlined in black, bearing the words LONG COVID AWARENESS. In the top right corner is the Long Covid Support logo and in the bottom left is the Long Covid Kids logo. Header says LONG COVID AWARENESS below which is written RAISING AWARENESS FOR THE LONG COVID COMMUNITY. In the bottom right corner it says SHOP NOW FOR MARCH 15th.
February 28, 2025 at 8:26 AM
Reposted by Elaine. D
daltmann.bsky.social
www.science.org/doi/10.1126/...
Key paper here for those interested in T cell exhaustion 👇
KLF2 maintains lineage fidelity and suppresses CD8 T cell exhaustion during acute LCMV infection
Naïve CD8 T cells have the potential to differentiate into a spectrum of functional states during an immune response. How these developmental decisions are made and what mechanisms exist to suppress d...
www.science.org
February 14, 2025 at 7:12 AM
Reposted by Elaine. D
polybiorf.bsky.social
Dr. Ed Breitschwerdt is investigating the proportion of Long Covid, ME & EDS patients with Borrelia, Babesia and Bartonella in their blood using a highly accurate ddPCR assay. “We’ve seen every combination of infection, from only 1 organism to co-infection with all 3.”
February 14, 2025 at 5:22 PM
Reposted by Elaine. D
daniellebeckman.bsky.social
Them: "Covid doesn't infect the brain! Covid doesn't infect the brain!"

The brain:
(yeah, that's my image showing neurons infected with Covid, as featured on the cover of UC Davis Neurology review of the year)

With @1goodtern.bsky.social
UC Davis Department of Neurology 2024 Year In Review. The cover image shows neurons infected with COVID, being chased by glial cells
February 14, 2025 at 5:48 PM
elainemdc.bsky.social
Olive Leaf Extract has really made a difference to my food intolerances, been on it 1 month now, one of the few supplements that have made an impact 🙌
Interesting article OLE as a Mast Cell Stabiliser #LongCovid

www.sciencedirect.com/science/arti...
Olive leaf extract (OLE) reduces mast cell-mediated allergic inflammation
Mast cell-mediated reactions promote various allergic disease, including anaphylaxis, allergic rhinitis, asthma, and atopic dermatitis. Different data…
www.sciencedirect.com
February 13, 2025 at 11:13 PM
elainemdc.bsky.social
I want to leave the other place, its getting toxic and Elmo is totally destroying it. Hope I can find my #LongCovid friends and #ChronicIllness community and advocates here 🩷
February 13, 2025 at 1:46 PM
Reposted by Elaine. D
polybiorf.bsky.social
In a recent RCT of Larazotide for GI symptoms in Long Covid, “the clearance in the Larazotide group of the Spike clearance was much faster,” Dr. Fasano says. “About 30% of placebo group tested positive for spike, while eventually none of them had Spike in Larazotide group.”
January 31, 2025 at 8:02 PM
Reposted by Elaine. D
daniellebeckman.bsky.social
This study is remarkable and I will keep talking about it. Many findings, but the presence of SARSCoV2 in the skulls of patients who had recovered from infection but died of non-COVID-19 causes is a major. What if long-lasting viral presence is inducing chronic inflammation, for example? #NeuroCovid
Article: Persistence of spike protein at the skull-meninges-brain axis may contribute to the neurological sequelae of COVID-19
January 31, 2025 at 8:48 PM
Reposted by Elaine. D
longcovidsupport.bsky.social
🔥 1/3. Next Fireside Chat from The #LongCovid Clinic - What You CAN Do!

🕕 Weds 5th February 2025, 6pm GMT

‘Breathing Re-education and, Why? How? and the science behind it’

@binitakane.bsky.social & @helenoakleigh.bsky.social are joined by Dr. Louise Oliver, GP & Breathing Practitioner.

Link ⬇️
January 31, 2025 at 9:31 PM
Reposted by Elaine. D
bhanlon15.bsky.social
ABC News: '5 years since COVID declared public health emergency in US, still killing thousands'

'According to the Mayo Clinic, some researchers have estimated that 10% to 35% of people who have had COVID-19 went on to have long COVID.'

abcnews.go.com/Health/5-yea...
5 years since COVID declared public health emergency in US, still killing thousands
On the fifth anniversary of the U.S. declaring a public health emergency over COVID-19, people continue to lose their lives.
abcnews.go.com
January 31, 2025 at 10:36 PM
Reposted by Elaine. D
daniellebeckman.bsky.social
Blood vessels arriving in the brain for this #FluorescenceFriday! Major components of the 'blood-brain barrier' are in this photo. This 'barrier' is just a bunch of cells that can be hijacked by viruses, but block most antiretroviral drugs access to the brain. What is the future? Nanoparticles?
Blood vessel arriving in the brain, surrounded by astrocytes
January 31, 2025 at 10:44 PM