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...
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
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.
"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
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.”
I spoke with @newscientist.com about #BrainDrain, and why I am leaving the U.S. after 8 years.
www.newscientist.com/article/2473...
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
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
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.”
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...
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/
The pudding… it has the proof.
👇🏽
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.
👋 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
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…
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
#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 -
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...
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.
🔥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 ⬇️
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
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
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.
📣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 ⬇️
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.”
UC Davis Department of Neurology 2024 Year In Review. The cover image shows neurons infected with COVID, being chased by glial cells
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
400mg twice daily
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...
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 🩷
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.”
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
🔥 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 ⬇️
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...
Blood vessel arriving in the brain, surrounded by astrocytes
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?
Title of the webinar: Combining Fluorescence Microscopy and 3D Reconstruction to Investigate Neuron-Glia Interaction in Neurological Diseases
Are you interested in doing 3D microscopy? I will be showing on Dec 10 how I use high-resolution microscopy combined with 3D reconstruction to investigate neurodegeneration and neuroinflammation in the brain, especially with viral infections! Register here: register.gotowebinar.com/register/636...
