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RAPPLER | Philippine & World News | Investigative Journalism | Data | Civic Engagement | Public Interest [Unofficial] @[email protected] ·[Decoded] How a budget ‘exposé’ bites back against radio commentator
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RAPPLER | Philippine & World News | Investigative Journalism | Data | Civic Engagement | Public Interest [Unofficial] @[email protected] ·[Decoded] How a budget ‘exposé’ bites back against radio commentator
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RAPPLER | Philippine & World News | Investigative Journalism | Data | Civic Engagement | Public Interest [Unofficial] @[email protected] ·[Decoded] How a budget ‘exposé’ bites back against radio commentator
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RAPPLER | Philippine & World News | Investigative Journalism | Data | Civic Engagement | Public Interest [Unofficial] @[email protected] ·[Decoded] How a budget ‘exposé’ bites back against radio commentator
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RAPPLER | Philippine & World News | Investigative Journalism | Data | Civic Engagement | Public Interest [Unofficial] @[email protected] ·[Decoded] How a budget ‘exposé’ bites back against radio commentator
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Auf der Suche nach einem schicken #Titan #Armband für die #AppleWatchUltra? Vielleicht ist das von #Decoded etwas für euch! Hier mein Video: https://youtu.be/xrLARk_yyRE
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Interview with Professor Chris Ponting on Building ME/CFS Research Infructure with PRIME
By David Tuller, DrPH
This is a crowdfunding month for UC Berkekely and Trial By Error. If you’d like to support my work, here’s the link: https://crowdfund.berkeley.edu/project/47768
(Donations are tax-deductible for US taxpayers.)**********
The UK Medical Research Council recently awarded £800,000 over four years to PRIME, a partnership between Action For ME and the University of Edinburgh. PRIME will seek to develop a research infrastructure to pursue investigations into ME/CFS. The funding starts this month.
According to Action For ME, the goals of PRIME are:
“1. Coordinate and engage researchers by creating at least 15 new research collaborations. We will bring together researchers from a range of backgrounds, along with private sector partners to investigate the genetics, biomarkers and disease mechanisms behind ME/CFS.
“2. Strengthen International Research Networks by forming two global consortia, one with a focus on genetics and the other on molecular biomarkers. The aim of the consortias will be to share data, replicate research and create a shared research standard.
“3. Build a Public and Patient Involvement (PPI) pool with at least 100 trained contributors (people with ME and their carers). This will be the world’s first large scale PPI pool available for ME researchers across the UK so that their research can be created and shaped by people with lived experience.”
Chris Ponting, a geneticist at the University of Edinburgh, is the lead investigator of DecodeME, a study that recently identified eight spots on the genome implicated in ME/CFS. Professor Ponting, along with Sonya Chowdbury, Action For ME’s CEO, will oversee PRIME. I spoke last week with Professor Ponting about the project and related issues. (I also spoke with Professor Ponting a couple of months ago about the DecodeME findings.)
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RAPPLER | Philippine & World News | Investigative Journalism | Data | Civic Engagement | Public Interest [Unofficial] @[email protected] ·
[Decoded] The foundations of a UniPink ‘reality’ are shaky at best
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Just watched the DecodeME webinar presenting the initial findings, and talking about the reaction from the media, other researchers and the community.
The study is finished, they are working on the formal paper to be peer-reviewed and published, but future steps are getting funding for a long Covid/ME genetic study.
And possibly more on links between ME/CFS and fibromyalgia.I anticipate finding shared genetic signals between all three, as the overlaps in people who have 2 or all 3 of these in a single person or in families seem strong, as well as the overlap in symptoms.
Note their website will close soon, the huge dataset will transfer to the University of Edinburgh for future research (95% of us signed up to be contacted for this).
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Teste für euch übrigens gerade das #Decoded #Titan #Applewatch Gliederarmband. Sehr sehr nett muss ich sagen.
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Here's the latest News in Brief (Aug 4-10) from the Science for ME forum, a weekly summary of ME/CFS and Long Covid news:
https://www.s4me.info/threads/news-in-brief-august-2025.45582/#post-632266
Don't miss the #DecodeME section!
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@GollataCaitlyn Yes! Most of the #DecodeME discussion is over my head, but the little bits I can understand are exciting!
I'm really happy that the study was so large, and also that it included a lot more severe ME/CFS patients since the DNA kits were sent out and returned by mail. No need for folks to show up in person and then get PEM from the exertion.
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Donation links to support the researchers behind #DecodeME
Links:
https://www.actionforme.org.uk/research-campaigns/our-research-work/genetics-centre-of-excellence/https://www.actionforme.org.uk/sequenceme-first-of-a-kind-genetic-study/
https://www.actionforme.org.uk/research-campaigns/our-research-work/decodeme-donate/
https://donate.ed.ac.uk/support/ME-CFSResearch
Screenshot from latest Science for ME weekly update
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If you'd like to support the researchers behind #DecodeME with other projects such as #SequenceME ( https://www.clinicalresearchnewsonline.com/cln/pressreleases/2024/12/18/oxford-nanopore-action-for-me-and-university-of-edinburgh-launch-groundbreaking-study-into-the-genetics-of-me ) , here's a donation link https://www.decodeme.org.uk/support-us/
Alternatively donate directly to Prof Ponting's #MECFS lab research
https://donate.ed.ac.uk/support/ME-CFSResearch@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME -
DecodeME Pre-Print Reports Eight “Genetic Signals” Related to Immune Function and Nervous System
By David Tuller, DrPH
People with ME/CFS differ genetically from the general population, according to the long-awaited results of the largest biological study of the disease to date. By comparing DNA samples from more than 15,000 patients with ME/CFS diagnoses to samples from those who were not diagnosed, the investigators identified eight “genetic signals,” including ones relating to immune function after infection and to nervous system.
The results of the study, called DecodeME, were released by the University of Edinburgh yesterday in a pre-print version that has not yet been peer-reviewed. The findings immediately provided a jolt of hope among patients and advocates involved with ME/CFS. The mood represented a shift since July 22nd, when the UK government released an ME/CFS “Delivery Plan” that that was widely panned as merely a skeleton of a plan with little meat–or funding.
DecodeME launched a few years ago with a major outreach effort to encourage the submission of saliva samples. Large segments of the ME/CFS patient and advocacy communities strongly backed the project and have been eagerly anticipating the release of the findings.
The pre-print results received widespread coverage in the UK. Articles appeared in The Guardian, Financial Times, on the BBC, and elsewhere. Here’s Professor Chris Ponting, a geneticist at the University of Edinburgh and the study’s lead investigator, on the potential significance of the set of genetic markers identified, as quoted in Financial Times:
“These [genetic] signals align with how people with ME/CFS describe their illness…Highly targeted studies are now needed to understand why each of these eight signals is linked with ME/CFS so that we can move towards future diagnostics and treatments. It is a forgotten and forsaken disease that should have had a genetic study like this 15 years ago.”
The UK’s Medical Research Council (MRC) provided £3.2 million for DecodeME. In making the decision, perhaps some smart people at the MRC understood that it was a waste to spend, along with other government funders, £5 million on the the PACE trial boondoggle—a pet project of leading psychiatrists and others with an apparently limited understanding of appropriate and ethical approaches to conducting studies and reporting results. PACE purported to prove that cognitive behavior therapy and graded exercise therapy were curative treatments for ME/CFS. In reality, the reported results were fraudulent.
With Decode ME, some caveats are definitely in order. First and foremost, this work has not yet been vetted through the standard processes of scientific publishing. The peer-reviewed and published version is bound to differ from the pre-print in major or minor ways.
Second, findings like these offer clues to pursue further, not definitive answers. They will not lead directly to treatments. The results, if sustained, will hopefully trigger intensive efforts to examine the biological mechanisms influenced by these genetic markers and ways and identify targets of intervention with medication.
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Science Media Centre Weighs In
Not surprisingly, the so-called Science Media Centre in London, a stronghold of support for the biopsychosocial approach to complex conditions like ME/CFS, gave Professor Alan Carson an opportunity to vent some spleen.
Professor Carson is a neuropsychiatrist at the University of Edinburgh, an expert on functional neurological disorder, and a die-hard member of the biopsychosocial ideological brigades. In his comment, he refers to the illness as CFS/ME. This nomenclature fetish is widespread among Professor Carson’s ideological travellers. It is unclear why they feel the need to persist in this petulant form of resistance. Every time these folks use the phrase “CFS/ME,” it’s like they’re stamping their little feet in protest at how science is passing them by. It’s kind of sad.
In his comment, Professor Carson huffed something more or less along these lines: The findings most likely represent statistical noise due to uncertainties about the patient population; or if they don’t represent statistical noise, they’re meaningless because we’ve known for years that “CFS/ME” might have a genetic component; or if they’re not meaningless, they’re at least very modest, and similar genetic markers identified in other diseases haven’t led to tangible progress; or even if they might lead to some modest advance, any such development is aeons in the future.
Professor Carson’s smug tone speaks for itself. No one should take anything he says at face value.
Luckily, the SMC also invited two less biased observers to comment. This balance is certainly an improvement. Years ago they might have invited, in addition to Professor Carson, mostly other biopsychosocial stalwarts. In this case, the other commenters offered positive assessments of the findings while also making appropriate cautionary points about the limitations.
Said Alena Pance, Senior Lecturer in Genetics, University of Hertfordshire:
“This study identifies some key potential areas for future study. It lays the groundwork for other researchers and pharmaceutical companies to follow, by identifying the areas to look at both for understanding the causes of ME/CFS and for developing new drugs to treat it.”
And Jackie Cliff, Senior Lecturer, Brunel University of London, said:
“It is very interesting to me, as an immunologist, to see that genes involved in the immune response have been identified: this will guide us to understand better the role of infection and the mechanism of disease-susceptibility…This study should stimulate vigorous research in the ME/CFS area.”
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Die niederländische Marke #Decoded hat ein neues #Accessoire für die #AppleWatch präsentiert. Das #TitaniumStrap kommt in einem modernen Gliederdesign daher, kann individuell in der Länge eingestellt werden und wird mit einem Magnetverschluss verschlossen. Die Neuerscheinung ist passend zur Apple Watch Ultra in den beiden Farbvarianten Titanium Black und Titanium Natural erhältlich.
Alle Infos: https://www.appgefahren.de/decoded-titanium-strap-neues-edles-uhrenarmband-fuer-die-apple-watch-381852.html
#appgefahren #Apple #AppleBlog #iPhone #iPad #Mac #AppleWatchAccessories #Smartwatch
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Die niederländische Marke #Decoded hat ein neues #Accessoire für die #AppleWatch präsentiert. Das #TitaniumStrap kommt in einem modernen Gliederdesign daher, kann individuell in der Länge eingestellt werden und wird mit einem Magnetverschluss verschlossen. Die Neuerscheinung ist passend zur Apple Watch Ultra in den beiden Farbvarianten Titanium Black und Titanium Natural erhältlich.
Alle Infos: https://www.appgefahren.de/decoded-titanium-strap-neues-edles-uhrenarmband-fuer-die-apple-watch-381852.html
#appgefahren #Apple #AppleBlog #iPhone #iPad #Mac #AppleWatchAccessories #Smartwatch
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Die niederländische Marke #Decoded hat ein neues #Accessoire für die #AppleWatch präsentiert. Das #TitaniumStrap kommt in einem modernen Gliederdesign daher, kann individuell in der Länge eingestellt werden und wird mit einem Magnetverschluss verschlossen. Die Neuerscheinung ist passend zur Apple Watch Ultra in den beiden Farbvarianten Titanium Black und Titanium Natural erhältlich.
Alle Infos: https://www.appgefahren.de/decoded-titanium-strap-neues-edles-uhrenarmband-fuer-die-apple-watch-381852.html
#appgefahren #Apple #AppleBlog #iPhone #iPad #Mac #AppleWatchAccessories #Smartwatch
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Die niederländische Marke #Decoded hat ein neues #Accessoire für die #AppleWatch präsentiert. Das #TitaniumStrap kommt in einem modernen Gliederdesign daher, kann individuell in der Länge eingestellt werden und wird mit einem Magnetverschluss verschlossen. Die Neuerscheinung ist passend zur Apple Watch Ultra in den beiden Farbvarianten Titanium Black und Titanium Natural erhältlich.
Alle Infos: https://www.appgefahren.de/decoded-titanium-strap-neues-edles-uhrenarmband-fuer-die-apple-watch-381852.html
#appgefahren #Apple #AppleBlog #iPhone #iPad #Mac #AppleWatchAccessories #Smartwatch
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@C3nC3 - schon gesehen?
https://www.youtube.com/watch?v=iPUcjs7Ki3Q
#decode #gametwo #gaming #spielejournalismus
Leider sehr wahrscheinlich wieder das nächste Format, was gern ein Patreon-/Steady-Abo hätte, aktuell immerhin noch optional. (Ich kann es aber "langsam" echt nicht mehr sehen/hören: Jeder Journalist/Künstler macht (teils gezwungenermaßen) sein eigenes Ding und hätte gern paar Euro jeden Monat im Abo.)
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Decoded by Dress Code: The Best Summer Wedding Guest Dresses for Every Shape and Style
#Lifestyle #Shopping #Bestofamazon #Fashion #Shoppinghttps://www.hollywoodreporter.com/lifestyle/shopping/best-wedding-guest-dresses-1235140850/
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📚 Developed by #AnthropicFellows with #DecodeResearch collaboration
🛠️ Supports circuit tracing, visualization, annotation and sharing capabilitieshttps://www.anthropic.com/research/open-source-circuit-tracing
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🎉 #DicoDesAdos : 6500 mots !
Le verbe "obnubiler" devient notre 6500e entrée grâce à Rachel, bibliothécaire en formation à la Médiathèque Valais, lors d'un atelier @WikimediaCH pour la Semaine des médias.
Quel mot symbolique pour marquer cette étape ! 📚
Merci à la CIIP, à la médiathèque de Saint-Maurice et aux participant·e·s enthousiastes.
#francophonie #éducation #wiki
#dictionnaire #francophonie #éducationmédias #médiathèquevalais #wiki #collaboratif #jeunesse #linguistique
