The ME/CFS research foundation has started tracking the Norway and Iceland research landscape (alongside existing Germany, Austria, Switzerland and the Netherlands tracking). Image is of Norway publications. They have 3 Phase II trials currently running. mecfs-research.org/en/news-mrr-...

Small study (38) finds(just about) clinical significance that Solriamfetol, a drug for narcolepsy, improved fatigue in #pwme. They used the Fatigue Symptom Inventory which is a bad 1-10 measure all about fatigue. Its not open access, but I suspect there are issues and limited improvement.

"A study using DNA samples from 418 people with ME/CFS found that certain gene variants encoding inhibitary KIRs [Killer-cell immunoglobulin-like receptors] are more common in ME/CFS..., further supporting the role of Natural Killer cells in ME/CFS" www.meresearch.org.uk/natural-kill...

"The reliability of the Office for National Statistics (ONS) data relies on coroners naming specific substances on death certificates, something which often does not happen." Same with cause of death, which in #pwme ME is removed. www.bbc.co.uk/news/article...

Some of the press is "covering" the current Covid wave but their entire messaging is unchanged, its nothing to worry about. They never mention Long Covid. A coordinated disinformation campaign by the UK press. www.mirror.co.uk/news/uk-news...

🧵The number of papers going through pubmed on Long Covid is dropping. The height was 2022 with 11166 papers whereas last year there was 7369 and at current rates this year will reach 6,645. but for ME/CFS however....

What the ME delivery plan should have looked like - full post here: www.instagram.com/p/DMa8sjPMzd...

"Using an N95 respirator for 4h continuously did not adversely affect work efficiency... it is unlikely that N95 respirators will adversely affect the performance of healthcare workers." pubmed.ncbi.nlm.nih.gov/40666495/

7T brain and calf muscle MRS looking into energy metabolism finds increased lactate in #mecfs (CDC criteria) and reduced choline in #longcovid (>=2 fever, shortness of breath, persistent cough, taste/smell, all fatigued). No difference in Creatine found. www.nature.com/articles/s41...

Master Athletes get #LongCovid too, including severe. They didn't find the usual female 2:1 ratio it seemed even between the sexes. Also found a link between blood CRP and self reported cardiac and flu like symptoms. pubmed.ncbi.nlm.nih.gov/40650463/

He said there were no good options, adding: “It’s the least-worst decision that could have been taken at the time.” The High Court ruled in 2022 that ... discharging hospital patients into care homes at the start of the pandemic were “unlawful”. www.independent.co.uk/news/uk/home...

Large study looking at reinfections finds initial infections of Delta don't seem to worsen with subsequent infections, whereas those initially suffer Omicron do. "Repeated infection with Omicron variants may increase the risk of long-term symptoms." academic.oup.com/cid/advance-...

"In LC patients, an early phase of low-grade inflammation transitioned into significant reduction in proinflammatory biomarkers ... this pattern suggests a possible suppression or exhaustion of the immune response in the months following acute infection" www.mdpi.com/1648-9144/61...

77 Patient genetic study on #mecfs. "Significant associations with ME/CFS were harboured in genes that belong to the Neuroblastoma Breakpoint Family encoding Olduvai (DUF1220) domains, namely NBPF1 (rs3897177), NBPF10 (rs1553120233), and NBPF16" pubmed.ncbi.nlm.nih.gov/40564862/

🧵Cells infected with pseudovirus could increase the accumulation of ferrous ions and ROS in mitochondria and be released into the cytosol after removing pseudovirus, thereby causing mitochondrial dysfunction...

"The things we learned – about clean air, proper sick pay, the importance of staying home when ill – are being forgotten, even though the virus hasn’t gone away." #covid www.independent.co.uk/news/health/...

"After taking liraglutide for 12 weeks, the participants reported that the mean number of days per month on which they experienced a headache dropped from almost 20 to just under 11. Of the 31 participants, 15 had a reduction of at least 50% in monthly headache frequency."

Jarred Younger on some of the issues with the recent 86 patient Rapamycin trial. The dropouts due to lack of efficacy, the lack of ME/CFS criteria information. Feels its mainly research focussed to design a better study. www.youtube.com/watch?v=JqUa...

Hyperbaric chamber and Oxygen with 3 control groups for oxygen, pressure and neither results in no differences. It doesn't work, another of the early treatment options fails in a random control trial. #longcovid www.dhmjournal.com/index.php/jo...

T cells can cause inflammation in a mouse intestine and they can then migrate to the central nervous system and they produce high levels of GM.CSF, Interferon gamma and IL-17A triggering neurological damage. The t cells activate the microglial cells. www.nature.com/articles/s41...

"Despite the uptick in cases, there’s been little public discussion of precautions like mask-wearing, isolation or staying at home. With guidance now unclear and testing scaled back, many people aren’t sure whether the old rules still apply" #covid www.independent.co.uk/news/health/...

Nature is going to be including the peer review comments alongside its papers in the future for transparency and showing the process. www.nature.com/articles/d41...

Title table tests looking at cerebral blood flow (CBF) and cardiac output (CO) finds 2 groups in #mecfs. 2/3rds had a 1:1 CBF drop to CO reduction. 1/3rd reduction in CO came with substantial increase in Heart Rate. No relationship between CBF/CO. www.mdpi.com/2077-0383/14...

Study measured the activity of nerves supplying the foot during ankle contractions finds its 25% lower in #pwme. Suggests impaired motoneuron behaviour could contribute to the muscle weakness. www.meresearch.org.uk/impaired-mot...

🧪 @sunny-rae1.bsky.social @johnmcdonnellmp.bsky.social Thank you Rae for the briefing on #LongCovid you gave John and John for putting it forward in today’s debate on the Pandemic

Electronic records in the UK looking for patients coded as Long Covid finds just 36886. That is far worse than the 70,000 that were referred to clinics meaning many were never diagnosed. This is appallingly bad. #longcovid bjgpopen.org/content/earl...

"Despite its impact on population health outcomes, health systems, and the economy...there are limited published estimates on Long Covid, limited studies on its diagnostics and therapeutics, and limited media and news coverage." onlinelibrary.wiley.com/doi/10.1002/...

"Greater than one-fifth of NZ children reported persisting symptoms after Covid-19 infection. Post-Covid-19 symptoms impacted the quality of children's day-to-day lives. Preventing infection is key to preventing post-Covid-19 symptoms." #longcovid onlinelibrary.wiley.com/doi/10.1111/...

"Through sharing experiences, symptoms, scientific information and treatment options, forum users contribute to knowledge production processes that change the definition of LC as a diagnosis" pubmed.ncbi.nlm.nih.gov/40293208/

#longcovid patients showed -clear signs of T cell hyper-activation predominantly in the CD8+ T cell subset - 4-fold higher expression of CD25 - 2-fold more effector-memory T cells - 7-fold higher release of IL-3 - 5-fold more IL-3-expressing CD8+ pubmed.ncbi.nlm.nih.gov/40287027/

1. [ME/CFS] was redefined in the 1990s by a group of doctors to be about severe fatigue. 2. Their own studies show CBT and GET do not lead to improvement. 3. The GET manual does include fixed incremental increases in exertion. Sunlight on what they did! pubmed.ncbi.nlm.nih.gov/40283139/

"Persistent immune disturbances in individuals with PCS [#longcovid] are characterized by reduced SARS-CoV-2-specific T cell responses, increased B cell activation, and altered inflammatory and vascular biomarkers." pubmed.ncbi.nlm.nih.gov/40279368/

European study watching people to develop ME/CFS. 5% of those watched developed mono, 34% didn't recover after six months. Of those 68% met ME/CFS definition (so about 1.16% of everyone). Those that developed ME had lower interleukins (5 and 3) before. www.meresearch.org.uk/why-might-ep...

The Scottish parliament marks international ME day. "(ME/ CFS), which affects at least 20,000 people in Scotland, is often misunderstood, mis-diagnosed and under-diagnosed, and is grievously under-researched" www.meresearch.org.uk/scottish-par...

Mid size study out of Egypt on people infected with Covid found 83.5% of them had at least one lasting symptom six months later. Most common were fatigue, myalgia and dyspnea, hospitalised patients twice as likely to have symptoms. pubmed.ncbi.nlm.nih.gov/40217997/

How to hide a pandemic 1. Green-mapping - Redefining terms 2. Calm-mongering - Downplaying the harms 3. DARVO- Freedom! 4. Myth-making 5. False framing - Bad assumptions and Dilemmas 6. Othering - "Vulnerable" 7. Data Manipulation - Slow down testing howtohideapandemic.substack.com/p/how-to-hid...

Jared Younger on why most people get rejected from clinical trials. At various sizes only a small percentage get accepted - Small 5% - Medium 10% - Large 30% This is to reduce variability (drugs,other conditions) and improve the chance of significance. www.youtube.com/watch?v=1w51...

On RFK "It’s been a dark time, very disheartening and devastating...while no administration has given the necessary resources to tackle Long COVID or any infection-associated chronic condition, the attacks that are happening now will set us back" thesicktimes.org/2025/04/07/l...

"Our findings show that older women who assessed their health as poor had a higher risk of dying early than those who rated their health as good," A "well duh" finding but not in medicine, medicine ignores what the patient says and prefers its tests. www.sciencenorway.no/cancer/if-pa...

MEA's Count ME study of 10458 diagnosed ME/CFS and Long Covid patients. 78.2% of ME patients had PEM, 88.2% fatigue and sleep issues. Similar in Long Covid. "22.1% diagnosed within 1–2 years of symptom onset and 12.9% taking more than 10 years"🧵 bmjopen.bmj.com/content/15/4...

A lot of people harmed by treatments and refusal of treatment. The harm biases towards women, financially deprivation and the long term ill and they were more harmed. The discussion about this on the reddit NHS shows this wont be accepted🧵 pubmed.ncbi.nlm.nih.gov/40174977/

A tiny little local newspaper vastly outperforms the big guys by describing ME/CFS including a lot of the optional symptoms and just informs people without any spin. Its probably one of the best straight forward "disease you don't know about" articles. www.getsurrey.co.uk/news/health/...

"SARS-CoV-2 infection indirectly leads to profound and post-acute COVID-19 alterations in the stomach at the cellular and molecular levels, resulting in adverse outcomes following co-infection with SARS-CoV-2 and H. pylori." pubmed.ncbi.nlm.nih.gov/40157534/

"the mean time to obtaining a lupus diagnosis was reported to be almost seven years. Three out of four respondents said they had received at least one misdiagnosis along the way" Huge long term impacts of Psychosomatic misdiagnosis found. virology.ws/2025/03/31/t...

"Paying for reviews moderately improved both the number of accepted invitations and the speed at which reviews were carried out." "Journal editors assessed reviews from paid and unpaid reviewers and found no difference in quality." www.nature.com/articles/d41...

"Practitioners at the event providing Long Covid services verbalised they have been facing loss of direct NHS funding, and having to bid for funding from their Integrated Care Board. This has included merging with ME/CFS services in some instances." meassociation.org.uk/2025/03/the-...

A "map" created by NIHR of 639 studies of ME/CFS from January 2018 to May 2023. Concerningly only 11% of studies included people with postexertional malaise. The map of types of studies (7) and goals is quite interesting as is the bias chart (9). meassociation.org.uk/2025/03/nihr...

"ME/CFS patients, compared to controls, have a significantly higher load of EBV. IFN-I autoAbs cannot explain IFN-I dysfunction" IFN-I dysfunction could be due to viral evasion and degradation of IFN-I receptors needs to be studied. pubmed.ncbi.nlm.nih.gov/40143349/

30 person Hungarian MRI study looking at Post COVID infection headache sufferers. "Persistent post-COVID-19 headaches may be linked to structural white matter changes observed in MRI." www.mdpi.com/2035-8377/17...

"“I understand there is this enthusiasm to support chronic disease. Well, long COVID is the exemplar of chronic disease,” Al-Aly says. “I would like to remind RFK, Jr. that he told the nation ... he’s going to prioritize research on long COVID" www.scientificamerican.com/article/hhss...