ME since 2017 (Mild), 2019 Moderate , 2020 Severe Long Covid since March 2020 (V Severe) Funcap55 = 1.9 ( (Severe)
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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-...
journals.sagepub.com/doi/10.1177/...
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...
Covid is dropping fast too. A whopping 140,179 papers in 2021 and its down to 58599 last year. Still much much bigger than the Long Covid and ME/CFS showing the long term disease aspect is still comparatively poorly studied.
Harder to quantify is novelty and value of the papers. Some high quality ME/CFS papers this year I think its improved a lot in 5 years. Long Covid however is getting tagged like its a date range on unrelated papers. Its a reduction of good amidst plenty of bad.
ME/CFS is growing but still a very small number of papers especially compared to Long Covid. Long Covid is shrinking fast. The combined number has dropped a lot from ~13000 in 2022 to ~6900 this year. Its nearly halved.
ME/CFS has grown significant, there was 9 papers in 2001 and 258 last year. At current rates this year there will be 313 papers, the most ever.
š§µThe 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: āItās the least-worst decision that could have been taken at the time.ā The High Court ruled in 2022 that ... discharging hospital patients into care homes at the start of the pandemic were āunlawfulā. 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...
These genes are involved in cortical neurogenesis, brain evolution, and neuroblastoma, and have been implicated by several studies in schizophrenia and autism.
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/
Lactoferrin, Q10 and Echinacea purpurea extract nutritional strategy to suppress ferrous ion accumulation, ROS formation and advanced mitochondrial dysfunction. pubmed.ncbi.nlm.nih.gov/40566632/
š§µCells 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 ā about clean air, proper sick pay, the importance of staying home when ill ā are being forgotten, even though the virus hasnāt gone away." #covid www.independent.co.uk/news/health/...
www.nature.com/articles/d41...
"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."
The big one for me is the combination that only 40 of the 86 completed the study and most had efficacy issues but they aren't included in the results so its heavily biased, but also the improvement in Bell score is actually quite small, only about 5%.
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...
We also know that the official count of deaths is atrociously bad and better estimates had it at 27x the official number. Worse perhaps is since then excess deaths have accounted for about the same again meaning a death toll more like 52 million and continuing to climb.
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, thereās been little public discussion of precautions like mask-wearing, isolation or staying at home. With guidance now unclear and testing scaled back, many people arenāt 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...
That was probably muscle necrosis, cellular death. It is also somewhat vascular damage and death as well, maybe oxygen depravation to the tissue resulting in cell death.
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...
š§Ŗ @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 todayās debate on the Pandemic
This compares to the GP Patient survey where 3.2 million patients said they know they have Long Covid. The Healthcare workers survey had 35% say they had Long Covid with 10% claiming they had a diagnosis. There is no way from this data that 10% were ever officially diagnosed.
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/...
What strikes me so much about this data is that about 15% of NZ children had an illness before Covid showed up and now that is 35%. Long Covid impacts more children than every other disease combined. We do things for those other diseases, we spend millions on them, but not Covid.
"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...
In health care workers, who are much better placed to know that their symptoms aren't normal or something else the meta study from today showed 40% prevalence. A lot more people have this than know it.
Welcome to the club of at least 400 million world wide in it all of which would very much like to leave! Its a truly dreadful disease even its mild form.
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/
It's a waste of time to explain it, they won't believe you anyway and they are thousands of papers out of date and they won't read a single line let alone thousands of pages to catch up.
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...
"The baricitinib trial, Iām really excited about, [and] Dr. Putrino and Iwasaki and Proalās rapamycin trial. Iām looking forward to still seeing how RECOVER-TLC ends up and what they choose."
On RFK "Itās 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...
"half of the diagnosed patients (3026, 47.6%) were seen in a hospital-based ME/CFS specialist service. NHS GPs saw most diagnosed (4758, 74.9%) and undiagnosed (177, 63.0%) patients."
"Many respondents (1255, 43.40%) had not seen a specialist in 5 years or longer" "A very small percentage of respondents stated that they had not been seen (78, 2.70%)"
NHS experience after being diagnosed with ME/CFS, 33.76% described their experience as very poor, poor and mixed experiences were also commonly reported, with 18.39% and 25.52%. Only 5.29% reported good experiences , excellent 1.39% or did not know 0.53%.
"Of the participants with ME/CFS or long COVID, a subset (n=791) reported both conditions." "83.4% (6053) of these respondents were female, 14.9% (1077) were male and 1.8% (129) were non-binary or preferred to self-describe."
"Only 10.1% of participants reported a positive impact on care, and satisfaction with NHS services remained low (6.9% for ME/CFS and 14.4% for long COVID)."
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 1ā2 years of symptom onset and 12.9% taking more than 10 years"š§µ bmjopen.bmj.com/content/15/4...
"People with long-term illness or disability, those in lower social grades, and people in other disadvantaged groups reported higher rates and more severe impact of harm."
"9.7% participants reported harm caused by the National Health Service (NHS) in the last 3 years through treatment or care (6.2%) or the lack of access to care (3.5%)"
"Two-thirds of those making a complaint felt it was not handled well and approximately half were satisfied with PALS."
"People āfeelā a lot of things that arenāt necessarily entirely true" "The chronic condition is causing the harm. Not the NHS." www.reddit.com/r/nhs/commen...
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 acceptedš§µ 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-...
Goes to show they are still a substantial part of the "research" in ME/CFS and that biological research has barely begun even from 2018 onwards. I tend to ignore all the pyschology and exercise nonsense but I see them more often than the biology papers.
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...
"āI understand there is this enthusiasm to support chronic disease. Well, long COVID is the exemplar of chronic disease,ā Al-Aly says. āI would like to remind RFK, Jr. that he told the nation ... heās going to prioritize research on long COVID" www.scientificamerican.com/article/hhss...
Retrospective large study looking at sotrovimab used on Covid patients had a 8% decreased risk of getting Long Covid. Their definition of Long Covid is "ā„ 1 of 26 PASC symptoms ā„ 30 days after the first COVID-19 diagnosis" link.springer.com/article/10.1...
A drug called DR-0201 in early human testing may have the ability to āresetā a patientās immune system and ward off debilitating inflammatory diseases. It can engage specific immune cells that can prompt the body to deplete disease-causing B cells. www.biopharmadive.com/news/sanofi-...
"4.8% of respondents reported having LC, and 9.1% were unsure." "Improved awareness is needed amongst the general population and health care professionals to ensure those most vulnerable in society are identified and provided with care and support." onlinelibrary.wiley.com/doi/10.1111/...
"This showed that 4.8 per cent of people report suffering from long Covid, while a further 9.1 per cent believed they may have it but are not sure." The times finally reports on the GP survey from last year! www.thetimes.com/uk/healthcar...
"It is concerning that the current government has picked up the baton of the previous government in ignoring the inconvenient truth that Long Covid presents." A good (long) article about the inquiry and righteous anger around Long Covid's handling. www.thereforme.uk/p/probing-an...
At its peak, there were over 120 Long Covid services nationwide, but now: - Only 46 have confirmed they will remain open. - 31 are under review. - 24 have already closed or are set to close. - 20 did not respond. www.longcovid.org/impact/news/...
"this unfortunate misreading and misattribution by others of an erroneous reference in the Background section of Lim et al.ās article, there is widespread underestimation of the true burden of ME/CFS" Argues for 71.2 million from Lim et al translational-medicine.biomedcentral.com/articles/10....
Today is my 5 year anniversary of #LongCovid. 1826 days of confinement to bed. The situation internationally for sufferers is worse today than it was 1 year ago with little new research funding and the clinics shuttering. There are still zero approved/working treatments.
The highest estimate of prevalence in healthcare workers I have seen, most of the studies are a bit older and often from 2023 whereas this is just under a year old survey. 60% is really concerning!
"These results suggest that HCWs in Portugal have a prevalence of the disease similar to that of the worldwide population" "Concerning performance at work, having two or more chronic diseases showed a trend towards lower performance, as well as extreme fatigue and cognitive dysfunction"
348 HCWs employed in Portugal. "223 participants (64.1%) reported a history of long COVID. Extreme fatigue was reported by 158 participants (57.0%), cognitive dysfunction by 118 participants (42.6%)" pubmed.ncbi.nlm.nih.gov/40084175/
5 short Stories of people still impacted by the pandemic - Long Covid and the impact it has on their partner - A mother with an autistic child due to education issues from lockdown - A fathers death -Someone CV - PTSD from all the deaths www.theguardian.com/world/2025/m...
"the leading reason for drugs to fail human safety tests has nothing to do with whether or not the drugs are safe; itās because the scientists run out of cash" "late-phase human experiments is called the āvalley of deathā." www.theguardian.com/news/2025/ma...
"two years after initial infection, 24.0% of 1,547 respondents reported ongoing Long COVID symptoms" "The ongoing burden of Long COVID and related disability is substantial and warrants increased attention by the public health and medical communities." www.ajpmonline.org/article/S074...
The study made that really clear in its abstract as well so it was an intentional lie by the people who did it. No one who read that research would come away thinking Long Covid and Vaccine injury were the same condition, because it contrasted them and showed differences!
This shows the problem with a memorial for something that is an ongoing event. The government has chosen for the crisis to be over but for the stretched healthcare system and the populace catching this virus the impact is more lives lost and disability for millions.
Based on nearly half a million international studies the likely count for Long Covid is much higher, something like 20 million is very likely when we look at all the outcomes. The rapid increase of a million disabled is no accident either, that is the ongoing impact of Covid.
Alas for many its not just the deaths that Covid caused by the crippling chronic illnesses that make up Long Covid. There is no memorial wall to the 3.1 million Long Covid sufferers nor any treatment as they and their families sufferer with no medical aid in darkened rooms.
There have been more excess deaths since the pandemic begun than the official count of deaths, nearly 300k excess deaths. These are also Covid deaths but not ones where the families were given the correct cause of death. The official count should be more like 550k.
Really bad title by the BBC "share your memories of lockdown.." š” but... "...a day of reflection on Sunday with 2025 marking five years since the start of the Covid-19 pandemic" The pandemic is still happening and still devastating many lives.š§µ www.bbc.co.uk/news/article...
"Early diagnosis, activity management (pacing) and avoidance of over-exertion (PEM) are key to preventing progression to severe disease."
"Therapies involving fixed increases in activity tend to worsen symptoms and risk a deteriorating course of the illness, rather than leading to improvement"
"The survey highlights profound disability levels and unmet needs among European ME/CFS patients. Findings underscore the urgent priority to recognise ME/CFS as a serious illness and provide better medical care, financial support, and social services"