80 nyheter til deg som vil oppdatere deg på siste nytt om ME og Long Covid i løpet av romjulen.
Det siste året har jeg laget flere samleposter om ME og Long Covid på MillionsMissing Stavanger (MMS) på Facebook, da nyhetsmengden er blitt så stor. Denne samleposten inneholder hele 80 nye artikler, studier og andre nyheter fra 28/11 – 27/12 2023 som ikke er delt på MMS tidligere.
Oversikten dokumenterer litt av nyhetsbildet da helseministeren utnevnte Guri Rørtveit til ny direktør for Folkehelseinstituttet, 20. desember 2023. Rørtveit tilhører miljøet som psykologiserer virusutløste sykdommer, men mer om det i en separat bloggpost.
Fortsatt god jul. 🙂
Hilsen Sissel
28. november 2023
1
UK: “ME Association Research Review: Mortality in ME/CFS”
Den britiske ME-foreningen rapporterer om antall døde ME-pasienter.
“In May 2023, the ME Association requested the latest mortality data from the Office for National Statistics (ONS) and discovered that between 2001 and 2021, 150 deaths in England and Wales were partly or fully attributable to ME/CFS.”
30. november 2023
2
Østerrike: “Immunological Patient Stratification in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”
Ny studie (preprint = ikke fagfellegodkjent enda). Målet var å belyse sammenhengen mellom immunsystemet og tarmbarrierefunksjonen hos ME-pasienter.
“We found reduced complement protein C4a levels in immunodeficient ME/CFS patients suggesting a sub-group specific innate immune dysregulation.”
1. desember 2023
3
UK: “All my wife wants is for her torture to end – dying is the only way”
The Daily Mail skriver om firebarnsmoren Kelly Louise (39), som har vært sengeliggende med Long Covid og ME i over 18 måneder.
“It has now gotten so bad that the 39-year-old, from Chipping Sodbury, Gloucestershire, has ‘reached the point where dying would end her suffering’.”
3. desember 2023
4
Sverige: “Ameliekliniken i Solna massmedicinerar långtidssjuka: ”Livsfarligt”
Den første av fire artikler og TV-innslag om en privat klinikk som tilbyr eksperimentell medisinering mot ME og Long Covid.
“Nu har två patienter anmält läkaren till Inspektionen för vård och omsorg, och SVT:s granskning visar att många fler patienter upplevt biverkningar.”
Tillegg: Bloggeren Mitt Eremitage oppsummer fire artikler: “SVT granskar ME-klinik i flera artiklar”
4. desember 2023
5
Kina: “Small study finds brain alterations after COVID Omicron infection”
University of Minnesota oppsummerer en studie, publisert 30/11/23.
“Researchers in China report thinning of the gray matter and other changes in certain parts of the brain in 61 men after COVID-19 Omicron infection.”
5. desember 2023
6
Australia: “Could antivirals reduce your risk of long COVID?“
Artikkel fra The Conversation.
“In one study, nirmatrelvir and ritonavir, known as Paxlovid, was associated with a 26% reduced risk of developing long COVID.”
6. desember 2023
7
Romania: “Gut Microbiota and Mitochondria: Health and Pathophysiological Aspects of Long COVID”
Kunnskapsoppsummering basert på 141 referanser:
“Recent data highlighted in this review have revealed that the persistence of SARS-CoV-2 and dysfunctional mitochondria in organs such as the heart and, to a lesser extent, the kidneys, liver, and lymph nodes, long after the organism has been able to clear the virus from the lungs, could be an explanation for LC.”
8
UK: “Long Covid Groups Launch Campaign to Coincide with Boris Johnson’s Appearance at the Covid Inquiry”
Kick-start for kampanjen #ItCouldHappenToYou i regi av LongCovidGroups.org, og ifm. høring av tidligere statsminister Boris Johnsons håndtering av pandemien.
Brev til nåværende statsminister ble overlevert til No. 10 Downing Street; “Urgent Investment for Long Covid: Call to Action for Prime Minister Rishi Sunak”
Varebil med storskjerm viste kampanjevideo i Londons gater. Se video på X.
Bilder er kopiert fra Long Covid SOS på X (1 og 2)
9
UK: “Johnson says ‘sorry’ – but ONLY for getting caught calling Long Covid ‘b*llocks’”
The Canary skriver om høringen nevnt over.
“Boris Johnson’s first day at the Covid Inquiry was underscored by his inability to apologise to long Covid patients properly – summing up his arrogance and contempt for most of the public.”
10
UK: “Johnson’s appearance at the Covid Inquiry is more ‘b*llocks’ says Long Covid campaign group“
Oppfølgingsartikkel i The Canary.
“No protection, no warning, and now no cure”
11
Nederland: “Dutch Survey Respondents Rate GET/CBT as “the Worst” Approach, Per New Report!”
Helsejournalist David Tuller (USA) skriver om en spørreundersøkelse, besvart av over 1500 ME-pasienter, som fant at gradert trening (GET) er den verste behandlingen.
“In other words, patients under the care of Professor Knoop’s center, which champions the GET/CBT approach, were presumably among the survey respondents. Even so, the survey found those treatments to be “the worst” approaches to care.”
Tillegg: Prof. Knoop deltok på det “hemmelige seminaret” og har signert “Oslo-erklæringen”
7. desember 2023
12
Nådeløs oppfølgingsartikkel i The Canary om britiske psykiatere, som startet psykologiseringen av ME på 80-90-tallet.
“Their self-serving self-importance, coupled with a misplaced yet arrogant belief in their own abilities and ideas, make them dangerous to the rest of us. ME and Gulf War syndrome patients can testify to this – and sadly now, long Covid patients can, too.”
13
Irland: “Government must recognise long COVID as a prescribed illness”
Politiker Dennis Naughten på X:
“Today I called for Government to recognise #longCOVID as an official prescribed illness as this will open up supports for those out of work long term.”
14
UK: “Do viruses cause ME/CFS – what does the evidence say?”
ME Research UK kommenterer studier på ME og virus.
“At the recent Immunology webinar for the NIH ME/CFS Research roadmap series, Dr Nancy Klimas highlighted the association between viruses and inflammation in the body. Inflammation, particularly in the brain, is thought to play an important role in ME/CFS.”
8. desember 2023
15
USA: “Getting Sick All the Time? Don’t (Necessarily) Blame COVID-19”
Artikkel i TIME:
“Many scientists also think that chronic Long COVID symptoms could be a sign of immune dysfunction, and recent research suggests people with Long COVID are more likely to get reinfected by SARS-CoV-2 than people who fully recover.”
16
USA: “Who Has Chronic Fatigue Syndrome in the U.S.?”
Artikkel i U.S. News:
“New research pegs the recent prevalence of what’s often called chronic fatigue syndrome at about 1% among U.S. adults…”
17
Canada: “NIH Scientists discover biological basis for ME/CFS symptoms”
Artikkel i Medical News Bulletin om funn av et nytt protein (WASF2) som påvirker cellenes energiproduksjon (publisert 14/8/23).
“For decades, physicians prescribed psychotherapy and exercise programs that were inappropriate or actively harmful to their condition”
18
Australia/UK: “In vitro B cell experiments explore the role of CD24, CD38 and energy metabolism in ME/CFS”
Ny studie fant forstyrret energiomsetning.
“Disturbances in energy metabolism in ME/CFS B cells were thus confirmed in a dynamic in vitro model, providing the basis for further mechanistic investigations.”
19
Britiske forskere har evaluert mikrobiomet i tarmen til ME-pasienter og friske husholdningsmedlemmer.
“Key features are the identification of a core virome comprising tailed phages of the class Caudoviricetes, and a greater diversity of DNA viruses including extracellular phages and integrated prophages.”
20
USA: “Experimental drug that alters gut microbiome shows promise for long-COVID relief”
University of Minnesota oppsummerer en ny studie fra Hong Kong, publisert 7/12/23.
“Although alleviation of some symptoms of PACS was observed, this alleviation did not correspond with measurable improvements in quality of life or physical activity after 6 months…”
21
Tyskland: “Implications of the quality of the doctor-patient relationship on health in adult ME/CFS patients”
Tysk studie om forholdet mellom leger og ME-pasienter (DP), oversatt til engelsk.
9. desember 2023
22
Ny studie (preprint):
“Long COVID is associated with reduced measures of exercise performance and skeletal muscle oxidative capacity in the absence of evidence of microvascular dysfunction, suggesting mitochondrial pathology.”
23
Tyskland: “Koronavarsel fra Lauterbach“ (oversatt)
Den tyske helseministeren advarer om sykdomsbølge i julen.
“Korona er fortsatt farlig. Det er ikke en forkjølelse som du trygt kan få hver sesong. Snarere påvirker det blodårene eller svekker immunsystemet, noe som betyr at det ofte ikke kan helbredes fullstendig.” (oversatt)
24
New Zealand: “Unsupported and isolated: living and dying with ME/CFS”
Radioinnslag om britiske Maeve Boothby-O’Neill (27), som døde i 2021. Det er intervju med faren Sean O’Neill og prof. Warren Tate, ledende ME-forsker i New Zealand.
“An inquest hearing in the UK has heard how 27 year old Maeve Boothby-O’Neill died from complications relating to ME, following years of inadequate care from the National Health Service.”
25
Artikkel om ME, ensomhet og isolasjon i Sociology of Health & Illness.
10. desember 2023
26
UK: “Swindon campaigners with long Covid put up billboard”
Artikkel i lokalavis.
“A group of campaigners suffering from long Covid in Swindon have put up billboards demanding justice.”
Tillegg: Det er blitt hengt opp 23 store plakater om Long Covid og ME i UK, USA og Canada, hvorav 11 i UK.
11. desember 2023
27
Studie på pasienter som oppsøkte en Long Covid-klinikk fra juni 2021 – mai 2022.
“Although we did not directly screen for ME/CFS, based on survey responses, we estimate that at least 60% of our cohort would meet the diagnostic criteria.”
28
USA: “Long-COVID brain changes detected by advanced MRI technology”
Vitenskapsmagasinet Earth skriver om en svensk studie, publisert 22/10/23.
“Using advanced MRI technology, the team has uncovered notable differences in brain tissue structure between patients who have had severe COVID-19 and those who have not.”
29
USA: “What is chronic fatigue syndrome?”
Artikkel i New York Post:
“Because there’s no known cure for ME/CFS, medical professionals advise that people living with the disease try “pacing” their activity level to avoid post-exertional malaise.”
30
Australia: “‘We need to find a treatment’: World-leading researcher’s long COVID plea”
Artikkel i tidsskriftet til den australske legeforeningen (RACGP), NewsGP:
“Long COVID is a chronic, multi-system disease already affecting tens of millions of people around the world.”
Tillegg: IOM-rapporten (USA, 2015) og NICE Guideline for ME/CFS (UK, 2021) bruker samme beskrivelse om ME.
12. desember 2023
31
USA: Amerikanske helsemyndigheters ME-konferanse 2023
Konferansen gikk over to dager (12-13. desember) og hadde tittelen: “Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID”
Opptak av dag 1 og dag 2 er nå tilgjengelig. Agenda.
32
Liten pilotstudie på 6 Long Covid-pasienter og 5 friske kontroller. Resultatet ble sammenlignet med et tidligere datasett på 9 ME-pasienter.
“There were overlapping protein clusters and enriched molecular pathways particularly in immune functions, suggesting the two conditions have similar immune pathophysiology as a prominent feature, and mitochondrial functions involved in energy production were affected in both conditions.”
33
Norge: “Stortinget forbyr konverteringsterapi”
13 år etter en norsk psykolog sammenlignet Lightning Process med konverteringsterapi for homofile, ble sistnevnte forbudt av Stortinget.
Renate Øvreseth (sykepleier og jordmor, nå ME-syk) fulgte opp med et viktig innlegg på Facebook:
“Men når politikerene først er på ballen – kan vi også kvitte oss med lignende skadelige praksiser, som Lightning Process??”
34
USA: “What is Post-Exertional Malaise (PEM)?”
RTHM, en medisinsk klinikk som har spesialisert seg på Long Covid og ME, deler en artikkel om PEM på X. PEM er kardinalsymptomet på ME.
13. desember 2023
35
Norge: “Nyhetsbrev 15”
Årets siste nyhetsbrev fra ME-foreningen.
“Ny studie om behandling for ME og PEM, ME-fondet støtter to viktige prosjekter, og en juridisk gjennomgang av en trygderettssak.”
36
Sverige: “Mottagning tar emot fler postinfektiösa tillstånd”
Sykehus i Stockholm utvider Long Covid-klinikk til å inkludere virusutløst ME.
“Från och med den 15 december breddar postcovidmottagningen på Karolinska sjukhuset Huddinge sitt uppdrag till att inkludera andra postinfektiösa tillstånd, såsom misstänkt Myalgisk Encefalomyelit/Kroniskt trötthetssyndrom (ME/CFS). Mottagningen byter namn till Mottagning Postinfektiösa sjukdomar.”
37
Danmark: Brev til nytt Underudvalg
Danske helsemyndigheter har nedsatt et nytt underutvalg, som skal arbeide med ME-feltet. I forkant av deres første møte ble det sendt et åpent brev, som er delt av Vibeke Ilsøe på FB:
38
Canada: “No one I know has Long Covid”
Artikkel fra John Snow Project.
“According to the Canadian data, since summer 2022, an additional 2 million people have developed Long Covid”
39
Afrika: “8.6% Of COVID-19 Survivors In Africa Still Grapple With Symptoms”
Artikkel fra Leadership.
“‘Researchers pooled results from 25 studies across African nations, involving 29,213 participants, and discovered a 48.6 per cent incidence of Long COVID symptoms'”
40
USA: “Impacts of SARS-CoV-2 infection on brain, immunity, and metabolism”
Det 28. seminaret i serien “Recover Research Review (R3) i regi av RECOVER. Dr. Avinda Nath (NIH), som forsker på både ME og Long Covid, er del av panelet.
Amerikanske helsemyndigheter (NIH) etablerte RECOVER i 2021 for å lære om senskader fra Covid.
14. desember 2023
41
Europa: “Long-COVID-19: the persisting imprint of SARS-CoV-2 infections on the innate immune system”
Forskere fra Nederland og Tyskland kommenterer en immunstudie på Long Covid, som ble publisert 31/8/23.
“The results by Cheong et al. constitute an important step towards understanding, preventing, and eventually treating the adverse consequences of an ill-trained innate immune system”
42
UK: “The incredible story of the PACE trial for ME/CFS | Introduction”
Katie Johnstone har oppsummert den britiske PACE-studien.
“Much has already been written about the PACE trial, but I wanted to create a brief and comprehensive overview of this story which doesn’t assume the reader has any prior knowledge.”
15. desember 2023
43
UK: “Mye kan være likt mellom lang forkjølelse og long covid”
Flere medier skriver om en ny studie på Long Covid versus influensa, inkl. Forskning.no – som også trekker inn den kontroversielle LC-studien til Wyller (se bildet).
“Long-term effects from influenza affect the respiratory system, long COVID is multisystemic” – MEDPAGE TODAY
“Influenza, as well as other common viruses like Epstein-Barr (which causes mononucleosis), have long been thought to trigger myalgic encephalomyelitis/chronic fatigue syndrome, a post-infectious illness that shares many symptoms with Long COVID.” – TIME
“We need to wake up to this reality and stop trivialising viral infections and understand that they are major drivers of chronic diseases.” – The Guardian
16. desember 2023
44
Spansk studie (preprint) kunne skille mellom ME og Long Covid-pasienter.
“Our findings revealed that combining biomarkers of endothelial dysfunction and inflammation with outcome measures differentiate ME/CFS and Long COVID using robust discriminant analysis of principal components.”
17. desember 2023
45
USA – “Innovations in Long-COVID Treatment – the PolyBio Fall Symposium”
Health Rising oppsummerer PolyBio sin Long Covid-konferanse i høst.
“Long COVID is spurring new ways to research, understand, and treat diseases – ways we haven’t seen before in ME/CFS.”
18. desember 2023
46
USA: “Cliff Richey’s Five-Set Match With Long COVID”
World Tennis Magazine forteller om en tidligere tennisstjerne, som har vært mer eller mindre sengeliggende i 3 år på grunn av Long Covid.
“Until recently, I have been in bed 18 hours a day for most of the last three years. (…) There are no words for me to describe the horror of this disease.”
47
USA – “No treatment, no cure: Patients await answers about debilitating disease related to long COVID”
Artikkel og TV-innslag om ME og Long Covid på KSTP-TV.
“ME/CFS can be contracted after a range of viral infections. It’s been around far longer than COVID-19, but its symptoms, in recent years, have been recognized as one of the more severe cases of long COVID.”
Tillegg: 2 min. videosnutt på X
19. desember 2023
48
USA: “Study helps explain post-COVID exercise intolerance”
Medical Express om en ny iCPET-studie ved Yale, som ble publisert 15/12/23.
“We found that despite the fact that the heart was pumping oxygenated blood that the lungs were providing adequate amounts of oxygen for, the extraction of oxygen by the body’s tissues was compromised in patients who had symptoms of exercise intolerance after COVID,” said Peter Kahn, a pulmonary and critical care fellow at Yale School of Medicine and lead author of the study.”
Pressemelding: “Study helps explain post-COVID exercise intolerance”
49
USA: “Chronic fatigue syndrome is rising”
Artikkel i Harvard Health Publishing:
“More than three million Americans struggle with chronic fatigue syndrome, says the CDC. Here’s one story of living with it.”
50
Nytt forskningsprosjekt.
“This project is important as it aims to address the underlying causes of ME/CFS and establish the relationship between infections and declining immune function and immune insufficiency which is present in many patients.”
51
UK: “Long covid: where are we, what does it say about our pandemic response, and where next?”
Innlegg i British Medical Journal (BMJ) fra Daniel M Altmann, professor i immunologi ved Imperial College London og prof. Christina Pagel.
“- … the slow, rumbling ruin of lives, healthcare planning, and economies by years or decades of chronic disease is perhaps harder to grapple with and easier to kick down the road for some other, future administration.”
20. desember 2023
52
UK: “In around 60% of cases, long Covid patients fulfull ME/CFS criteria”
Dr Mark Vink svarer på overnevnte innlegg i BMJ:
“What a shame that the medical profession has been psychologising post infectious diseases like ME/CFS for decades. If we had taken them seriously as we should have, then by now we would have had many different effective pharmacological treatments for Long Covid..”
53
USA: “A Bad Blood Vessel – Neuroinflammation Connection Shows Up in Long COVID”
Health Rising skriver om en ny studie (preprint) på Long Covid, som ble publisert 20/10/23.
” A recent PolyBio Research Foundation study assessed both neuroinflammation in the brain and factors associated with blood vessel damage. The study found evidence of widespread neuroinflammation in long COVID in several areas of particular interest for ME/CFS.”
54
Danmark: Helseministeren svarer på skriftlig spørsmål
Helseministeren svarer på spørsmål om hvordan deres planlagte gjennomgang av internasjonal ME-forskning vil foregå:
“Der er enighed med styrelsen om, at ME-foreningen skal inddrages i både indhold og proces for vidensafdækningen, og foreningen vil ligeledes blive inddraget i
overvejelserne om, hvilke eksterne leverandører der vurderes egnet til at
gennemføre vidensafdækningen.”
55
Canada: “WASF3 disrupts mitochondrial respiration and may mediate exercise in ME/CFS”
Artikkel i Medical News Bulletin. Skjermbilde:
21. desember 2023
56
Norge: “Strid om norsk ME-studie. Hva viser den egentlig?”
Forskning.no valgte å publisere en artikkel som sår tvil om Fafo/SINTEF sin studie om ME-sykes erfaring med helsetjenesten tre dager før julaften. Kritikerne er Nasjonal (in)kompetansetjeneste for CFS/ME, som bærer hovedansvaret for studiens nedslående resultat.
Det er ikke verdt å ødelegge julen ved å lese artikkelen. Les heller kommentarfeltet på FB.
57
USA: “2023 NIH Research Highlights – Promising Medical Findings“
Amerikanske helsemyndigheter (NIH) har inkludert forskning på ME og Long Covid i oppsummeringen av årets høydepunkt:
“Immune and hormonal features of Long COVID“
“Protein may be linked to exercise intolerance in ME/CFS“
58
USA: “Understanding chronic fatigue syndrome”
8 minutters innslag på KSL News Radio, intervju med Bateman Horne Center.
“One of the most important aspects of MECFS is something called post-exertional malaise,” she said. Bell described post-exertional malaise as a disorder of cellular energy production. It’s unique to people with chronic fatigue syndrome.”
59
Tyskland: “Post-covid: Mysteriet for leger og forskere” (oversatt)
Avisen Aerztezeitung har snakket med prof. Carmen Scheibenbogen i etterkant av en tysk konferanse om pandemien og Long Covid, 17-18. november 2023.
“En av de mest alvorlige formene for syndromet er myalgisk encefalomyelitt/ kronisk utmattelsessyndrom (ME/CFS). Før pandemien ble mellom 150.000 og 300.000 mennesker rammet, ifølge Scheibenbogen, men covid-19 har økt forekomsten kraftig; For tiden tilskrives omtrent to tredjedeler av alle ME/CFS-tilfeller covid-infeksjon.” (oversatt)
60
USA: “New Research Aims to Unravel Both ME/CFS and Long COVID”
Artikkel i Medscape oppsummerer NIHs forskningskonferanse 12-13. desember 2023. Den er allerede delt på MMS, men føyer til journalistens tilleggsinfo. på X:
Samt Dr. Walter Koroshetz sin deling av artikkelen på X.
Koroshetz er direktør for nevrologiske sykdommer i NIH.
22. desember 2023
61
USA: “Monoclonal Antibodies: A New Treatment for Long COVID?”
Medscape oppsummerer en studie, publisert 8. november 2023:
“The study (…) found three Florida patients with long COVID made complete — and sudden — recoveries after they were given the monoclonal antibody cocktail casirivimab/imdevimab (Regeneron).”
62
Østerrike: “Urine Metabolite Analysis to Identify Pathomechanisms of Long COVID”
Pilotstudie på 25 LC-pasienter, 8 ME-pasienter og 8 friske kontroller.
“Conclusively, our results suggest that amino acid metabolism and neurotransmitter synthesis is disturbed in patients with LC and ME/CFS. The identified metabolites and their associated dysregulations could serve as potential biomarkers…”
63
UK: “ME Association Research Review: Post-Exertional Malaise (PEM) in ME/CFS and Long Covid”
Dr. Katrina Pears, Research Correspondent ved ME Association, har laget et omfattende hefte om forskning relatert til Post-Exertional Malaise (PEM). Kan også lyttes til.
“The evidence from the studies reviewed shows that people with ME/CFS have a different response to exercise than healthy controls, and the findings could be the reasoning behind experiencing PEM and exercise intolerance…”
64
UK: “ME/CFS Research Published 12 – 18 December 2023”
ME Association sin ukentlige oppsummering av forskning på ME og LC.
“It’s been an exceptionally busy week for research. There has been a huge variety in studies this week, with twelve new ME/CFS studies and thirty new Long Covid studies this week.”
65
UK: “Long Covid patients slam the UK Medical Research Council’s lack of response to billboard campaign”
Den britiske gruppen “Not Recovered UK” har i høst hengt opp flere store plakater i ulike byer, med krav om mer forskning på ME og Long Covid.
The Canary skriver om kampanjen og det medisinske forskningsrådet (MRC) sin respons på plakaten som ble satt opp i nærheten av deres kontor.
“For the MRC to effectively do a copy and paste job from its website as a response to chronically ill people paying for their own campaign because, in part, of the MRC’s lack of funding for research is staggering.”
Tillegg: “Billboards for LC/MECFS” på X
23. desember 2023
66
USA: “The Itaconate Shunt Hypothesis – Could it Explain the Energy Problems and PEM in ME/CFS?”
Health Rising oppsummerer Janet Dafoes intervju med Robert Phair i 2022.
“The Itaconate Shunt hypothesis is compelling because it potentially ties together an infectious insult, a hit to the energy production system, brain fog, post-exertional malaise, and immune dysfunction”
24. desember 2023
67
Tyskland/USA: “Assessing symptoms of long/post COVID and chronic fatigue syndrome using the DePaul symptom questionnaire-2“
Studie med 502 tyske deltagere, fra prof. Leonard Jason (USA) et al.
“A visual comparison of the symptom profiles of individuals with a confirmed diagnosis of ME/CFS (n = 186) versus LC/PC (n = 54) revealed a great overlap.”
68
UK: “Healthcare utilisation in people with long COVID”
Britisk studie (preprint) om bruk av helseressurser blant 52 988 LC-pasienter vs 264 867 uten LC.
“In the 12 months post-diagnosis, there was strong evidence that those with long COVID were more likely to use healthcare resources, and have 49% more healthcare utilisation. Our model estimated that the long COVID group had 30 healthcare visits per year..”
69
Avisen B.T. skriver om Birgitte, som har vært sengeliggende med ME og POTS siden 2017.
“Træningen forværrede hendes tilstand i en sådan grad, at hun blev lænket til sin seng 24 timer i døgnet, hvor hendes mand passer hende i dag, forklarer hun.”
70
USA: “Julie Rehmeyer on the Heartbreaking Loss of Beth Mazur”
Lille julaften ble det kjent at Beth Mazur er død, etter 15 år som ME-syk. Neste dag skrev Julie Rehmeyer om den siste tiden de fikk sammen, på Facebook og Twitter – gjengitt på David Tullers blogg. Det var Julie som fant henne død. ❤
Beth var en av grunnleggerne av MEAction og MillionsMissing-bevegelsen.
26. desember 2023
71
Australia: “Long COVID will take your health, your wealth — then it will come for your marriage”
ABC News har snakket med pasienter, pårørende og fagpersoner, deriblant prof. David Putrino. Artikkelen nevner også ME.
“I don’t know how to be more clear about how much of an existential threat this is, but it doesn’t seem to be getting through — we still seem to be in this denial phase of ‘othering’ the illness,” Dr Putrino says.”
72
UK: “Impact of Long COVID on productivity and informal caregiving”
Britisk spørreundersøkelse basert på 366 LC-pasienter (8/8/22 – 13/2/34).
“LC has major impacts on productivity and informal care needs. The high national prevalence of LC likely implies substantial monetary values of over £5.7 billion from productivity losses and £4.8 billion from informal caregiving costs.”
73
USA: “Long Covid advocates send “unhappy holiday” cards to their representatives”
Postkort-kampanje rettet mot myndighetene i USA:
“She called for Long Covid funding as well as increased ME funding from the NIH, which has historically had some of the lowest funding comparable to disease burden.”
74
USA: “Framing the activists: gender, race, and rhetorical disability in contested illnesses“
Forskningsartikkel fra Vox Jo Hsu (PhD MFA) med 135 referanser. Sitat fra X:
“My new article on how psychosomatic explanations of #MECFS and #longCOVID rely on misogynistic, racist, and ableist logics that adapt to criticisms and find new disguises as seemingly “objective” research.”
75
UK: “FITNET-NHS Trial Findings”
Britisk studie på kognitiv adferdsterapi på ME-syke barn fra LP-forsker Ester Crawly. Oppsummering.
“FITNET-NHS (online CBT) is unlikely to be cost-effective compared to online Activity Management within the first 12-months.”
Tillegg: Stephen skriver på X:
27. desember 2023
76
Canada: “Every COVID Infection Increases Your Risk of Long COVID, Study Warns”
Science Alert skriver om en studie fra Canada, publisert 8/12/23.
“The study adds to a growing body of evidence around the association between COVID-19 reinfection and the reporting of long-term symptoms…”
77
UK: “Medical Research Council responds to long-Covid criticism”
Oppfølgingsartikkel i Swindon Advertiser, ref. kritikk i The Canary 22/12/23.
“According to the research council, MRC and NIHR have since 2020 collectively awarded more than £50 million for research on ME/CFS and long Covid.”
78
UK: “Study shows COVID leaves brain injury markers in blood”
University of Minnesota (USA) oppsummerer en britisk studie, publisert 22/12/23. Pressemelding.
“These brain injury markers are associated with dysregulated systemic innate and adaptive immune responses in the acute phase of the disease, and suggest that these may represent targets for therapy,” the authors said.”
Salon om samme studie: “Brain damage caused by COVID-19 may not show up on routine tests, study finds”
79
World: Science for ME sin ukentlige oppsummering av ME- og Long Covid-nyheter, fra og med 18/12/23; News in Brief.
80
USA: Dr. Walter Koroshetz hedrer avdøde Beth Mazur på X (nevnt over).
“… courageous advocate for research to help those suffering with ME…”
Slik beskrives ME-forkjempere i det amerikanske folkehelseinstituttet. ❤
Life with ME by Sissel 