Compilation for ME articles in 2023

[Kalliope]

Here's this year's compilation of ME articles from the media based on the weekly news briefs from the forum.

In 2019 it was 10 articles that made the list.
In 2020 it was 46
In 2021 it was 99
In 2022 it was 107

This year it's 128


January

• The Scotsman SNP ministers accused of turning their backs on Scots suffering from ME
• TV2 Blei sjukare etter vaksine: - Me vil berre bli tatt på alvor (Deteriorated after vaccine:- We just want to be taken seriously)
• Nettavisen Åpnet opp om ME-diagnosen - nå har Christine samlet inn 700.000 kroner til sykdommen (Opened up about the ME diagnosis - now Christine has fundraised 700 000 NOK for the illness)
• The Sydney Morning Herald ‘We’re all vulnerable’: One in 10 people will end up with long COVID, new study says
• RNZ Risk of debilitating illness from long Covid could grow - epidemiologist Michael Baker
• The Washington Post For long covid fatigue, a strategy called ‘pacing’ helps, but at a cost
• .Coda When the doctor doesn’t listen (by David Tuller)
• Texas Standard Long COVID can lead to chronic fatigue syndrome. Doctors are working to help patients manage.
• Science Friday Here’s What We Know About Long COVID, Three Years Later (Podcast)

February

• BBC Radio Scotland Parliamentary Debate about ME
• The Inverness Courier Highlands MSP calls for national guidelines on chronic fatigue syndrome
• Outside How Chronic Fatigue Syndrome Grounded a World-Class Climber
• Spiegel Er hatte sich aufs Sterben eingestellt - dann meldete sich eine Ärztin (He had prepared himself to die - the a doctor called)
• STAT The haunting brain science of long Covid (Opinion piece by E. Wesley Ely)
• Scientific American Long COVID Now Looks like a Neurological Disease, Helping Doctors to Focus Treatments
• The Conversation We got some key things wrong about long COVID. Here are 5 things we’ve learnt
• The Conversation We can learn a lot about long COVID from years of diagnosing and treating chronic fatigue syndrome
• Financial Times Why Long Covid rehab must be very, very slow
• Stuff Young woman fed through straw, lives in darkness with chronic fatigue syndrome after Covid
• Forskning no Mange alvorlig ME-syke er veldig dårlige og opplever å få lite hjelp (Many severe ME sufferers are very ill and feel they receive little help)

March

• New Scientist We’re starting to understand how viruses trigger chronic conditions
• CNN How to help friends and employees living with long Covid
• Rolling Stone Can an Addiction Drug Treat Long Covid?
• Medscape Treating Long-COVID Brain Fog With ME/CFS Guidelines
• Folkbladet ME-sjuka kritiserar havererade mottagningen: “Upplevde att de hade väldigt lite kunskap”(ME sufferers critical towards closed clinic: “Felt they had very little knowledge”
• Health Affairs Long COVID: Incidence, Impacts, And Implications
• Nature Long COVID exercise trials proposed by NIH raise alarm

 

[Kalliope]

April

• The Nation The Long Covid Revolution
• Isle of Man Today New service gives people ‘much-needed-hope’
• Medscape Doctor’s Checklist for Treating Long COVID Patients
• B.T. Julies læge truer med tvangsindlæggelse: ‘Han tror ikke på sygdommen’ (Julie’s doctor threatens with her being sectioned: ‘He doesn’t believe in the illness’
• WSWS A social and medical examination of Long COVID as a “mass disabling event”
• NRK ME-syke Iselin får ikke hjelp på helligdager - blir sengeliggende i påsken (ME-sufferer Iselin dosent receive help on holidays - will become bed bound during Easter)
• BR24 Post Covid bei Kindern: Forschung für Therapie (Post Covid in Hilden: Research into treatments)
• Stuff Mother’s devastation as daughters develop the same debilitating illness that can mean years in bed
• Democracy Now! The Long Haul: Millions with COVID Face Chronic Illness as Biden Declares End to National Emergency
• Svensk Dagbladet Karin Thunberg: Jag minst hennes vrede över okunskapen (Karin Thunberg: I remember her anger with the lack of knowledge)
• Nyhetsmorgon Ny forskning visar förändringar i hjärnan hos postcovidpatienter (New research shows brain changes in post covid patients)
• National Geographic For some long COVID patients, exercise is bad medicine

May

• JAMA How Primary Care Physicians Can Recognise and Treat Long COVID
• Nyhetsmorgon Cecilia fikk ME av halsfluss: “Som influensa hela tiden” (Cecilie got ME from tonsillitis: “Like having flu all the time”)
• TV2 Deler sykdommen på TikTok: - Følte meg levende død (Shares the illness on TikTok: - Felt I was a living dead)
• STV ‘I’ve battled ME my entire adult life - the help is still not there’
• Psychology Today COVID Long Haulers Protest in DC: “Pandemics Are Chronic”
• The Times Research into long COVID is crucial to get people working again
• Psychology Today A Case Definition for Long COVID
• National Geographic An overdose drug shows promise for long COVID patients
• Medpage Today Are We Ready for the Long COVID Long-Haul?
• TCW How long before the misery of ME is taken seriously?
• The Hill Why is the medical community still ignoring long COVID?
• The Washington Post An exercise trial for long covid is being criticised by some patients
• The Boston Globe Learning to treat long COVID could help those struggling with Chronic Fatigue Syndrome too
• Aerzteblatt ME/CFS-Forschung weiter fördern (More promotion of research into ME/CFS)

June

• The Times Thousands of ME patients ‘failed by shockingly poor NHS care’
• The Guardian Immunologist Akiko Iwasaki: “We are not done with Covid, not even close”
• The Washington Post For covid long-haulers, the pandemic is far from over
• Espreso (google translation from Serbian) Can’t sleep, do you feel constantly tired? Doctor Vesna reveals that it is a serious disease
• Svenska Dagbladet Postcovid-gåtan - varför sätts vissas liv på paus? (The post covid mystery - why are some people’s lives put on hold?)
• TCW Money’s the motive for calling ME a myth

 

[Kalliope]

July

• The Guardian Chronic fatigue guidance discouraging exercise is flawed, say researchers
• The Canary The Guardian has thrown the ME community under the bus, using bias and misinformation
• Tagesspiegel Mehr Hilfe für Long- und Post-Covid-Patienten: Lauterbach nimmt noch man Anlauf (More help for long and post-Covid patients: Lauterbach makes another attempt)
• The Times Our grief for Maeve is frozen in time by the wait for an inquest
• RNZ Prof Danny Altmann: the burden of long COVID
• Daily Maverick Collusion to exclude Long Covid - the long history of energy-limiting disability denial by insurance firms
• TV2 Kristine (29) er sengeliggande 23 timar i døgnet (Kristine (29) is bed bound 23 hours a day)
• The Atlantic Fatigue Can Shatter a Person

August

• Drug Discovery News Blood tests for chronic fatigue syndrome
• Nature microbiology editorial Connecting the dots from viral infection to disease
• The Times NHS told to stop blaming ME patients for being ill and improve care
• The Century Foundation A Paradigm Shift in Research for Infection-Associated Illnesses
• The Canary A disgraceful NHS trust just showed why people living with ME don’t trust medical professionals at all
• The Atlantic Fatigue Can Wreck You
• Science A protein that disrupts cell’s energy centers may be a culprit in chronic fatigue syndrome
• Science Alert This Protein Could Be Responsible For The Exhaustion in Chronic Fatigue Syndrome
• UK Research and Innovation Study shows women more severely affected by ME/CFS
• The Guardian Women with ME tend to have more symptoms than men, study suggests
• Sky News Women ‘suffer more from ME’ according to largest ever study into the disease
• Independent Women more severely affected by ME, study claims
• STV News Women more severely affected by ME, Edinburgh University study claims
• The Herald Women more severely affected by ME, study claims
• Se og Hør ME-ballade: Sundhedsminister Sophie Løhde kaldes i samråd (ME trouble: Minister of Health Sophie Løhde is called in for consultation)
• NPR It’s likely you know someone dealing with long COVID
• Science Alert Viral Origins of Chronic Fatigue Syndrome May Be Hiding in Plain Sight

September

• Australia ABC Why myalgic encephalomyelitis/chronic fatigue syndrome is nothing like everyday tiredness
• Health Affairs Despite Resistance, Policy Makers Push The Paradigm On ME/CFS And Long COVID
• Time Why You Should Rest - a Lot - If You Have COVID-19
• The Washington Post She wrote to a scientist about her fatigue. It inspired a breakthrough
• The Independent Major study hopes to tackle ME stigma
• STV World’s largest study of ME hopes to tackle ‘stigma’ of chronic fatigue
• B.T. Vagtlægen afviste Lines desperate opkald få dage før sin mands død: ‘Han blev svigtet af systemet’ (The doctor on call rejected Line’s desperate phone call few days before her husband’s death: ‘The system failed him’)
• Science Alert New Blood Test For Chronic Fatigue Syndrome Has 91% Accuracy
• NPR Unraveling long COVID: Here’s what scientists who study the illness want to find out
• Forskning no Bergen-forskere får millioner til ME-forskning (Bergen researchers receives millions for research into ME)

 

[Kalliope]

October

• Mediarun Search Chamber approves project establishing SUS care guidelines for fibromyalgia (in Brazil)
• National Geographic What is POTS?
• Advances Science News First ever diagnostic test for chronic fatigue syndrome sparks hope
• Sveriges Radio Marita är sängliggande 20 timmar per dygn - nu ändras vården (Marita is bed bound 20 hours a day - now care is changing)
• Sveriges Radio ME-läkaren rasar mot slopad privatvård: “Ett dråpslag” (The ME doctor furious over abandoned privat care: “A fatal blow”
• TVS Hun har ikke forladt sin seng i syv år, men nu er der hjælp på vej (She has not left her bed for seven years, but now help is on its way)
• Chemistry World Battling long Covid with drugs
• Yale School of Medicine $3 Million Donor Gifts to Yale School of Medicine Help to Advance Research on ME/CFS, Long COVID, and Chronic Lyme Disease

November

• CNN The Long Journey to Treat the Long Covid Brain (Podcast)
• Scientific American What Tony Fauci Told Me About Long COVID and Other Postviral Illnesses
• IOL Pyjama picnic for those with chronic illnesses will be sick
• SN Tiotusentals svenskar drabbas av osynlig epidemi (Tens of thousands of Swedes suffer from an invisible epidemic)
• NRK ME-syke Heidi konfronterte Nakstad (ME sufferer Heidi confronted assistant director of the Norwegian Directorate for Health and Social Affairs)
• Braintree & Witham Times Witham author Jessica Taylor-Bearman releases third book
• Iltalehti Edellisenä päivänä Nikoa, 32, huimasi työpaikalla – Seuraava olikin viimeinen: ”99,9 prosenttisesti vuodepotilaaksi” (One day, Nikoa, 32, was dizzy at work, the next he was 99,9 percent bedridden)

December

• New Scientist Long covid: What we now know about its causes and possible treatments
• The New York Times How Viral Infections Cause Long-Term Health Problems
• Technology Networks Long COVID Research Is a Bit of a Mess
• RNZ Unsupported and isolated: living and dying with ME/CFS
• Frankfurter Allgemeine Jonas braucht 20 Stunden Schlaf, Jeden Tag (Jonas sleeps 20 hours a day)
• Mitt i Stockholm Andra patienter får vård på postcovidmottagningen (Other patients receive care at the post covid clinic)
• The New York Times 1,374 Days - My life with Long COVID
• The New York Times Reporting on Long Covid Taught Me to Be a Better Journalist
• Harvard Health Publishing Chronic fatigue syndrome is rising
• Harvard Business manager There Is Money in Prevention
• KTSP News No treatment, no cure: Patients await answers about debilitating disease related to long COVID
• Medical News Bulletin The ME/CFS Myth
• BBC Daughter’s death ‘could have been avoided’
• Medscape New Research Aims to Unravel Both ME/CFS and Long Covid
• Medical News Bulletin Ask the Expert: The ME/CFS Mystery
• B.T. Alvorlig syge Birgitte har ikke været i bad siden april: ‘Mit største juleønske er at få den rette behandling” (Severely ill Birgitte hasn’t had a shower since April: ‘My biggest wish for Christmas is to get the right treatment’)
• mtv uutiset Niko, 32, elää sängyn omana, käy vessassakin vain kolmesti viikossa: "Minut nähdään eläkeyhtiössäni täysin työkykyisenä" (Niko, 32, lives in bed, only goes to the bathroom three times a week: “I am declared fit for work by the insurance company”)
• ABC News Long COVID will take your health, your wealth - then it will come for your marriage
• Yahoo! News Council responds to billboard criticism from long Covid campaigners

 

[Andy]

Thanks for compiling this list Kalliope. Many of those links, for example the last three above, seem to point to the Apple site though - is that the same for anybody else?

 

[Kalliope]

Thanks for compiling this list Kalliope. Many of those links, for example the last three above, seem to point to the Apple site though - is that the same for anybody else?

Oh dear. Thanks for letting me know! Something must have gone wrong when copy and pasting from a document. Will edit!

ETA: Links should be working now. Sorry about that

 

[Simon M]

these are amazing results, and show the value of all the effort to compile the news and brief.

out of interest, are they based on links back to the news in brief page?

 

[DokaGirl]

Hi @Kalliope

Thanks very much. This confirms my thoughts that ME is getting more coverage.

I haven't gone over the list to see how many are evidence based vs. the number from a biopsychosocial bias.

 

[Kalliope]

out of interest, are they based on links back to the news in brief page?

sorry. my brain is a bit fried, so perhaps I misunderstood your question, but yes, they are based on the news in brief archive. I just go through them and pick out articles where ME is featured. So the articles have to have been shared on the forum and mentioned in the news brief

 

[Kalliope]

I haven't gone over the list to see how many are evidence based vs. the number from a biopsychosocial bias.

I skipped most of the BPS articles
ETA They weren't that many

 

[DokaGirl]

I skipped most of the BPS articles
ETA They weren't that many

Great, thank you!

 

[Simon M]

sorry. my brain is a bit fried, so perhaps I misunderstood your question, but yes, they are based on the news in brief archive. I just go through them and pick out articles where ME is featured. So the articles have to have been shared on the forum and mentioned in the news brief

Sorry, I had completely misunderstood things, but it’s still very good news!

 

[rob wijbenga]

I skipped most of the BPS articles
ETA They weren't that many

that's a good sign as well