Sign in

Ramses Temmerman

@ramsestemmerman.bsky.social
158 followers 273 following 132 posts

Former DJ/Event Manager | Administrator #MEcvs Infokanaal (Youtube) | Advocate for more biomedical research for post-infectious #MEcfs & #LongCovid | 🇧🇪 🇪🇺

PostsRepliesMedia
Ramses Temmerman @ramsestemmerman.bsky.social · 01/10/2026
'Long Covid Belgium roept de overheid op om bijkomende maatregelen te nemen tegen de verspreiding van covid. De patiëntenvereniging wijst op de actuele hoge viruscirculatie en waarschuwt voor nieuwe gevallen van #LongCovid.'
artsenkrant.pmg.be
Long Covid Belgium vraagt extra maatregelen tegen covid
Long Covid Belgium roept de overheid op om bijkomende maatregelen te nemen tegen de verspreiding van covid. De patiëntenvereniging wijst op de actuele hoge viruscirculatie en waarschuwt voor nieuwe ge...
140
Ramses Temmerman @ramsestemmerman.bsky.social · 30/09/2026
"De regering-De Wever hoopt flink te besparen op de invaliditeitsuitkeringen. Een nieuwe studie bewijst hoe rampzalig dat plan is." "Politici liegen als ze zeggen dat honderdduizenden #langdurigzieken in de invaliditeit van vandaag op morgen weer aan het werk kunnen." www.knack.be/nieuws/belgi...
195
Reposted by Ramses Temmerman
Anil van der Zee @anilvanderzee.bsky.social · 28/09/2026
Almost nine out of ten people with #LongCovid do not fully recover from their symptoms. They have to learn to live with them. This is shown in a study by researchers from Frisius MC and the UMCG in Groningen. For the study, 1,200 people were followed over the past three years. #PAIS #pwme
33417
Reposted by Ramses Temmerman
Ntisec @ntisec.bsky.social · 28/09/2026
NL Onderzoek @umcgroningen.bsky.social Grootste deel post-covidpatiënten wordt nooit meer beter. #LongCovid #MEcvs #PAIS www.omropfryslan.nl/nl/nieuws/18...
omropfryslan.nl
Grootste deel post-covidpatiënten wordt nooit meer beter
Duidelijk wordt dat van de groep patiënten maar ruim 1 op de 10 volledig herstelt. De rest houdt klachten en werkt minder of niet meer.
43014
Reposted by Ramses Temmerman
Adam @abrokenbattery.bsky.social · 27/09/2026
“It has sent many people from having mild or moderate cases to severe #MECFS… it has turned people housebound, bedbound. It has completely destroyed their lives.” @georgemonbiot.bsky.social on the harm caused by graded exercise therapy (GET) for #MECFS.
27334
Reposted by Ramses Temmerman
Alem Matthees @alemmatthees.bsky.social · 25/09/2026
The most insane thing about this #MECFS scandal, beyond all the suffering and neglect, is that it costs hundreds of times more in economic losses every year than it would to fund the research that could eventually decrease this burden. The degree of short-sightedness involved is astounding.
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
612238
Reposted by Ramses Temmerman
Billy Hanlon @bhanlon15.bsky.social · 26/09/2026
Bateman Horne Center: Underlying Biological Abnormalities in Long COVID & ME/CFS - Sept 2026 Ft. Dr. Anthony Komaroff, Dr. Lily Chu, and Dr. Cindy Bateman www.youtube.com/watch?v=Nu5T...
youtube.com
Underlying Biological Abnormalities in Long COVID & ME/CFS - Sept 2026
YouTube video by Bateman Horne Center
086
Ramses Temmerman @ramsestemmerman.bsky.social · 25/09/2026
"Arnaud Denis was een bekende Franse acteur, theaterregisseur/toneelschrijver. Na een operatie voor een liesbreuk in 2023 kreeg hij ernstige gezondheidsproblemen, waaronder chronische pijn en #MEcvs (myalgische encefalomyelitis/chronisch vermoeidheidssyndroom)." #RIP #MillionsMissing #Euthanasie
021
Reposted by Ramses Temmerman
Richard Vallée @richardvallee.bsky.social · 24/09/2026
The most important detail about this scandal is that it's 100% a choice. The responsibility of the medical profession is on the same order as what the tobacco industry did about the harms of its products. All of this is a choice. They know. We keep telling them. They don't care. Not one bit.
2258
Reposted by Ramses Temmerman
ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026
Trigger Warning, Arnaud Denis: Person with severe ME/CFS died by euthanasia in Belgium on Sept. 22. ME Global Chronicle shares his account of healthcare and final message to fellow patients. meglobalchronicle.wordpress.com/2026/09/23/i...
meglobalchronicle.wordpress.com
I’m done with medical abuse
Arnaud Denis, a 43-year-old French director and actor, passed away in Belgium on September 22, 2026. A few years ago, following surgery, he developed a very severe case of ME/CFS. He chose to under…
1117
Reposted by Ramses Temmerman
Alex @admiringbog.bsky.social · 24/09/2026
Mentions a brain retraining study with supposedly good results. We get accused a lot of being prejudiced against this concept, but I always feel the opposite—would love a goofy psych program to fix me in 4 weeks.
2253
Ramses Temmerman @ramsestemmerman.bsky.social · 22/09/2026
Het is helemaal niet zo vreemd dat er veel klachten zijn van #langdurigzieken tegen adviserend artsen. In patiëntengroepen lees ik de laatste maanden veel verhalen over onterechte schorsingen van mensen die dolgraag wíllen werken, maar het fysiek simpelweg niet kunnen.🧵
293
Reposted by Ramses Temmerman
C.H. Romatowski @chromatowski.bsky.social · 19/09/2026
Hm.
Washington Post Instagram post

Photo of a person with head bowed.

Overlaid text reads:

1 in 6
Americans are exhausted
'most days, report finds

And it's worse for women and young adultsA UNIVERSITY OF MINNESOTA
7 CIDRAP
Long COVID may affect 1 in 6 infected patients
Laine Bergeson, June 1, 2026
Topics: COVID-19
Lacheev / iStock

Photo of a person with head bowed.
16332
Reposted by Ramses Temmerman
Danielle Beckman @daniellebeckman.bsky.social · 18/09/2026
Covid is not over just because people got tired of hearing about it. #SARSCoV2 is still circulating, still being detected in the air, and still causing chronic diseases like #LongCovid Another reminder that the air we share is part of public health infrastructure. Clean air is public health.
415982
Ramses Temmerman @ramsestemmerman.bsky.social · 17/09/2026
"The court did not accept the insurance provider's argument that equivalent care was available in Belgium. It pointed out that there is no specialized center for pediatric #LongCovid. The girl had unsuccessfully followed the Belgian care pathway for two years." #LongCovidKids #PAIS
despecialist.eu
Rechter stelt tekortkomingen vast in zorg voor kinderen met long covid in België
Een uitspraak van de arbeidsrechtbank van Luik van begin maart 2026 heeft tekortkomingen aan het licht gebracht in de zorg voor kinderen en jongeren (0-17 jaar) met long covid in België. Dat meldt de ...
1104
Reposted by Ramses Temmerman
Alex @admiringbog.bsky.social · 15/09/2026
They’re not saying this but it sounds like this drug treats the ME/CFS subtype of LC: “The novel drug bezisterim may help improve fatigue, post-exertional malaise, and neurological symptoms in people with Long COVID”
53910
Reposted by Ramses Temmerman
It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026
Carmen is discussing ME vs LC and note that there are many symptoms in common. On a previous slide, she said 10-30% of people with Long COVID met criteria for ME, but I didn't catch which criteria.
Sotzny et al. ME/CFS: evidence for an autoimmune disease, autoimmunity reviews 2018
Peluso et al. Mechanisms of Long COVID and the path toward therapeutics. Cell. 2024

Showing that there is immune activation, autonomic and metabolic dysfunction in both
1184
Reposted by Ramses Temmerman
It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/09/2026
David emphasizes that #MECFS is a cluster disorder whereby you meet enough criteria you get the label and doesn't necessarily point to specific pathogenicity. (He's not saying it's not pathological, he's saying we don't wholly understand that the pathology for each person is obvious or the same.)
Radial diagram with ME/CFS at the center, connected to seven overlapping clinical domains arranged in a circle: mast cell activation; autonomic dysfunction; connective tissue and hypermobility; gut and digestive motility; chronic and reactivated infections; immune dysregulation and autoimmunity; and craniocervical and spinal conditions. Lines also connect neighboring domains, emphasizing their proposed interrelationships. Vindara Health logo appears at bottom right.
1222
Reposted by Ramses Temmerman
Alex @admiringbog.bsky.social · 12/09/2026
It’s weird seeing all these “I have COVID” posts knowing some of them will get Long COVID. And most of them aren’t worried at all.
722447
Reposted by Ramses Temmerman
Manuel Ruiz-Pablos @manruipa.bsky.social · 09/09/2026
🔴 Long COVID didn’t come out of nowhere. From the Russian flu and 1918 influenza to EBV, Q fever, SARS and Ebola, post-infectious illness has a much longer history. What can that history teach us about Long COVID & ME/CFS? substack.com/@manruipa/no... #LongCOVID #MECFS
substack.com
Long COVID Did Not Come Out of Nowhere: A Century of Post-Infectious Illness
From the Russian flu and the 1918 influenza pandemic to EBV, Q fever, SARS, Ebola and ME/CFS — what history can teach us about why some people never fully recover after infection
0208
Reposted by Ramses Temmerman
Ramses Temmerman @ramsestemmerman.bsky.social · 06/09/2026
Proud that this timeless #classic from #Hooverphonic was produced two streets away from my home at #SintNiklaas.🎙🎶
youtu.be
Hooverphonic - Mad About You (Official Video)
YouTube video by HooverphonicVEVO
131
Reposted by Ramses Temmerman
valebodi.bsky.social @valebodi.bsky.social · 04/09/2026
Prof. Chris Ponting’s on Myalgic Encephalomyelitis Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal #ME/CFS #pwME @cgatist.bsky.social
theconversation.com
Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal
The co-lead of the world’s largest ever genetic study into ME calls for a radical change in how society deals with the disease.
02812
Reposted by Ramses Temmerman
Eric Topol @erictopol.bsky.social · 02/09/2026
What is being done vs #LongCovid and other post-viral serious chronic illness? Not enough. www.nature.com/articles/d41...
nature.com
When do infections lead to long COVID? Scientists close in on triggers and treatments for post-viral syndromes
Hundreds of millions of people have long-term conditions as a result of an infection. Researchers are working out how to help them.
6255106
Reposted by Ramses Temmerman
Alex @admiringbog.bsky.social · 02/09/2026
“Social contagion” has an interesting history in #ME/CFS. #greatestmedicalscandal
theguardian.com
Apparently just by talking about it, I’m super-spreading long Covid | George Monbiot
A professor has suggested that press coverage could make people believe they have the condition, says Guardian columnist George Monbiot
05119
Reposted by Ramses Temmerman
ME/CFS Science @mecfsscience.org · 01/09/2026
1) Many patients with orthostatic intolerance do not meet the require heart rate increase of POTS criteria. This new expert consensus paper argues that that this group deserves more recognition, including a separate diagnosis and ICD-code.
33312
Reposted by Ramses Temmerman
Anil van der Zee @anilvanderzee.bsky.social · 01/09/2026
Het verhaal over mijn lintje staat nu in de fysieke Volkskrant pagina 8. Ik mis op de foto nog een beetje een harnas passend bij het "ME-influencer" ridderschap...😜 #pwme #myalgicE #millionsmissing #severeME
1276
Reposted by Ramses Temmerman
Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 30/08/2026
Today I presented on the #ethical harms and logical errors of the many #child abuse allegations in pediatric #LongCovid and #MECFS. This was part of the Socrates Stichting Summercourse. The audience was clearly shocked and moved. Lets hope, this is another drop towards change.
815940
Reposted by Ramses Temmerman
ME/CFS Science @mecfsscience.org · 30/08/2026
1) 🇳🇱 In the Netherlands, ME/CFS patient and advocate Anil Van Der Zee was appointed Knight in the Order of Orange-Nassau. It's an recognition of his outstanding contribution to society, a very high honour.
19832
Reposted by Ramses Temmerman
NOS @nieuws.nos.nl · 28/08/2026
Fysiek uitgeschakeld maar belangrijke bron van kennis, lintje voor ME-patiënt Anil van der Zee
nos.nl
Fysiek uitgeschakeld maar belangrijke bron van kennis, lintje voor ME-patiënt Anil van der Zee
Anil van der Zee krijgt een lintje voor zijn aanhoudende inzet voor patiënten met slecht begrepen ziektes als ME en long covid.
55116
Reposted by Ramses Temmerman
Dr. med. Michaela Bauer @drmichaelabauer.bsky.social · 20/08/2026
1/3 Switzerland is one of the world’s wealthiest countries – yet still has no comparable long-term national #MECFS research programme. Meanwhile, other countries are investing millions. Switzerland remains a silent beneficiary of research funded elsewhere.
1189
Reposted by Ramses Temmerman
Dick Zoutman @dickzoutman.bsky.social · 27/08/2026
Please read! Very important study on long covid in healthcare workers!
15231
Reposted by Ramses Temmerman
Stars and Stripes @starsandstripes.bsky.social · 26/08/2026
A civilian geography professor was fired from West Point for pushing back after department officials barred faculty from teaching that humans contribute to climate change.
stripes.com
West Point professor fired after pushing back on limitations to teaching climate change, lawsuit says
Adam Kalkstein pushed back after department officials barred faculty from teaching that humans contribute to climate change, the lawsuit says.
49077463703
Reposted by Ramses Temmerman
Long Covid The Answers @longcovidanswers.bsky.social · 26/08/2026
Professor Ziyad Al-Aly explains why medicine has repeatedly psychologized illnesses it didn’t yet understand. From seizures and ulcers to Long COVID. What we don’t understand isn’t necessarily “in your head.” #LongCOVID #MedicalGaslighting #PAIS #ISLCPAIS #longcovidtheanswers
1146
Reposted by Ramses Temmerman
Alexis M. 🎃 @turnoftheshrew.bsky.social · 22/08/2026
New preprint by some big names in #EDS #MECFS #LongCovid #MESpine spaces proposing new framework/spectrum called Neuro-EDS. (Makes total sense! We all know there’s so much overlap, so should the medical field!) www.preprints.org/manuscript/2...
Neuro-EDS
A CLINICAL FRAMEWORK-NOT A NEW DISEASE.
Altered Connective Tissue Biology
Shared Biomechanical, Physiologic & Inflammatory Mechanisms Multiple Neurologic Manifestations. These seemingly disparate neurological disorders frequently cluster in patients with hEDS/HSD and related connective tissue disorders. 
A REPRODUCIBLE NEUROLOGIC PHENOTYPE
Different Diagnoses. Same Patient


CRANIOSPINAL MANIFESTATIONS
• Craniocervical instability • Chiari I malformation / Complex Chiari spectrum
• Syringomyelia
• Tethered cord syndrome
• Intracranial hypertension
• Intracranial hypotension / spontaneous CSF leaks
• Internal jugular venous outflow
• Eagle syndrome
disorders.
NEURO-AUTONOMIC &
INFLAMMATORY MANIFESTATIONS
• POTS / Dysautonomia
• Cognitive dysfunction
Small fiber neuropathy
• Gastrointestinal dysmotility • Neurogenic bladder • MCAS
• ME/CFS-like illness
32610
Reposted by Ramses Temmerman
Alex @admiringbog.bsky.social · 21/08/2026
“When I have patients do lumbar punctures what really matters to me is how did you feel?” “Patients can have really severe symptoms of head pressure and I have found that does not correlate with their CSF pressure at all…” 1/2 Timestamp 2:30:00 www.youtube.com/live/la3wS9O...
youtube.com
Venous Congestion with EDS Webinar
YouTube video by Venous Congestion Committee
162
Ramses Temmerman @ramsestemmerman.bsky.social · 21/08/2026
"The French national health insurance system no longer links ME/CFS to a psychiatric or psychological disorder. This "institutional" recognition was described as "an important step" by a patient association." Thanks to @millionsmissingfr.bsky.social 🙏 #MEcfs #MillionsMissing
franceinfo.fr
Les patients saluent la première reconnaissance officielle du syndrome de fatigue chronique par l'Assurance-maladie
L'Assurance maladie ne relie donc plus l'encéphalomyélite myalgique à un trouble psychiatrique ou psychologique, rapporte vendredi France Inter. Une reconnaissance "institutionnelle" qualifiée "d'étap...
2189
Reposted by Ramses Temmerman
Jon Douglas @atranscendedman.bsky.social · 21/08/2026
TUM School of Medicine and Health studied 300 people. Long COVID was linked to impaired retinal vessel dilation and narrower arterioles, strongest in ME/CFS, with elevated ICAM-1 and VCAM-1 pointing to persistent endothelial dysfunction. link.springer.com/article/10.1...
link.springer.com
Microvascular remodeling and endothelial dysfunction across the post-COVID-19 spectrum: a prospective observational case-control study - BMC Medicine
Background Post-viral diseases, including post-COVID-19 syndrome (PCS) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), cause substantial long-term morbidity. Persistent cardiovascular...
01710
Reposted by Ramses Temmerman
ME/CFS Research Foundation @mecfsresearch.bsky.social · 14/08/2026
New guest article: Top 100 therapeutic trials in PAIS. Dr Fred Dejonckheere analyses the global pipeline for #MECFS, #LongCovid, POTS and fibromyalgia. Is a new pharmaceutical market segment emerging here? bit.ly/4xHY5U5
Title slide: New guest article, The Top 100 therapeutic trials in PAIS, by Dr. Fred DejonckheereText slide: Why does this article matter now? Five points on patients, costs and researchText slide: Why PAIS is a blue ocean market, with five points on demand and competitionClosing slide inviting readers to read the full article, with the ME/CFS Research Foundation logo
0137
Reposted by Ramses Temmerman
Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 02/08/2026
Our daughter went from being entirely housebound and mostly bedridden to being 80-90% functional within 3 weeks of starting Acetazolamid for her IIH. #LongCovid and #MECFS must be psychosomatic! 🤪
1810219
Reposted by Ramses Temmerman
Miranda 🌸 @crookedneighbor.bsky.social · 10/08/2026
At this point I really really need someone to write a cultural criticism essay about the overlap between transphobia and hatred toward pwME/LC because it is absolutely the same rhetoric from the same well-funded bad actors. In the meantime, this article about Simon Wessely is very good:
transsafety.network
Simon Wessely’s history of discrediting sick and disabled people could be bad news for trans health research priorities.
Psychiatrist Simon Wessely has been appointed to chair the National Children and Young People’s Gender Dysphoria Research Oversight Board. TSN outline our concerns about this appointment.
2149
Reposted by Ramses Temmerman
It's ME(Jaime) @exceedhergrasp1.bsky.social · 08/08/2024
Today, Aug 8, is #SevereMEDay. Today we discuss severe-presenting #MECFS and remember people with severe ME. #MECFS is an infection-associated chronic illness, which means it is often, but not always, kicked off by an infection. ~Half of #LongCOVID cases at 6 mo meet the dx criteria for ME/CFS. 🧵
Two diagrams from the Mayo Clinic Proceedings article I co-authored.  On the left, a diagram of a woman's body, including symptoms of fatigue, muscle aches, PEM, cognitive dysfunction, unrefreshing sleep, orthostatic intolerance, temp. dysregulation, urinary frequency, myalgia, sensory sensitivity/reactivity, swollen lymph nodes & other flu-like symptoms, shortness of breath, palpitations/chest pain, appetite changes and diarrhea/constipation.  On the right, a wheel diagram of symptoms that may flare in post-exertional malaise, the pathology that occurs w/overexertion in which many symptoms flare and new symptoms may appear.  It notes that PEM is not deconditioning, not being more tired than usual after activity, not second-day muscle soreness and symptoms are not necessarily relieved by sleep. It includes all the symptoms mentioned in the first diagram but has some sections on what it's like in the patient's own words.
13235147
Reposted by Ramses Temmerman
Carole Bruce @cabruce.bsky.social · 03/08/2026
People still call #LongCovid. a new illness that no one knows much about. Well lucky them choosing not to know about post-viral illness while millions of us have suffered and continue to suffer from #ME for decades. 80% of ME is post-viral maybe more, yet denial has been the norm for decades.
12710
Ramses Temmerman @ramsestemmerman.bsky.social · 01/08/2026
"Als sportarts zie ik dagelijks #PostCovid patiënten met inspanningsintolerantie of #PEM, autonome ontregeling en ernstige vermoeidheid. Jarenlang werden vergelijkbare klachten bij #MEcvs weggezet als deconditionering, somatisatie of angst. Inmiddels weten we dat die verklaringen te simpel waren."⬇️
volkskrant.nl
Opinie: De wetenschap loopt altijd achter – de patiënt mag daar niet de prijs voor betalen
Nieuwe ziektebeelden worden pas erkend als de technologie beschikbaar is om ze zichtbaar te maken. De patiënt loopt dus niet achter op de wetenschap; de wetenschap loopt achter op de patiënt. Dat vraa...
042
Reposted by Ramses Temmerman
ME/CFS Science @mecfsscience.org · 29/07/2026
🇳🇱 This paper from Rob Wüst's group was published yesterday in Nature Communications. They found several differences between ME/CFS and LC patients and deconditioned participants who underwent 60 days of bed rest 👇
23813
Reposted by Ramses Temmerman
Eric Topol @erictopol.bsky.social · 02/12/2024
Strong new evidence for T cell exhaustion in myalgic encephalomyelitis (ME/CFS) reflecting chronic viral infection, relevant to #LongCovid, and possible path to treatment candidates www.pnas.org/doi/epub/10.... @pnas.org
711626473
Reposted by Ramses Temmerman
Danielle Beckman @daniellebeckman.bsky.social · 11/07/2026
🧠 What if #LongCovid is, in part, a disorder of dopamine? Our new commentary explores how disrupted dopamine signaling may help explain fatigue, brain fog, and autonomic dysfunction, and what this could mean for future therapies. Open access link: shorturl.at/vLAfU
Article at eBiomedicine: 
Dopaminergic vulnerability in long COVID: striatal PET imaging at the brain-body interface

Eric Guedja, Danielle Beckman
21325154
Reposted by Ramses Temmerman
Sebastiaan Deetman @lymecfs.bsky.social · 10/07/2026
Frustrated with trial-and-error approaches to treating #MECFS #LongCovid #Lyme & other #PAIS illnesses, I made a visual hypothesis of likely mechanisms of dysregulation. To discuss with my physician, but I thought I'd share it here too. Here's a clickable 🖱️ version: patientledhypothesis.github.io
Visual hypothesis of dysregulated metabolic feedbacks in ME/CFS. Compiled by Sebastiaan Deetman, the figure provides a schematic overview of mechanisms that are likely involved in causing the shared symptoms of ME and other post-acute infection syndromes (PAIS), regardless of the original trigger. Hyperlinks reference both scientific literature and existing patient-led hypotheses by Tamara Carnac, Patricia Donnellan and Jeff Wood. A maze of boxes and arrows link genetic sensitivities, key causative mechanisms such as cortisol dysregulation and mitochondrial issues referred to as 'the itaconate shunt' to downstream metabolic pathways such as the adrenaline synthesis pathway, dysregulated nitric oxide synthesis as well as the kynurenine pathway. At the center of the figure the arrows combine to show how many of these identified mechanisms cause issues with the constriction and dilation of blood vessels, leading to issues with blood flow and oxygenation, which, in turn amplify the inflammatory response, highlighted in red. These central issues are connected to smaller boxes describing secondary mechanisms such as blood clots, anaerobic respiration, ion imbalances, auto-antibodies, endothelial dysfunction, reduced antiviral activity, nerve-damage and issues with myelin repair, high estrogen levels and collagen degradation to show how these can amplify feedbacks and lead to a continued symptoms such as fatigue, PEM, sleeplessness, POTS, dysautonomia, histamine issues, brainfog, pain, muscle twitches, air-hunger, anxiety and depression. While not the main focus of the figure, it shows some available off-label medications (such as LDN, Mestinon and SSRIs) next to the relevant mechanisms that they likely address. Similarly some supplements and lifestyle-related suggestions are made where relevant, such as pacing, compression garments, meditation, GABA, glutathione, zinc, HBOT, Choline & Folate rich foods. With the warning that this is a hypothesis, not medical advice.
73511
Reposted by Ramses Temmerman
ME/CFS Science @mecfsscience.org · 03/07/2026
1) 🇧🇪 In Belgium, the Federal Knowledge Centre (KCE) published a 144-page report on ME/CFS. It measured the healthcare needs and priorities of ME/CFS patients (shown in the graph below) and recommends investments in research and specialist centres for ME/CFS.
Figure 25 - Priority rating of need categories in people with ME/CFS (n=744)
24814
Reposted by Ramses Temmerman
de Volkskrant @volkskrant.nl · 03/07/2026
Nergens plek voor ernstig zieke postcovidpatiënten: ‘Ik voel me een onbestelbaar postpakketje’
volkskrant.nl
Nergens plek voor ernstig zieke postcovidpatiënten ‘Ik voel me een onbestelbaar postpakketje’
0258
Ramses Temmerman @ramsestemmerman.bsky.social · 03/07/2026
"Het is niet omdat postvirale aandoeningen nu maar een halve bladzijde vullen in al die jaren geneeskunde, dat de patiënten er niet zijn. Het helpt ook niet als het beleid liever wegkijkt van die wetenschap, en er zelfs tegenin blijft gaan." #LongCOVID #MEcvs #NietHersteld #LangdurigZieken
demorgen.be
Een warme samenleving stelt langdurig zieken andere vragen
Eline Delrue is freelance journaliste op invaliditeit, mama van twee en longcovidpatiënte. Zij stelt vast dat de jacht op langdurig zieken een fundamenteel verkeerde vraag stelt.
062