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valebodi.bsky.social
@valebodi.bsky.social
1.6K followers 1.3K following 4.1K posts
Surviving MyalgicE, AAG & CVID to tell the story, patient & advocate w/ a JD. Into MEdical, Social & Climate Justice & Arts. Human neutrino/ PwME = ME apolide/ Gnarled pacer. MEssLand Worldwide https://www.tandfonline.com/doi/pdf/10.2217/fmb-2022-0031
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valebodi.bsky.social
Now, here, you see, it takes all the pacing you can do, to hang on to your already low baseline. - Lewis Carrol reformulated for #PwME #MECFS #PEM
Black on white quote: Now, here, you see, it takes all the running you can do, to keep in the same place. —Lewis Carroll, Through the Looking-Glass and What Alice Found There
January 3, 2026 at 9:10 PM
valebodi.bsky.social
“Because some are in the dark

And the others are in the light.

And you can only see them in the light

You can't see them in the dark,”

Bertolt Brecht
The Threepenny Opera

Via @sgme.bsky.social 🇨🇭
Dedicated to all #pwME
May the light of respect, care, treatments and support shine on #ME/CFS
Black and white drawing of a moth with a quote from Bertolt Brecht The Threepenny Opera in German. English translation: “Because some are in the dark and others are in the light. And you see those in the light, you don't see the ones in the dark,"
December 26, 2025 at 5:07 AM
valebodi.bsky.social
Table 1. Demographics and quality of life of healthy controls and #ME/CFS patients

Healthy controls (n = 61)
Patients (n = 61)
Quality of life (SF-36 score; mean + SD)
Table 1. Demographics and quality of life of healthy controls and ME/CFS patients Healthy controls (n = 61) Patients (n = 61) Quality of life (SF-36 score; mean + SD) Physical functioning 93.4 $ 9.4 37.2 ÷ 20.5 Role limitations due to physical health 80.6 ÷ 35.2 4.9 ÷ 15.7 Role limitations due to emotional problems 86.3 ÷ 28.8 37.1 ÷ 42.7 Energy/fatigue 72.6 $ 27.3 13.7 ÷ 15.8 Mental health/emotional well-being 84.1 $ 17.8 52.5 $ 21.4 Social functioning 88.4 ÷ 18.1 26.0 $ 21.1 Pain 88.0 ÷ 15.4 36.1 ÷ 24 General health 76.3 ÷ 28.0 21.2 ÷ 14.2 Health change 73.4 $ 27.7 43.4 $ 25
December 21, 2025 at 2:51 PM
valebodi.bsky.social
Those affected, who submitted the application to us, were not mentally ill, nor have a psychiatric diagnosis. This must be stated very clearly: #ME/CFS is a somatic disease that affects and causes severe physical suffering.
Our position is against the
psychologization and stigmatization of those
Those affected, who submitted the application to us, were not mentally ill, nor had a psychiatric diagnosis. This must be stated very clearly: #ME/CFS is a somatic disease that affects and causes severe physical suffering. Our position is against the psychologization and stigmatization of those affected. This is also the reason why we deal with this topic. Prof. Robert Roßbruch, DGHS (German Association for Medical in Dying)
November 28, 2025 at 5:54 PM
valebodi.bsky.social
Germany Research Minister @dorobaer.bsky.social and Health Minister Nina Warken will give a joint press statement tomorrow 19/11/2025 on #LongCOVID and #ME/CFS.

👉 You can follow the livestream starting at 3 p.m. directly on the 🇩🇪 BMFTR’s X channel.
Livestream Morgen, 19. November um 15:00 Uhr Pressestatement der Forschungsministerin Dorothee Bär und Gesundheitsministerin Nina Warken zu Long COVID und ME/CFS. in und auf bmftr.bund.de
November 18, 2025 at 5:20 PM
valebodi.bsky.social
Behold some of our viral overlords implicated in serious, chronic/lifelong diseases. Missing are the link b/t EBV and Lupus as well as ME (most probably in a subgroup of pwME)
MIND HEART CANCER IMMUNITY 7.35x schizophrenia risk if mother inflected by flu during pregnancy (Brown, JAMA Psychiatry, 2004) 3.82x bipolar disorder risk if mother infected by flu during pregnancy (Parboosing, JAMA Psychiatry, 2013) 1.6x schizophrenia risk if mother infected by HSV-2 during pregnancy (Buka et al., Biological Psychiatry, 2008) 5.37x teen schizophrenia with childhood EBV infection (Khandaker et al., Schizophrenia Research, 2014) 3.46x schizophrenia if infected with EBV (Akgül et al., Journal of Clinical Medicine, 2025) 1.70x Parkinson's disease risk after influenza (Cocoros, JAMA Network Open, 2021) 7.10x epilepsy risk after cerebral malaria (Boivin, Pediatrics, 2008) 2.56x all cause dementia risk for HSV-1 (Tzeng, Neurotherapeutics, 2018) 2.56x Alzheimer's/neurodegeneration risk for HSV-1 (Tzeng et al., Neurotherapeutics, 2018) 2.25x Alzheimer's/neurodegeneration risk for HSV-2 (Araya et al., D&GCDE, 2025 2.97x Alzheimer's/neurodegeneration risk for HZO VZV (Tsai, PLOS ONE, 2017) 1.12x All cause dementia risk for VZV (Drinkall et al., Alzheimer's Research & Therapy, 2025) 1.45x Alzheimer's/neurodegeneration risk for EBV (Ou, J Alzheimer's Disease, 2020 1.6x Alzheimer's/neurodegeneration risk for CMV (Lee et al., BMC Neurology, 2020) 2.9x vascular dementia risk for CMV (Lee et al., BMC Neurology, 2020) 1.9x all cause dementia risk for CMV (Lee et al., BMC Neurology, 2020) 3.70x cognitive deficit after cerebral malaria 1.36x epilepsy risk after malaria (Khatir, Parasitology, 2023) 6.05x heart attack risk for 7 days after flu infection (Kwong, New England Journal of Medicine, 2018) 3.19x stroke within 3 days after influenza infection (Smeeth, New England Journal of Medicine, 2004) 1.69x stroke for a year after a flu infection (Kulick, doctoral thesis based on peer-reviewed work, 2021) 1.60x heart attack risk after malaria infection (Brainin, ESC Heart Failure, 2021) 3.37x hypertension after malaria (Eze, Malar J, 2019) 1.3x heart attack after shingles
November 16, 2025 at 7:33 PM
valebodi.bsky.social
Dr. David Systrom
oxygen utilization, maybe the mitochondria is the problem there.
#ME/CFS
Dr. David Systrom oxygen utilization, maybe the mitochondria is the problem there.
November 13, 2025 at 4:01 PM
valebodi.bsky.social
Dr. David Systrom
And then finally, a subset of patients with problems with
#ME/CFS
@openmedf.bsky.social
Dr. David Systrom And then finally, a subset of patients with problems with
November 13, 2025 at 4:01 PM
valebodi.bsky.social
Dysautonomia, that’s a nerve problem and therefore O2 supply.
Dr. David Systrom on #ME/CFS
@openmedf.bsky.social
Dr. David Systrom Dysautonomia, that's a nerve problem and therefore 02 supply.
November 13, 2025 at 4:01 PM
valebodi.bsky.social
“So, the hypothesis is largely post-infection, autoimmunity, inflammation

Dr. David Systrom on the current understanding working research model hypothesis of #ME/CFS
Dr. David Systrom So, hypothesis is largely post-infection, autoimmunity, inflammation.
November 13, 2025 at 4:01 PM
valebodi.bsky.social
“Scientists identify virus causing fatigue in ME“
“We’ve found defective immunity, evidence of persistent viral infection, ABNORMAL MITOCHONDRIA and the hypothalamus not functioning!” P. Behan et al Glasgow 1990 (!!!) #MyalgicE #MECFS #PwME #Mitochondria #PostViralSequelae
Old newspaper article from the UK dated 1990 Scientists identify virus causing fatigue in ME SCIENTISTS say they have con- Fatigue Syndrome in Los Angeles firmed that ME, or "yuppie flu", By Wilma Patterson has physical causes, and know yesterday. He stressed that the Corsackie virus is not the only vi- why it causes extreme fatigue. A team from the department of neurology at the Southern General Hospital, Glasgow, using the DNA genetic finger printing tech-nique, identified fragments of the Coxsackie virus in the muscle tis-* sue of 30 per cent of sufferers. Previous studies have concentrated on identifying a viral agent in the blood. When the team looked at individual muscle cells. they found that the energy-producing apparatus of the cell - the mitochondria - were abnormal. This may explain the severe fatigue experienced by those with myalgic en-cephalomyelitis. Abnormal mitochondria in other parts of the body, including a part of the brain known as the hypothalamus, which controls sleep, appetite, sexual drive and emotion, would result in other symptoms characteristic of the illness, according to Peter Behan, professor of neurology at Glasgow University, who led the team. Tests on SO patients who took part in the initial study and analysis of more than 1,000 other case histories, suggested abnormal hypothalmic function and a defective immune system. Professor Behan presented his team's findings at the International Meeting on Chronic Viral rus likely to be involved. Future research will look for the herpes zoster virus, which causes chicken pox and shingles in muscle tissue. "We know that there is a persistent virus and with this technique we can take viruses out, and look at them," he said. *We've found defective immunity, evidence of persistent viral infec-tion, abnormal mitochondria and the hypothalamus not function-ing." Medical opinion about ME is • divided and many doctors dismiss the symptoms as psychologi-cal; others say they are part of a recognised co…
November 3, 2025 at 3:13 PM
valebodi.bsky.social
Living with ME means trying to explain over & over again what PEM is and then suffering with more PEM from doing so…

#ME/CFS #pwME #PEM #PEM≠fatigue

Factsheet on PEM www.s4me.info/docs/PEM_Fac...
Via @scienceforme.bsky.social
Living with PEM Episodes of PEM make the already disabling illness harder to live with. PEM can vary from unpleasant to unbearable. Some people refer to a PEM episode as a crash. Some report episodes of PEM lasting for hours, but they are more likely to last for days or weeks, sometimes longer. There is no treatment for PEM. Someone with PEM has to cut back their activity a lot more than usual or rest completely until the episode of PEM passes. It can be hard or impossible for someone with ME/CFS to avoid PEM because the level of exertion that triggers it is often lower than the amount of exertion they need to do to live, given the support they have. The amount someone can do and level of stimulus they can tolerate may be so low that PEM is unavoidable just from basic activities such as talking or washing. Factors outside the person's control can trigger PEM, such as work and family demands, infections and sensory stimulation such as a hot day or a noisy neighbour.
October 12, 2025 at 5:49 PM
valebodi.bsky.social
This wecrunchME visual shows how people w/ #ME/CFS typically wait many years from onset to receiving a diagnosis. Avarages range from 5- 12 years.

To correct this we need better medical education (especially of #PEM), and readily availably clinical biomarkers

@europeanmealliance.bsky.social
Infographics on the lag between developing ME/CFS and being diagnosed in several countries: ME/CFS patients typically wait many years from onset before receiving a diagnosis Average (mean) time from onset to diagnosis for surveyed ME/CFS patients Ireland UK Australia Norway 5.2 15.2 CrunchME Italy Finland Czech Republic Canada France USA Belgium Serbia Switzerland Germany Austria The Netherlands Iceland Spain Sweden Denmark Croatia 5.9 5.9 6.1 6.2 6.5 6.6 • 6.7 6.8 1 6.9 7.0 7.1 7.1 By country averages range from ~ 5 - 12 years 8.2 8.2 8.4 8.5 8.6 • 9.3 • 11.8 12.0 0.0 2.0 4.0 6.0 8.0 10.0 Average (Mean) Years from Onset to Diagnosis Data Source: European ME Alliance Survey 2024 (Figure 12, p. 35), n = 8,981 Note: these averages are for all respondents, regardless of date or age of onset
October 8, 2025 at 1:02 PM
valebodi.bsky.social
Prof. Olav Mella ACKNOWLEDGMENTS IN DRUG TREAMENT OF ME When patients respond, they improve (not necessarily to the same extent) in all symptoms. Indicates that a central mechanism in the patophysiology of the disease is touched Responses to immune modulating treatment: points at the immune system as the important target that can be the solution giving major improvements The various drug treatments show different kinetics: Ritux response at 4-9 mths after start, Cyclophosphamide more variable (more acute side effects) 2-8 mths, plasma cell targeting at ......... Probably can be explained by how the different drugs work, although the ultimate effects are the same Both the clinical symptoms of ME and the observations when patients respond indicate that major signaling dysfunctions, probably through functional AAB are involved (affect circulatory system, nervous system, GI, GU, respiratory system etc.) Immune drugs work at a different level than where the symptoms are created - our individual immune adaptive systems may govern any response. An intervensjon in the immune system will affect the fine-tuned balance and compensatory alterations may result
September 23, 2025 at 3:21 AM
valebodi.bsky.social
Prof. Olav Mella slide WHAT ARE LLPC AND CAN THEY BE REACHED BY DRUGS? Long Lived Plasma Cells are the plasma cells that produce antibodies (AB) after common infections They are not many, but can produce continuous amounts of highlig specific AB (2000 molecutes pr second), spreading them eventually in the blood stream LLPC reside in privileged sites in the bone marrow and gut walls and can live for decades (but also need renewal) What if clones of LLPC by some mechanism start producing a defect or faulty AAB, or if the signal to stopp making a normal (functional) AAB after an infection is not given - can that result in ongoing symptoms usually seen during the peak of an infection (without the inflammation)? LLPC can be targeted by drugs (next talk prof. Fluge) Charité Berlin International ME/CFS Conference May, 2025
September 23, 2025 at 3:18 AM
valebodi.bsky.social
Slide presented by Prof. Olav Mella WHY WAS THE RITUXME STUDY NEGATIVE? Many possible reasons: Endpoints, especially lack of objective endpoints, too low doses of rituximab as maintanence, placebo mechanisms in both arms - or rituximab does not work sufficiently in this setting In patients with ME according to CCC, not preselected by some unknown measure, rituximab should not be used outside of clinical trials Nevertheless, we know that a subgroup does respond, both in our hands and with other investigators. This subgroup is not big enough to be disclosed in a placebo-controlled trial. Looking back: what did we learn from our studies with rituximab involved? Most patients with clinical response had recurrence after some months, often to a function level higher than pretreatment Berlin May, 2025 CHARITÉ ME/CFS International Conference
September 23, 2025 at 3:15 AM
valebodi.bsky.social
Real Scientists doing & presenting real Science on #ME/CFS
Real Science takes Time
Time is Life
Life is Energy (ATP)
#PwME have no Life because our bodies cannot produce efficiently enough #ATP

See slide presented today 9/5/2025 at @openmedf.bsky.social Stanford Community Symposium by R. Phair
Slide presented by Rob Phair PhD at the Stanford ME/CFS Community Symposium on September 5, 2025 titled The Itaconate Shunt: the big picture Itaconate Shunt: the big picture pyruvate CLYBL acetyl-CoA ACOD1 itaconate • itaconyl-CoA • citramalyl-CoA OAA cis-aconitate NAD* ETC complexes Krebs cycle electron transport chain malate IDH3 2-0G| NADH fumarate SDH ADP+Pi ATP succinyl-CoA ALAS 5-ALA - ---- -------* heme heme synthesis Cellular work / function
September 11, 2025 at 7:38 PM
valebodi.bsky.social
Annual cost of #ME/CFS & #LongCOVID in Germany model & data by Rysklayer via @mecfsresearch.bsky.social
Annual costs of Long COVID and ME/CFS Infographic Annual cost of Long COVID Figure 6: Annual costs of Long COVID and ME/CFS in Germany (average of four models). 2020-2024 (in billions of Euros).| Corresponding numbers of Long COVID and ME/CFS cases at your end are shown in Teblo 1. Table 1: Cases and costs of Long COVID and ME/CFS in Germany, 2020-2024. Average of the four variations of the model developed in this paper (see Annex 2 in the report for details). Year Long COVID ME/CFS Long COVID Dariell J, Brand J, Poessler D, Heydocke J. Schoening S. McLennan AK. 202o. The rising cost of Long CoviD and Merchs in Germany. Hamburg and Karisruhe: ME/OFS Research Foundation and Risklayer. Risklayer ME!
September 9, 2025 at 11:32 PM
valebodi.bsky.social
Prof. Mella’s 🇳🇴 group of #ME/CFS researchers is currently fundraising to continue studying the mab daratumumab in #pwME
Øystein Fluge, Ingrid Gurvin Rekeland, Kari Sørland, Kine Alme, Kristin Risa, Ove Bruland, Karl Johan Tronstad, Olav Mella
Please donate here
www.me-foreningen.no/om-oss/stott...
Outdoor photo of ME/CFS Norwegian researchers Øystein Fluge 1,2,*, Ingrid Gurvin Rekeland 1, Kari Sørland 1, Kine Alme 1, Kristin Risa 1, Ove Bruland 3, Karl Johan Tronstad 4, Olav Mella 1 Via the Norwegian ME Association
September 8, 2025 at 5:00 PM
valebodi.bsky.social
secure the remaining funds so the study can be completed and provide answers for patients worldwide.
#ME/CFS #pwME #Daratumumab
@meforeningen.bsky.social

usercontent.one/wp/www.me-fo...
Outdoor photo of the Norwegian group of ME/CFS spearheading researchers who are currently raising funds for further clinically study the monoclonal antibody Daratumumab use in patients with ME: Øystein Fluge 1,2,*, Ingrid Gurvin Rekeland 1, Kari Sørland 1, Kine Alme 1, Kristin Risa 1, Ove Bruland 3, Karl Johan Tronstad 4, Olav Mella 1
September 8, 2025 at 4:48 PM
valebodi.bsky.social
Real Scientists doing & presenting real Science on #ME/CFS
Real Science takes Time
Time is Life
Life is Energy (ATP)
#PwME have no Life because our bodies cannot produce efficiently enough #ATP

See slide presented today 9/5/2025 at @openmedf.bsky.social Stanford Community Symposium by R. Phair
Slide presented at the Stanford Community Symposium webinar by Rob Phair PhD on the Itaconate Shunt: the key ideas hypothesis of ME/CFS
September 5, 2025 at 5:03 PM
valebodi.bsky.social
#ME/CFS 1993!
WEDNESDAY, 1 SEPTEMBER, 1993 -
Yuppie flu link to slower blood flow to the brain
BRAIN scans have shown reduced blood flow in sufferers from the illness ME
— once dismissed as yuppie flu.
Results published today of the latest research into the illness come at the start of a month of
B&W cutout of a newspaper article dated WEDNESDAY, 1 SEPTEMBER, 1993 - 17 Yuppie flu link to slower blood flow to the brain BRAIN scans have shown reduced blood flow in sufferers from the illness ME — once dismissed as yuppie flu. Results published today of the latest research into the illness come at the start of a month of action to draw attention to the plight of the 150,000 sufferers in Britain of ME - myalgic encephalomyelitis. Dr Durval Costa, a nuclear medicine physi cian at University College London, said: "Initial published results from brain scans found significant differences between ME patients and healthy controls in terms of reduced blood flow to the brain." Consultant immunologist Dr Jonathan Brostofi, also of UCL, who has been The ME generation: Page 11 working with 500 patients believes the illness need not be triggered only by a virus. "It is a clinical observation that there are many triggers for ME, apart from viral infection, including vaccination, life trauma accident and possibly envi ronmental poisons - all of which are stresses to the immune system," he said. But Professor James Mowbray. consultant immunopathologist at St Mary's Hospital, London, said that in the past doctors have often been reluctant to treat the illness because there had been no proven medical test for diagnosing it and that, despite the latest breakthrough, that was unlikely to change. "The trouble is the GP has never been able to have or test or see anything that showed what was wrong, he said on BBC1 Breakfast News today. "The patients told them and that was the best they could do. That is still going to be the case."
August 31, 2025 at 11:35 PM
valebodi.bsky.social
ME sufferers are like butterflies tied to a stone. The butterfly represents the beauty and potential of every single ME sufferer who had dreams, wishes and plans for their life, but who can no longer fully develop their own potential because of the illness.
M.E. IS LIKE BEING A BUTTERFLY TIED TO A STONE. *QUOTE FROM A 9 YEAR OLD GIRL WITH M.E. @HEALMECFS Mein Blog: healmecfs.wordpress.com ME sufferers are like butterflies tied to a stone. The butterfly represents the beauty and potential of every single ME sufferer who had dreams, wishes and plans for their life, but who can no longer fully develop their own potential because of the illness. Responsible for this is the central feature of myalgic encephalomyelitis (ME), the so-called Post-Exertional Neuroimmune Exhaustion (PENE). Having PENE means a significant worsening of the typical ME symptoms after physical, cognitive, emotional and sensory overload. The deterioration often occurs with a time delay (12 - 72 hours after the overloading activity) and lasts for days, weeks or even months. So in summary any activity, no matter how nice it may be, can worsen the condition. This feature is absolutely cruel when you have so much to give to the world, but have to pay dearly for everything you try to give. @HEALMECFS Mein Blog: healmecfs.wordpress.com
August 31, 2025 at 4:07 PM
valebodi.bsky.social
History of polio en.wikipedia.org/wiki/History...

#Polio

An Egyptian stele thought to represent a person with polio. 18th Dynasty (1403–1365 BC)
An Egyptian stele thought to represent a person with polio. 18th Dynasty (1403–1365 BC)
August 27, 2025 at 6:26 PM
valebodi.bsky.social
“The opposite of knowledge is not ignorance, but deceit and fraud.”
- Jean Baudrillard
www.azquotes.com/picture-quot...
Photo of French philosopher Jean Baudrillard on the left and a quote of his on the right, white text on black screen which says: The opposite of knowledge is not ignorance, but deceit and fraud. - Jean Baudrillard — AZ QUOTES
August 25, 2025 at 7:49 PM