iiinova — where your digital self keeps evolving

valebodi.bsky.social @valebodi.bsky.social · 08/09/2026

Current timeline depicted in a Venn diagram Nineteen Eighty-Four Clockwork Orange Brave New World The Matrix Lord of the Flies You Are Here Animal Farm Gattaca Brazil Soylent Green Fahrenheit 451 Logan's Run Handmaid's Tale

Image of a Venn diagram composed by 4 intersecting colored circles (red, blue, green and yellow) naming famous dystopian books and movies

Nineteen Eighty-Four
Clockwork Orange
Brave New World
The Matrix
Lord of the Flies
You Are Here
Animal Farm
Gattaca
Brazil
Soylent Green
Fahrenheit
451
Logan's Run
Handmaid's Tale

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valebodi.bsky.social @valebodi.bsky.social · 21/08/2026

“We long to return to normal, but normal led to this.” Ed Yong (2020) @edyong209.bsky.social

Bills posted on a wall in the foreground one that quotes Pulitzer Prize winner Ed Yong:

We long to return to normal, but
**normal led to this**
(Ed Yong, 2020)

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valebodi.bsky.social @valebodi.bsky.social · 11/08/2026

Diagnosis of ME/CFS Based on medical history, diagnostic criteria, differential diagnosis and course 👎🏻🚫👎🏻 Diagnosis of migraine and RLS Based on anamnesis, diagnostic criteria, differential diagnosis and course 👍🏻 By @neurostingl.bsky.social

Meme with Drake in German

Diagnose von ME/CFS anhand von Anamnese, Diagnosekriterien, Differentialdiagnostik und Verlauf
Diagnose von Migräne und RLS
anhand von Anamnese, Diagnosekriterien, Differentialdiagnostik und Verlauf

English translation

Diagnosis of ME/CFS based on medical history, diagnostic criteria, differential diagnosis and course

Diagnosis of migraine and RLS

Based on anamnesis, diagnostic criteria, differential diagnosis and course

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valebodi.bsky.social @valebodi.bsky.social · 01/08/2026

‘Living’ la vida hypoxica 24/7 365 #ME/CFS #pwME #ICD-10G93.3 #ICD-10G93.32 #ICD-118E49 IMPAIRED SKELETAL MUSCLE OXYGENATION AND MICROVASCULAR DYSFUNCTION IN LONG COVID AND ME/CFS Anouk Slaghekke et al. Page 12 www.amsterdamumc.org/download/ams...

Slide from Dutch researcher Anouk Slaghekke et al.

IMPAIRED SKELETAL MUSCLE OXYGENATION AND MICROVASCULAR
DYSFUNCTION IN LONG COVID AND ME/CFS

lack of supply: insufficient 0, & nutrient supply
lack of clearance: built-up of waste-products lack of supply: insufficient 0, & nutrient supply
lack of clearance: built-up of waste-products

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valebodi.bsky.social @valebodi.bsky.social · 01/08/2026

oxygen delivery. #pwME #ME/CFS #LongCOVID (ME subgroup post COVID-19) Anouk Slaghekke Fundamental Research IMPAIRED SKELETAL MUSCLE OXYGENATION AND MICROVASCULAR DYSFUNCTION IN LONG COVID AND ME/CFS www.amsterdamumc.org/download/ams...

Anouk Slaghekke
Fundamental Research
Page 12

IMPAIRED SKELETAL MUSCLE OXYGENATION AND MICROVASCULAR
DYSFUNCTION IN LONG COVID AND ME/CFS
Anouk Slashekke. Braeden 1 Chariton Jelle Y Huuts . Brent Aooelman • Ellen A Breedveld. Wendy.
Noort', Frank W Bloemers', Paul van Amstel", Jelle J Posthuma", Richie P Goulding", Michèle van Vugt', Rob C/ Wüst"
'Vrije Universiteit Amsterdam, Department of Behavioral and Movement Sciences, Amsterdam
-Centre for Experimental and Molecular Medicine, Amsterdam UMC, The Netherlands
• Deoartment of Trauma Survery. Amsterdam UMC. The Netherlands.
* Division of Surgery, Flevoziekenhuis, Almere, The Netherlands
* Department of Internal Medicine, Division of Infectious Diseases, Amsterdam UMC, the Netherlands Introduction: Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are debilitating multisystem diseases characterized by brain fog. reduced exercise capacity, and post-exertional malaise. Ineffective matching of oxygen delivery to consumption in skeletal muscle can contribute to a lower exercise capacity and fatigue. Therefore, this study examines skeletal muscle
Methods: Markers of skeletal muscle microcirculation were assessed in Long COVID (n-24), ME/CFS | (pre-2020 diagnosis, n-26), and healthy controls (n«30). Participants underwent a maximal cycling exercise test for determination of maximal oxygen uptake (VOmax) with simultaneous muscle oxygenation assessment (near-infrared spectroscopy). Vastus lateralis muscle biopsies were analysed using immunohistology and electron microscopy to assess capillary ultrastructure, capillarization, and basal membrane thickness.
Results: Both patient groups obtained lower VO2max (p<0.0001) and peak power output (p<0.0001). despite no alterations in maximal heart rate or ventilatory equivalents. Tissue O, uptake (p*0.001) and vasodilatory capacity

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valebodi.bsky.social @valebodi.bsky.social · 01/08/2026

Update from Dutch researcher Anouk Slaghekke in the AMS 9th annual research meeting abstract book (p. 12). This small study suggests that in #pwME and post CoV ME, the capillaries in the muscles do not deliver oxygen efficiently, even though heart and lung function are normal. 1

Slide from from Dutch researcher Anouk Slaghekke in the AMS 9th annual research meeting abstract book (p. 12). This study suggests that in #pwME and #LongCovid (the subgroup that develops post COVID-19 ME) the capillaries in muscles do not deliver oxygen efficiently, even though heart and lung function are normal.

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valebodi.bsky.social @valebodi.bsky.social · 27/07/2026

You’re invited to join a webinar on #PEM THE UNIVERSITY of EDINBURGH @actionforme.bsky.social PRIME - building infrastructure for Patients, Researchers and Industry for #ME/CFS PRIME Webinar 3: Post-Exertional Malaise (PEM) Thursday 30th July, 2026 2-5pm GMT Link us02web.zoom.us/webinar/regi...

igc
GENETTER CANCER
THE UNIVERSITY of EDINBURGH
ACTION FOR ME.

PRIME - building infrastructure for Patients, Researchers and Industry for ME/CFS
PRIME Webinar 3: Post-Exertional Malaise (PEM)
Thursday 30th July, 2026 2-5pm GMT
Online: Register here
General abstract:
Post-Exertional Malaise (PEM) is a hallmark symptom of ME/CFS characterized by a disproportionate, delayed worsening of existing symptoms-and the appearance of new ones-following minor physical or mental effort. Consequently, PEM is a mandatory criterion for inclusion in most recent ME/CFS studies, although this wasn't always true historically. This webinar will ask various questions about PEM, including: what it is, what causes it, and how can it best be explained and defined?
Speakers:
• Maree Candish
ME/CFS research advocate & Committee member of Science for ME
• Mark Faghy
Professor of Clinical Exercise Physiology, University of Loughborough
• Marjon Wormgoor
Independent researcher & ME/CFS research advocate
• Todd Davenport
Professor and Chair of the Doctor of Physical Therapy (DPT) Program @ University of the Pacific
• Maureen Hanson - Liberty Hyde Bailey Professor in the Department of Molecular Biology and Genetics at Cornell University and Director of the Centre for Enervating Neuroimmune Disease

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valebodi.bsky.social @valebodi.bsky.social · 17/06/2026

MEME of the day Idk how many “one must imagine Sisyphus happy” I got left in ME #ME/CFS #pwME

Black and white photo of philosopher and Nobel Laureate Albert Camus and white text reading: Idk how many “one must imagine Sisyphus happy” I got left in me

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valebodi.bsky.social @valebodi.bsky.social · 11/06/2026

The extent to which #ME/CFS has been under-researched compared to other conditions… (HIV/AIDS, Parkinson’s, RA, MS) Via @rorpreston.bsky.social @crunchme.bsky.social The gap in accumulated research on ME/CFS compared to other diseases like HIV/AIDS & MS has widened through decades of neglect

Graph showing
The gap in accumulated research on ME/CFS compared to other diseases like HIV/AIDS & MS has widened through decades of neglect
Cumulative Publications to Date
Data Source: PubMed, CrunchME analysis

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valebodi.bsky.social @valebodi.bsky.social · 23/05/2026

And this is when you are at the moderate level on the disease’s spectrum. For reference see @meresearchuk.bsky.social www.meresearch.org.uk/living-with-...

Infographic from @MEResearchUK based on the revised 2021 ME/CFS guidelines

The 2021 NICE guidelines state that people with the following severities of ME/CFS are likely to be able to:
Mild
• Care for themselves.
• Do some light domestic tasks (sometimes needing support).
• May have difficulties with mobility.
• Most still working or in education but to do this have probably stopped all leisure and social pursuits.
• Often reduced hours, take days off and use the weekend to manage.
Severe
• Unable to do any activity for themselves/can only carry out minimal daily tasks.
• Severe cognitive difficulties.
• May depend on a wheelchair.
• Often unable to leave the house.
• May spend most of time in bed.
• Often extremely sensitive to light and sound.
Moderate
• Restricted in all activities of daily living.
• Reduced mobility.
• Peaks and troughs in their level of symptoms.
• Usually stopped work or education, and need rest periods, often resting in the afternoon for 1 or 2 hours.
• Sleep at night generally poor quality and disturbed.
Very severe
• In bed all day.
• Dependent on care.
• Need help with personal hygiene and eating.
• Very sensitive to sensory stimuli.
• May not be able to swallow and may need to be tube fed.

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valebodi.bsky.social @valebodi.bsky.social · 11/05/2026

photographs, and family histories. The records, published by the National Chronic Fatigue and Immune System Dysfunction Syndrome (CFIDS) Foundation, and are publicly available meaning that no ethical approval was needed for the study.

Chart by ME Research UK showing the results of
Investigating experiences of ME/CFS using memorial entries
Information in memorial records has been used to investigate the experiences of those with ME/CFS
through the eyes of their loved ones.
In the study, researchers read through all records and identified common themes, which were:
'Systemic neglect and institutional failure'
'Clinical neglect and failures'
'Social disconnection and advocacy'
'Personal burden and quality of life'
Note: Memorial records are documents created to honour and preserve details about a deceased person - in this case, those with ME/CFS

Sirotiak and Amro PLOS One
(2026)

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valebodi.bsky.social @valebodi.bsky.social · 10/05/2026

Some roses for you dear Naomi 💙💕💙🫂💙💕💙

Photo of a bouquet of blush pink roses in a yellow pitcher on a table

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valebodi.bsky.social @valebodi.bsky.social · 10/05/2026

To all mothers with ME and all the mothers caring for their children or other family members with ME. These are for you, wherever you are in the world, I send you all my love & fortitude today and every day #ME/CFS #pwME #MEAwarenessMonth #ICDG93.3 #ICDG93.32

Photo of a bouquet of pale pink roses and green olive tree branches in a vase on a table

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valebodi.bsky.social @valebodi.bsky.social · 20/04/2026

CRASH PREVENTION BY GALEN WARDEN From the forthcoming book, Dying to Live The most urgent thing you can do to prevent someone with Mild #ME/CFS or Long Covid from becoming as severely ill as my son James, who is 100% bedrid-den, is to let them rest. Only extreme, radical rest will allow their bodies

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valebodi.bsky.social @valebodi.bsky.social · 13/04/2026

provide its members with legal medical death support in Germany. A trip to a Swiss organization is no longer necessary. Self-determined death with dignity and with the help of third parties (medical &legal support) is possible in Germany and legally accessible." What this report exposes and makes

⚠️⚠️⚠️ TW
Autotranslated text of page 8 of the German society for MAID DGHS from their report titled Humane Living Humane Dying:
MAID case numbers 2025
Annual press conference informed on statistics and campaign start
In 2025, the German Society for Humanes Sterben
(DGHS) e. V. provides a total of 898 members with professional self-accompanying. As a result, the number of people who left life in this way self-determined and in the presence of doctors and lawyers increased compared to the previous year (2024: 623 cases).
To be able to decide on its own responsibility,
osotheP6d0rdContutionslCout.now weeks it will be six years ago. For our members
ano our emoloyee Whotnor oluntaror time, this statement is elementary. As far as the implementation of the mediation procedure is
concetned, Me hare dorelooed hiah talolyand
of the Federal Constitutional Court, which to this day have become morel
Than have proven. In not a single case of the tota o1 more than 2,300 Tree death escorts mediated)
msanon coonoratre
•2025, a medical death support could t tanaed and cartied out for 898 membees volliri
lo laave
in the motives, multi-morbidity makes up the argest aroup (31 percent., followed by the motir ot Ite-satiely (2b)
Main motive for medical acconcameirg in sireiizionl
Multimorbidity
Lite tullness
ancon
Thcirological drooding
The largest group in terms of numbers were womeri between the aoos of R0 and RQ.
Among the applications recerved by the DGHs office, 41 were rejected and 103 people who died of
figures were presented by DGHS President RA Prof.
Robert Roßbruch on 29.01.2026 at a press
conference in Gerlin, It was striking that in 20251 there were also some very young people who were rovided with a death support due to the diseasd ME/CFS.
Roßbruch explained to the joumalists in the room
As you have long known by now, the German Society for Humane Dying e. V., which sees itself primarily as a citizens' rights and patient protection
members with legal medical death support in

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valebodi.bsky.social @valebodi.bsky.social · 06/04/2026

The phrase "I AM AFRAID OF THE ONES IN POWER WHO KILL PEOPLE AND DO NOT ADMIT GRIEF" is a powerful text work by American conceptual artist Jenny Holzer. It is often associated with her Survival Series (1983–1985) or Laments (1989), both of which featured darker, more emotional, and urgent texts

Photo of projected message onto a building saying: I AM AFRAID OF THE ONES IN POWER WHO KILL PEOPLE AND DO NOT ADMIT GRIEF
by artist Jenny Holzer

The phrase "I AM AFRAID OF THE ONES IN POWER WHO KILL PEOPLE AND DO NOT ADMIT GRIEF" is a powerful text work by American conceptual artist Jenny Holzer. It is often associated with her Survival Series (1983–1985) or Laments (1989), both of which featured darker, more emotional, and urgent texts compared to her earlier, more detached Truisms.

110

valebodi.bsky.social @valebodi.bsky.social · 06/04/2026

Happy Easter only to those who still miss Kurt Cobain, his songs, his honesty and his flawed humanity and all #pwME and those who truly care for us

Photo of the late Kurt Cobain in front of a Jenny Holzer installation on the marquee of an empty theater at 233 W 41st St, 7/22/93

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valebodi.bsky.social @valebodi.bsky.social · 26/03/2026

No other disease process in the history of modern medicine has been so mischaracterized and trivialized, for so long as ME. While also being described over time, in outbreaks and sporadic forms and given different names. How does metabolism differ in #ME/CFS cases vs. controls? METABOLIC PATHWAYS

Black on white background flow chart representing the complex metabolic pathways implicated in ME/CFS versus healthy controls.
Titled: How does metabolism differ in ME/CFS cases vs. controls?
METABOLIC PATHWAYS

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valebodi.bsky.social @valebodi.bsky.social · 19/03/2026

WHAT IF YOU LOST HALF THE HOURS IN YOUR DAY? YOUR WEEK? YOUR YEAR? #ME/CFS causes a 50% reduction in pre-illness activity (at least). Every COVID infection increases your risk. It can happen to anyone. Practice self care & protect your community. Wear a mask This & more ko-fi.com/saltydyke/shop

Black on white background poster with QR code in the bottom right corner reading:

WHAT IF YOU LOST HALF THE HOURS IN YOUR DAY?
YOUR WEEK? YOUR YEAR?
ME/CFS causes a 50% reduction in pre-illness activity (at least). Every COVID infection increases your risk. It can happen to anyone.
Practice self care & protect your community
Wear a mask

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valebodi.bsky.social @valebodi.bsky.social · 15/03/2026

#LongCOVIDAwarenessDay For those who already are aware and suffer, I hear you and I’m so sorry. For those who are not, listen, learn, care and do good and better. And to borrow from the late David Lynch: “Okay, let’s try that again, but this time good.”

Photo of the late David Lynch on a film set holding and speaking through a megaphone. Captions: Okay, let’s try that again, but this time good.

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valebodi.bsky.social @valebodi.bsky.social · 03/01/2026

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

061

valebodi.bsky.social @valebodi.bsky.social · 26/12/2025

“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,"

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valebodi.bsky.social @valebodi.bsky.social · 21/12/2025

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)

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valebodi.bsky.social @valebodi.bsky.social · 28/11/2025

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)

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valebodi.bsky.social @valebodi.bsky.social · 18/11/2025

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

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valebodi.bsky.social @valebodi.bsky.social · 16/11/2025

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

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valebodi.bsky.social @valebodi.bsky.social · 13/11/2025

Dr. David Systrom oxygen utilization, maybe the mitochondria is the problem there. #ME/CFS

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valebodi.bsky.social @valebodi.bsky.social · 13/11/2025

Dr. David Systrom And then finally, a subset of patients with problems with #ME/CFS @openmedf.bsky.social

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valebodi.bsky.social @valebodi.bsky.social · 13/11/2025

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.

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valebodi.bsky.social @valebodi.bsky.social · 13/11/2025

“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.

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valebodi.bsky.social @valebodi.bsky.social · 03/11/2025

“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…

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valebodi.bsky.social @valebodi.bsky.social · 12/10/2025

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.

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valebodi.bsky.social @valebodi.bsky.social · 08/10/2025

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

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valebodi.bsky.social @valebodi.bsky.social · 11/09/2025

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

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valebodi.bsky.social @valebodi.bsky.social · 10/09/2025

Annual cost of #ME/CFS & #LongCOVID in Germany model & data by Rysklayer via @mecfsresearch.bsky.social

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valebodi.bsky.social @valebodi.bsky.social · 08/09/2025

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

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valebodi.bsky.social @valebodi.bsky.social · 08/09/2025

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

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valebodi.bsky.social @valebodi.bsky.social · 05/09/2025

Slide presented at the Stanford Community Symposium webinar by Rob Phair PhD on the Itaconate Shunt: the key ideas hypothesis of ME/CFS

041

valebodi.bsky.social @valebodi.bsky.social · 01/09/2025

#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."

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valebodi.bsky.social @valebodi.bsky.social · 31/08/2025

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

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valebodi.bsky.social @valebodi.bsky.social · 27/08/2025

History of polio en.wikipedia.org/wiki/History... #Polio An Egyptian stele thought to represent a person with polio. 18th Dynasty (1403–1365 BC)

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valebodi.bsky.social @valebodi.bsky.social · 25/08/2025

“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

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