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valebodi.bsky.social
@valebodi.bsky.social
1.5K followers 1.2K following 3.7K posts
Surviving MyalgicE, AAG & CVID to tell the story, patient & advocate w/ a JD. Into MEdical, Social & Climate Justice & Arts. Human neutrino/ PwME = MEdical apolide/ Gnarled pacer. MEssLand Worldwide https://www.tandfonline.com/doi/pdf/10.2217/fmb-2022-0031
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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
valebodi.bsky.social
In case anyone is interested, I’ve found this thread on Reddit in which a patient reports benefiting from stacking up the 2 meds
www.reddit.com/r/cfs/commen...
White on black background screenshot of a Reddit post Text = Log In ••• purplequintanilla • 2y ago I put this in the other thread about OMF, but I think it belong here instead: I'm glad they're testing them together as one of the trials. I've been on LDN for years (it took months for it to start helping). I started mestinon last year, and it helped right away. But when I ran out of LDN, it stopped helping completely. So if I'd tried it before LDN, I would have missed its significant benefit to me. You know how most drugs help some of us but not others? I'm sure some is a difference in our biology or the expression of our illness, but I wonder sometimes if it's also because of our varying severity. I don't know if I would have been able to feel the difference LDN give me if I hadn't already been lifted up by something else that was game changing, because the LDN was much more subtle.
August 11, 2025 at 4:24 AM
valebodi.bsky.social
Anouk Slaghekke PhD gave a poster presentation on the pathology and diagnosis of microvascular dysfunction and basal membrane thickening in skeletal muscle in #ME/CFS and post-COVID syndrome. The study examined skeletal muscle oxygenation during maximal exercise and

youtu.be/2wVURGvP844?...
Color slide of Anouk Slaggheke PhD presentation in May 2025 at the International ME/CFS conference Discussion • Endothelial activation & dysfunction basement membrant thickening ⬇️ + metabolite removal & O2 and nutrient delivery, predisposing to fatigue ME lack ofsupply of O2. : lack of clearance International ME/CFS Conference 2025
August 3, 2025 at 4:15 PM
valebodi.bsky.social
2. variability and fluctuation of both symptoms and physical findings in the course of a day; and
3. an alarming tendency to become chronic.
- Dr MELVIN RAMSAY (1988) -
B&W slide with a quote of Dr.Melvin Ramsay: The clinical identity of myalgic encephalomyelitis syndrome rests on three distinct features, namely: 1. a unique form of muscle fatigability whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored; 2. variability and fluctuation of both symptoms and physical findings in the course of a day; and 3. an alarming tendency to become chronic. - Dr MELVIN RAMSAY (1988) -
August 3, 2025 at 3:55 PM
valebodi.bsky.social
Every doctor, nurse, PT, OT, educator should read Dr. Melvin A. Ramsay’s book on Myalgic Encephalomyelitis and post viral fatigue states, which is now available as an e-book and on sale thanks to the @meassociation.org.uk
#ME/CFS #pwME #ICDG93.3 #ICDG93.32
B&W slide with a quote by Dr. Melvin Ramsay: The clinical identity of myalgic encephalomyelitis syndrome rests on three distinct features, namely: 1. a unique form of muscle fatigability whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored; 2. variability and fluctuation of both symptoms and physical findings in the course of a day; and 3. an alarming tendency to become chronic. - Dr MELVIN RAMSAY (1988) -
August 3, 2025 at 3:47 PM
valebodi.bsky.social
The clinical identity of myalgic encephalomyelitis rests on three distinct features, namely:
1. a unique form of muscle fatigability whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored;
2. variability and
B&W photo of Dr. Melvin A. Ramsay with one of his quote on the disease which he named Myalgic Encephalomyelitis and which we now refer to as ME/CFS: “The clinical identity of myalgic encephalomyelitis syndrome rests on three distinct features, namely: 1. a unique form of muscle fatigability whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored; 2. variability and fluctuation of both symptoms and physical findings in the course of a day; and 3. an alarming tendency to become chronic.” - Dr MELVIN RAMSAY (1988) -
August 3, 2025 at 12:30 AM
valebodi.bsky.social
www.vangoghmuseum.nl/en/collectio...
Photo of a white butterfly on a purple lavender flower stem
August 2, 2025 at 11:58 PM
valebodi.bsky.social
cdn.mediatheque.epmoo.fr/link/3c9igq/...
Framed painting titled Au lit (1891) by French artist Edouard Vuillard depicting a human figure in bed
August 2, 2025 at 2:42 PM
valebodi.bsky.social
💪🏻fatigability 💪🏻
Abnormal muscular fatigability is the dominant clinical feature of the disease. It has been suggested by Dr David Wilkie that this phenomenon might result from damage to mitochondria. Parish (1974) also considered that 'there is a prolonged MEtabolic disorder in many patients
#ME/CFS
Muscular fatigability Abnormal muscular fatigability is the dominant clinical feature of the disease. It has been suggested by Dr David Wilkie that this phenomenon might result from damage to mitochondria. Parish (1974) also considered that 'there is a prolonged metabolic disorder in many patients which may be affecting
July 30, 2025 at 8:05 PM
valebodi.bsky.social
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 Mentioning #ME/CFS
Data Source: PubMed, CrunchME analysis
Graphic 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 Mentioning ME/CFS vs. Other Diseases 600,000- HIV/AIDS CrunchME Cumulative Number of Publications 400,000 200,000 Parkinson's Rheumatoid Arthritis MS ME/CFS 1980 1990 2000 2010 2020 Year Data Source: PubMed, CrunchME analysis CC BY 4.0
July 20, 2025 at 9:36 PM
valebodi.bsky.social
WE CALLED IT THE PESTILENCE
Jane Eden gives a personal account of The Royal Free (Hospital) Disease
in World Medicine June 15, 1977

#MyalgicEncephalomyelitis #ME/CFS via @rfh1955.bsky.social
Black & white scan of an article titled WE CALLED IT THE PESTILENCE by Jane Eden in which she gives a personal account of The Royal Free (Hospital) Disease The disease was then named Myalgic Encephalomyelitis and is now referred to as ME/CFS Published in World Medicine 15 June 1977
July 20, 2025 at 4:20 PM