PwME 4 bioMEdical research Profile picture
Surviving #MyalgicE #AAG to tell the story, patient&advocate w/ a JD, into: MEdicine, Social justice & the Arts, Human neutrino/MEdical apolide/gnarled Pacer
Jun 24 4 tweets 1 min read
Plasma cell targeting with the anti-CD38 antibody daratumumab in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) -a clinical pilot study Olav Mella et al. Norway #MECFS frontiersin.org/journals/medic… All five patients with sustained improvement reached a mean step count above 10000/24h for some weeks, and above 15000 on individual days. Relative reduction of serum IgG levels was 54% in patients with clinical improvement, and 40% in those with no benefit. Low baseline NK-cell
Mar 3 4 tweets 1 min read
ME/CFS diagnosis was associated with elevated serine but reduced 5-methyltetrahydrofolate (5MTHF). One carbon pathways were disrupted. Methylation of glycine led to elevated sarcosine but further methylation to dimethylglycine and choline was decreased. Creatine and purine intermediates were elevated. Transaconitate from the tricarboxylic acid cycle was elevated in ME/CFS along with essential aromatic amino acids, lysine, purine, pyrimidine and microbiome metabolites. Serine is a precursor of phospholipids and sphingomyelins
Feb 1 4 tweets 1 min read
Typing myalgic encephalomyelitis by infection at onset: A ⁦⁦@DecodeMEstudy⁩ Results: The well-established sex-bias among ME/CFS patients is evident in the initial DecodeME cohort: 83.5% of participants were females. What was not known pubmed.ncbi.nlm.nih.gov/37881452/ Results: The well-established sex-bias among ME/CFS patients is evident in the initial DecodeME cohort: 83.5% of participants were females. What was not known previously was that females tend to have more comorbidities than males. Moreover, being female, being older and being
Jan 12 5 tweets 1 min read
“Patients have to recover for days from, for example, emptying the dishwasher. You can imagine what a disabling disease it is, what an enormous impact it has on your life."

“We caused PEM by a bicycle test. These people were then disabled for a month. Which is almost unethical, but we wanted to find out what happened before and after the CPET 🚴‍♀️ test. What we saw is that the energy factories were not working as well and that the muscles themselves showed abnormalities."

“The same picture applies to the immune cells, the energy factories do not work
Sep 29, 2024 4 tweets 1 min read
The persistence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) after SARS-CoV-2 infection: A systematic review and meta-analysis ⁦@Dr_M_Guthridge⁩ Results
We identified 13 eligible studies that reported a total of 1,973 LC patients. sciencedirect.com/science/articl… Our meta-analysis indicated that 51% (95% CI, 42%-60%) of LC patients satisfied ME/CFS diagnostic criteria with fatigue, sleep disruption, and muscle/joint pain being the most common symptoms. Importantly, LC patients also experienced the ME/CFS hallmark symptom, post-exertional
Aug 5, 2024 4 tweets 1 min read
van Campen & Visser going again at the 🫀& 🧠 ground zero of #PwME’s orthostatic intolerance: The cardiac output - cerebral blood flow relation is abnormal in most #MECFS patients with a normal heart rate and blood pressure response during a tilt test. medrxiv.org/content/10.110… Introduction: Orthostatic intolerance is highly prevalent in patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and is caused by an abnormal reduction in cerebral blood flow (CBF). In healthy controls (HC) regulation of CBF is complex and involves multiple
Jun 21, 2024 6 tweets 2 min read
Her muscles exhibited very high levels of a protein called WASF3 which Hwang knew little about. Checking the literature, though, Hwang – who also knew nothing about ME/CFS – found a reference to WASF3 in an obscure 2011 ME/CFS study. #MECFS #WASF3 meresearch.org.uk/getting-their-… Hwang and his team began a full-court press on their findings. They found lower oxygen consumption (energy production), a 34% drop in the levels of the cytochrome oxidase enzyme in the mitochondria, and unusually prolonged recovery times after exercise.
Returning the WASF3
Apr 30, 2024 4 tweets 1 min read
Researchers from the University of Edinburgh discovered that cells from the pelvic wall of women with #Endometriosis have a different metabolism compared to women without the disease. The cells produced higher amounts of lactate, a potentially harmful femtechworld.co.uk/news/endometri… waste product, which is similar to the behaviour of cancer cells.
The team found that when the cells from women with endometriosis were treated with dichloroacetate, they returned to normal metabolic behaviour.
The scientists also noted a reduction in lactate and an impact on the
Jul 24, 2023 6 tweets 1 min read
Mitochondrial abnormalities in the postviral fatigue syndrome #MECFS: “We have examined the muscle biopsies of 50 patients who had postviral fatigue syndrome (PFS) for from 1 to 17 years. We found mild to severe atrophy of type II fibres in 39 biopsies, link.springer.com/article/10.100… with a mild to moderate excess of lipid. On ultrastructural examination, 35 of these specimens showed branching and fusion of mitochondrial cristae. Mitochondrial degeneration was obvious in 40 of the biopsies with swelling, vacuolation, myelin figures and secondary lysosomes.