@joannebright
ME Sufferer. Mild from Glandular Fever 1986, Severe from Flu 2000. Chronic Lyme too. Currently Borrelia free. 6 DecodeME genes mutated, 5of6 SNP'S too. Biggest threat is Persistent Infections. Alternative medicine detects my infections, the NHS does not!
Todayβs Westminster Hall debate on government support for people with #MECFS is now on YouTube. Led by Tessa Munt MP (Wells and Mendip Hills, Liberal Democrat), and lasts around an hour.
youtu.be/wZFEUnjWgOA?...
Thanks to Laura Scheepers who has written out the text: The white ring, with 'healthy individual' has - nonlimited ability to care for self and others - nonlimited ability to attend events - nonlimited ability to exercise and play sports - nonlimited ability to traven The yellowish ring with 'mild ME/cfs' say: - limited ability to work full time - limited abilty to be active - limited ability to tolerate loud/stimulating environments The orange ring, with 'moderate ME/cfs' says: - limited ability to work (may only tolerate WFH) - limited ability to leave house and attend social events - limited ability to complete errands The dark orange ring with 'moderate-severe ME/cfs'has housebound as subtitle and says: - limited use of shower - limited ability to prepare meals - limited ability to move about household The red ring with 'severe ME/cfs' says: - limited use of restroom - limited use of books and technology The poopbrown ring with 'very severe ME/cfs' has bedbound as subtitle and says: - limited tolerance of sensory input - limited ability to move and communicate. β-
This was very popular a few months ago so I thought I would repost it
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1) Interesting figure showing where immune cells are located in the human body (mostly in the bone marrow and lymphatic system).
Decode ME hosted a webinar with Prof Chris Ponting and the Decode ME management team explaining the results of the study, what they mean going forward, and answering audience questions.Β
They have now made this available to watch online - see more: https://meassociation.org.uk/cdgk
#MECFS
On the left is a photo of Dr. Jonas Bergquist. On the right is a photo of Dr. Chris Armstrong, smiling and dressed in a blue shirt. Text below the images reads: βNew publication: Steroid Dynamics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Case-Control Study using Ultra Performance Supercritical Fluid Chromatography Tandem Mass Spectrometry.β
ICYMI: OMF's research centers in Uppsala and Melbourne published a study of steroid hormones. The study identified changes in steroid-steroid relationships that indicate there is a dysfunction in HPA axis function and progestogen pathways.
π ow.ly/Hh1z50WvrLb
"A woman living with a disease that causes extreme fatigue has thanked the government for increasing support for those with the condition."
www.bbc.co.uk/news/article...
If she's been a nurse for nearly 40 years, let's hope she hasn't got that long before she retires! π€ Good riddance to her ignorance & cruelty. Most sick people enter hospital for appropriate testing & treatment to alleviate their suffering. No such luck for #pwME
So great to hear of this upcoming Stanford ME/CFS Molecular Basis Symposium in September, shared by Ron Davis on the other app.
Abstract: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex disease of unknown etiology that affects multiple organ systems. Although there is no established treatment or diagnostic test for ME/CFS yet, studies have consistently demonstrated impaired cerebral blood flow (CBF) and blood flow regulation in ME/CFS. In this study, we measured red blood cell (RBC) velocity in microfluidic capillaries at varied oxygen tensions (PO2) and showed that, compared to RBCs from heathy controls, RBCs from ME/CFS exhibit compromised capillary velocity in response to reduced PO2. To examine whether such PO2-regulated RBC capillary velocity could be used to assess or diagnose ME/CFS, we conducted receiver operator characteristic (ROC) analysis and used machine learning (ML) to analyze various features of PO2-regulated RBC capillary velocity. We found that velocity slope-based classifiers were highly accurate, sensitive and specific (i.e., 77.8%, 76% and 90% respectively) in ME/CFS classification. Furthermore, we demonstrated this RBC-based microfluidic approach can be used to evaluate potential drugs (i.e., salmeterol xinafoate and xanomeline) for improving RBC capillary velocity in ME/CFS. These findings highlight previously unrecognized roles of RBCs in the pathophysiology of ME/CFS and suggest a potential RBC-based test for ME/CFS diagnosis.
US research involving Ron Davis:
Microfluidic assessment of PO2-regulated RBC capillary velocity in ME/CFS
www.sciencedirect.com/science/arti...
"findings highlight previously unrecognized roles of RBCs in the pathophysiology of #MECFS & suggest a potential RBC-based test for ME/ #CFS diagnosis"
1) In a new preview video, Dr. Yarred Younger from the University of Alabama says he found evidence that ME/CFS patients have more microglia cell activation in their brains than healthy controls.
His theory is that chronic brain inflammation is driving symptoms in ME/CFS.
Really proud of my team for getting this out. It has been a heavy lift. When we opened the Cohen Center for Recovery from Complex Chronic Illness, we wanted to create a place that could provide the very best of care for people with #LongCOVID, #MECFS,
www.beckershospitalreview.com/quality/pati...
1/
1) In a new pre-print, the lab of Bhupesh Prusty reports that antibodies (IgG) from ME/CFS patients cause mitochondrial fragmentation in endothelial cells.
This was not seen in antibodies from MS patients or healthy controls.
Image of Chris Ponting next to quote "This is a wakeup call. These extraordinary results speak the language of people with ME/CFS, often recounting people's ME/CFS symptoms. DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research"
"DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research.β - Prof Chris Ponting (DecodeME Investigator).
We encourage researchers to explore and build on our findings. Apply for access to our rich dataset now shorturl.at/F8aOM
Prusty's new pre-print is out. Please somebody apply for MRC funding to test this in a replica study. We know from observation the mitochondria are affected. This . . . could be how. #Research #ME #PlanForME
www.medrxiv.org/content/10.1...
I spoke with Profiessor Chris Ponting @cgatist.bsky.social about the DecodeME findings, which reported eight "genetic signals" in people with ME/CFS related to the nervous and immune systems: www.youtube.com/watch?v=CGUm...
A blog explaining DecodeME's remarkable findings. (Reproduced from the original blog I wrote for DecodeME's website). In case you need another look.
mecfsresearchreview.me/2025/08/11/d...
Found a paper on NAD+. With Curcumin, I am currently β¬οΈdosages of Nicotinamide Riboside instead (it's NAD+ precusor VitB3- better 4 immune function?) Niacin (histamineπ©) deficiency can cause cognitive impairment. Not yet sure if plain Nicotinamide is ok for MCAS pmc.ncbi.nlm.nih.gov/articles/PMC...
Thought of 1 more thing. @itsmepz.bsky.social makes a good point about LDN (which I don't think I would tolerate), as I get terrible cognition if I catch Epstein Barr & it's left undiagnosed & untreated. Get rid of infections.
Hope you get lots of answers as a difficult question. Depends on cause of brain fog. Phosphatidylcholine supplement supports acetylcholine production for cognitive function, Curcumin/Turmeric will bring down brain inflamation if that's the cause of fog. could need Vit B12, low Estrogen levels. etc.
Natasha Devonβs LBC phone-in on #MECFS (38 mins).
Callers discuss their experience, including stigma and medical gaslighting, as well as their thoughts on the largest genetic study to date. @natashadevon.bsky.social
youtu.be/-2XxcsUXRJs?...
I still have tears streaming down my face after reading this brilliantly written article, learning what they did to Sarah. I hope many many thousands of people get to see the article, and what they did, too!
Thanks so much. Found it invaluable information without the RS no's. Let's hope it will do some good with those hospitals who are currently abusing patients.
Have you seen anywhere Naomi please people quoting RS marker numbers for the 8/9 genes, because all the genes appear on 23andme raw data, but lots of lines for each gene name? I'm guessing it's only one marker, not all e.g. 57 of the same gene name? Didn't see id. marker nos on DecodeME website. x
Grateful for you posting this Naomi as I'm not in a position to spend too much time on socials or research to fully understand what's going on. David Putrino's post yesterday was great too.
Thoughts & prayers π to the most severely affected members of the community today. #SevereMECFSAwarenessDay
I was asked about my opinion on this recent study into #MECFS and I wanted to share here as well. First and foremost, sincere congratulations to the research team for some stellar work. I will never stop cheering for groups that are working to uncover the biological 1/
infections out of me every month or so. From the 96 lines I have 24 x AA's & 2 x AG's. I'm assuming it's the same as how Methylation results work. In that an AA is a mutation & a single A is an SNP??
Checked my raw data on 23andme to see if I could see any of these genes. Only checked RABGAP1L so far & there are 96 lines of RABGAP1L! So not sure if all of those lines are relevant? I don't clear any infections naturally, so I know I have a major problem. Homotoxicologists identify & pull several
Professor Ponting did not hold back about the stigma of ME and lack of funding for research. Thank you @abrokenbattery.bsky.social. You must be shattered.