Joanne Bright
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Joanne Bright
@joannebright.bsky.social
43 followers 84 following 38 posts
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!
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Reposted by Joanne Bright
abrokenbattery.bsky.social
Today’s 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?...
Westminster Hall Debate on Support for People with ME/CFS - November 2025
YouTube video by Broken Battery
youtu.be
November 19, 2025 at 6:25 PM
Reposted by Joanne Bright
tomkindlon.bsky.social
This was very popular a few months ago so I thought I would repost it

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
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. —-
November 15, 2025 at 9:50 PM
Reposted by Joanne Bright
mecfsskeptic.bsky.social
1) Interesting figure showing where immune cells are located in the human body (mostly in the bone marrow and lymphatic system).
November 7, 2025 at 8:31 AM
Reposted by Joanne Bright
meassociation.org.uk
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. 

They have now made this available to watch online - see more: https://meassociation.org.uk/cdgk

#MECFS
Watch the Decode ME Results Webinar online - The ME Association
The initial results for Decode ME, the largest genetic study […]
meassociation.org.uk
August 26, 2025 at 8:51 AM
Reposted by Joanne Bright
openmedf.bsky.social
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.

👉 ow.ly/Hh1z50WvrLb
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: “New publication: Steroid Dynamics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Case-Control Study using Ultra Performance Supercritical Fluid Chromatography Tandem Mass Spectrometry.”
August 25, 2025 at 2:45 PM
Reposted by Joanne Bright
rfh1955.bsky.social
"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...
ME patient from Sowerby Bridge welcomes government care plan
Ami Hallgarth says support has been
www.bbc.co.uk
August 21, 2025 at 1:43 PM
Reposted by Joanne Bright
bhanlon15.bsky.social
So great to hear of this upcoming Stanford ME/CFS Molecular Basis Symposium in September, shared by Ron Davis on the other app.
August 14, 2025 at 3:20 PM
Reposted by Joanne Bright
tomkindlon.bsky.social
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"
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.
August 13, 2025 at 7:09 PM
Reposted by Joanne Bright
mecfsskeptic.bsky.social
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.
August 14, 2025 at 3:42 PM
Reposted by Joanne Bright
putrinolab.bsky.social
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/
Mount Sinai publishes 1st US guide for infection-linked chronic illnesses - Becker's Hospital Review | Healthcare News & Analysis
New York City-based Mount Sinai Health System has released the country’s first clinical manual for treating infection-associated chronic illnesses, according to an Aug. 13 news release.  The clinical ...
www.beckershospitalreview.com
August 14, 2025 at 12:30 AM
Reposted by Joanne Bright
mecfsskeptic.bsky.social
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.

August 14, 2025 at 9:30 AM
Reposted by Joanne Bright
decodemestudy.bsky.social
"DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research.” - 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
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"
August 12, 2025 at 10:11 AM
Reposted by Joanne Bright
swastrosarah.bsky.social
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...
ME/CFS and PASC Patient-Derived Immunoglobulin Complexes Disrupt Mitochondrial Function and Alter Inflammatory Marker Secretion
Autoimmunity is a key clinical feature in both post-infectious Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and Post-Acute Sequelae of COVID (PASC). Passive transfer of immunoglobulin...
www.medrxiv.org
August 11, 2025 at 6:45 AM
Reposted by Joanne Bright
davetuller1.bsky.social
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...
Interview with Professor Chris Ponting about the DecodeME results.
YouTube video by David M Tuller
www.youtube.com
August 11, 2025 at 4:31 PM
Reposted by Joanne Bright
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...
DecodeME: X marks the spot where ME/CFS biology can be discovered
Scientists, people with ME/CFS, and their charities came together to create DecodeME, the world’s biggest ME/CFS study – and its results are striking. 18,000 people with ME/CFS gave their DNA…
mecfsresearchreview.me
August 11, 2025 at 7:32 PM
Reposted by Joanne Bright
abrokenbattery.bsky.social
Natasha Devon’s 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?...
LBC - Natasha Devon Phone In - DecodeME Results
YouTube video by Broken Battery
youtu.be
August 9, 2025 at 7:36 PM
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!
swastrosarah.bsky.social sarah boothby @swastrosarah.bsky.social · Aug 10
Thanks to Emily Dugan and the Sunday Times for exposing this aspect of how Maeve died from ME. A Devon County Council cover up. Maeve was taking them to judical review, dying in the attempt.
Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them.
1/4
August 10, 2025 at 10:05 AM
Thoughts & prayers 🙏 to the most severely affected members of the community today. #SevereMECFSAwarenessDay
August 8, 2025 at 7:08 AM
Reposted by Joanne Bright
putrinolab.bsky.social
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/
mecfsskeptic.bsky.social ME/CFS Science @mecfsskeptic.bsky.social · Aug 7
1) The DecodeME study compared DNA of ca. 15,000 ME/CFS patients and 250,000 controls and found significant differences in 8 regions of our genome.

The Manhattan plot below shows the genes and chromosomes involved.

Let’s unpack the results 🧵
August 7, 2025 at 6:19 PM
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
August 7, 2025 at 4:56 PM
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.
abrokenbattery.bsky.social Adam @abrokenbattery.bsky.social · Aug 7
BBC Radio 4’s Today reports on the results of the DecodeME study. Professor Chris Ponting says the largest genetic study of MECFS reveals eight DNA regions linked to the disease. 19-year-old Lucy describes years of not being believed.

youtu.be/O4wLpiRXKKs?...
BBC Today -  DecodeME results
YouTube video by Broken Battery
youtu.be
August 7, 2025 at 2:25 PM
Reposted by Joanne Bright
abrokenbattery.bsky.social
Channel 4 News – full segment on DecodeME results (9 mins) — the world’s largest genetic study of #MECFS — identifies eight genetic differences. Includes interviews with Prof Chris Ponting, a patient participant, Sonia Chowdhury, and MP Tessa Munt.

youtu.be/c5i_K3QEbCI?...
Channel 4 News DecodeME results
YouTube video by Broken Battery
youtu.be
August 7, 2025 at 3:06 AM
Reposted by Joanne Bright
theguardian.com
Scientists find link between genes and ME/chronic fatigue syndrome
Scientists find link between genes and ME/chronic fatigue syndrome
Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness Scientists have found the first robust evidence that people’s genes affect their chances of developing myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a mysterious and debilitating illness that has been neglected and dismissed for decades by many in the medical community. Early findings from the world’s largest study into the genetics of the condition pinpointed eight regions of the human genome that were substantially different in people with an ME/CFS diagnosis compared to those without the illness. Continue reading...
www.theguardian.com
August 6, 2025 at 6:15 PM
Reposted by Joanne Bright
meownersclub.bsky.social
My response to the BPS crowd on this really important news. And MANY MANY thanks to @chrisponting.bsky.social and his team. What a triumph; what a relief!
A bulldog wearing a party hat is sticking his tongue out at the the psychiatrists and one psychologist who accused people with #ME of illness-faking. The caption says “The DECODE ME study has found significant evidence that ME is an organic illness and NOT PSYCHOLOGICAL” The cartoon maker is #FanningTheFlames
August 6, 2025 at 6:35 PM