Ella Inez
@ellainez.bsky.social
Waiting to see the end of the greatest MEdical scandal of the century
ME/CFS 🧠
ME/CFS 🧠
Reposted by Ella Inez
Interesting study & technology.
Hopefully it becomes widely available for clinical practice.
Blood Flow to the Head in a Person With Myalgic Encephalomyelitis Experiencing Postexertional Malaise: A Case Report
journals.lww.com/cptj/abstrac...
#MyalgicEncephalomyelitis #PwME #MEcfs #CFS
Hopefully it becomes widely available for clinical practice.
Blood Flow to the Head in a Person With Myalgic Encephalomyelitis Experiencing Postexertional Malaise: A Case Report
journals.lww.com/cptj/abstrac...
#MyalgicEncephalomyelitis #PwME #MEcfs #CFS
October 30, 2025 at 1:46 AM
Interesting study & technology.
Hopefully it becomes widely available for clinical practice.
Blood Flow to the Head in a Person With Myalgic Encephalomyelitis Experiencing Postexertional Malaise: A Case Report
journals.lww.com/cptj/abstrac...
#MyalgicEncephalomyelitis #PwME #MEcfs #CFS
Hopefully it becomes widely available for clinical practice.
Blood Flow to the Head in a Person With Myalgic Encephalomyelitis Experiencing Postexertional Malaise: A Case Report
journals.lww.com/cptj/abstrac...
#MyalgicEncephalomyelitis #PwME #MEcfs #CFS
Reposted by Ella Inez
"After more than a decade of engaging in shameless bothsidesism, whataboutism, and fanatical, greed-driven appeals to far-right eyeballs, America’s corporate, legacy media appears poised to fall victim to the grave, fascist threat it helped bring about"
zeteo.com/p/the-maga-f...
zeteo.com/p/the-maga-f...
October 29, 2025 at 12:10 AM
"After more than a decade of engaging in shameless bothsidesism, whataboutism, and fanatical, greed-driven appeals to far-right eyeballs, America’s corporate, legacy media appears poised to fall victim to the grave, fascist threat it helped bring about"
zeteo.com/p/the-maga-f...
zeteo.com/p/the-maga-f...
Reposted by Ella Inez
I didn't like how I'd get angry quickly, frustrated and anxious, unkind in the things I'd think or say.
Turns out, this is very likely a symptom of ME/CFS. Such fun!
www.youtube.com/watch?v=Sg5q...
#MECFS #pwME #LongCovid #MentalHealth
Turns out, this is very likely a symptom of ME/CFS. Such fun!
www.youtube.com/watch?v=Sg5q...
#MECFS #pwME #LongCovid #MentalHealth
076 - How brain inflammation causes anxiety
YouTube video by Jarred Younger, PhD
www.youtube.com
October 28, 2025 at 9:30 AM
I didn't like how I'd get angry quickly, frustrated and anxious, unkind in the things I'd think or say.
Turns out, this is very likely a symptom of ME/CFS. Such fun!
www.youtube.com/watch?v=Sg5q...
#MECFS #pwME #LongCovid #MentalHealth
Turns out, this is very likely a symptom of ME/CFS. Such fun!
www.youtube.com/watch?v=Sg5q...
#MECFS #pwME #LongCovid #MentalHealth
Reposted by Ella Inez
"Trial By Error: Some Thoughts on Ten Years of Trial By Error" By David Tuller @davetuller1.bsky.social (25 October 2025)
virology.ws/2025/10/25/t...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
virology.ws/2025/10/25/t...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
October 25, 2025 at 7:41 PM
"Trial By Error: Some Thoughts on Ten Years of Trial By Error" By David Tuller @davetuller1.bsky.social (25 October 2025)
virology.ws/2025/10/25/t...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
virology.ws/2025/10/25/t...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
Reposted by Ella Inez
1) Remember the intramural NIH study about effort preference in ME/CFS?
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
October 17, 2025 at 3:10 PM
1) Remember the intramural NIH study about effort preference in ME/CFS?
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
Reposted by Ella Inez
1) During the Stanford Community Symposium, Dr. Randall Peterson explained how his team at the University of Utah has recreated the Itaconate shunt model of ME/CFS in zebrafish.
They found that these fish swim less and have reduced oxygen consumption.
They found that these fish swim less and have reduced oxygen consumption.
October 18, 2025 at 8:07 AM
1) During the Stanford Community Symposium, Dr. Randall Peterson explained how his team at the University of Utah has recreated the Itaconate shunt model of ME/CFS in zebrafish.
They found that these fish swim less and have reduced oxygen consumption.
They found that these fish swim less and have reduced oxygen consumption.
Reposted by Ella Inez
Dr. Fridbjörn Sigurdsson was a medical oncologist before focusing on ME/CFS. During the 2025 Invest in ME conference, he said:
"What I have learned is that most of the patients that I have seen with ME are so much sicker than my cancer patients."
"What I have learned is that most of the patients that I have seen with ME are so much sicker than my cancer patients."
#IIMEC17 11 Clinicians' Panel Discussion
Open Panel Discussion
Chaired by Professor Andrew Wilson, UEA, UK
More at https://investinme.org/iimec17-andrewwilson.shtml
youtu.be
October 16, 2025 at 4:51 PM
Dr. Fridbjörn Sigurdsson was a medical oncologist before focusing on ME/CFS. During the 2025 Invest in ME conference, he said:
"What I have learned is that most of the patients that I have seen with ME are so much sicker than my cancer patients."
"What I have learned is that most of the patients that I have seen with ME are so much sicker than my cancer patients."
Reposted by Ella Inez
Reminder: The DecodeME team want to do a related genetic study with the samples they have collected already but unfortunately don’t have the funding yet:
megenetics.org.uk/our-projects...
#MEcfs #PwME #CFS
megenetics.org.uk/our-projects...
#MEcfs #PwME #CFS
October 13, 2025 at 2:19 PM
Reminder: The DecodeME team want to do a related genetic study with the samples they have collected already but unfortunately don’t have the funding yet:
megenetics.org.uk/our-projects...
#MEcfs #PwME #CFS
megenetics.org.uk/our-projects...
#MEcfs #PwME #CFS
Oxaloacetate for ME/CFS, does it help? I'm hoping it either works brilliantly or not at all because £400 a bottle is insane.
September 27, 2025 at 4:55 PM
Oxaloacetate for ME/CFS, does it help? I'm hoping it either works brilliantly or not at all because £400 a bottle is insane.
Reposted by Ella Inez
The Norwegian ME Association is raising funds for a clinical trial on Daratumumab as a potential treatment for ME. The study is led by the ME research, Fluge, Mella et al. Target: US$ 2.6m/ Euro 2.2m/ £1.9m. ME-fondet is accepting international donations.
tinyurl.com/3h3x9mz6
tinyurl.com/3h3x9mz6
English The ME-fund
ME-fondet is a Norwegian non-profit foundation dedicated to supporting biomedical research on Myalgic Encephalomyelitis (ME/CFS). We raise funds for high-quality, independent studies that seek to unco...
tinyurl.com
September 17, 2025 at 12:55 PM
The Norwegian ME Association is raising funds for a clinical trial on Daratumumab as a potential treatment for ME. The study is led by the ME research, Fluge, Mella et al. Target: US$ 2.6m/ Euro 2.2m/ £1.9m. ME-fondet is accepting international donations.
tinyurl.com/3h3x9mz6
tinyurl.com/3h3x9mz6
youtu.be/wuzmYJxM-r0?...
'There are so many regions...it's a brain-wide issue...safe to say the ME/CFS brain is an inflamed brain'
'There are so many regions...it's a brain-wide issue...safe to say the ME/CFS brain is an inflamed brain'
067 - New results: The ME/CFS brain is inflamed
YouTube video by Jarred Younger, PhD
youtu.be
August 11, 2025 at 5:53 PM
youtu.be/wuzmYJxM-r0?...
'There are so many regions...it's a brain-wide issue...safe to say the ME/CFS brain is an inflamed brain'
'There are so many regions...it's a brain-wide issue...safe to say the ME/CFS brain is an inflamed brain'
'IgGs from ME/CFS patients carry a chronic protective stress response that promotes mitochondrial adaptation via fragmentation'
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...
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 5:32 PM
'IgGs from ME/CFS patients carry a chronic protective stress response that promotes mitochondrial adaptation via fragmentation'
Reposted by Ella Inez
Today we honor Severe ME.
We hear you.
We see you.
We care.
Today is a day of awareness & visibility for the estimated 25% of people living with Severe ME
#SevereME #SevereMEDay2025
We hear you.
We see you.
We care.
Today is a day of awareness & visibility for the estimated 25% of people living with Severe ME
#SevereME #SevereMEDay2025
August 8, 2025 at 1:12 PM
Today we honor Severe ME.
We hear you.
We see you.
We care.
Today is a day of awareness & visibility for the estimated 25% of people living with Severe ME
#SevereME #SevereMEDay2025
We hear you.
We see you.
We care.
Today is a day of awareness & visibility for the estimated 25% of people living with Severe ME
#SevereME #SevereMEDay2025
Blue pigs? What in the Parable of the Sower? Booktok warned us.
www.independent.co.uk/news/world/a...
www.independent.co.uk/news/world/a...
Warnings issued in California over wild pigs found with blue meat
The California Department of Fish and Wildlife said it had received reports of the bizarre occurrence in March
www.independent.co.uk
August 8, 2025 at 8:18 PM
Blue pigs? What in the Parable of the Sower? Booktok warned us.
www.independent.co.uk/news/world/a...
www.independent.co.uk/news/world/a...
Reposted by Ella Inez
The #DecodeME study is terrific - a milestone in biomedical science. But headlines like “ME is real” are not good journalism.
ME was already scientifically established by the mid-1990s. And clinical evidence has supported its reality since the 1950s.
So why do we get these headlines?
#pwME
1/3
ME was already scientifically established by the mid-1990s. And clinical evidence has supported its reality since the 1950s.
So why do we get these headlines?
#pwME
1/3
August 7, 2025 at 5:41 PM
Reposted by Ella Inez
Key genetic differences involved in the immune and nervous systems have been found in people with chronic fatigue syndrome.
People with chronic fatigue syndrome, also known as myalgic encephalomyelitis, appear to have eight genetic signals that differ from those without the condition
www.newscientist.com
August 6, 2025 at 6:40 PM
Key genetic differences involved in the immune and nervous systems have been found in people with chronic fatigue syndrome.
www.decodeme.org.uk/x-marks-the-...
'DecodeME showed that immunological and neurological processes are likely to play a part in ME/CFS'
‘These results are groundbreaking. With DecodeME, we have gone from knowing next to nothing about the causes of ME/CFS, to giving researchers clear targets.’
'DecodeME showed that immunological and neurological processes are likely to play a part in ME/CFS'
‘These results are groundbreaking. With DecodeME, we have gone from knowing next to nothing about the causes of ME/CFS, to giving researchers clear targets.’
X marks the spot where ME/CFS biology can be discovered - DecodeME
06 August 2025 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 the...
www.decodeme.org.uk
August 6, 2025 at 6:26 PM
www.decodeme.org.uk/x-marks-the-...
'DecodeME showed that immunological and neurological processes are likely to play a part in ME/CFS'
‘These results are groundbreaking. With DecodeME, we have gone from knowing next to nothing about the causes of ME/CFS, to giving researchers clear targets.’
'DecodeME showed that immunological and neurological processes are likely to play a part in ME/CFS'
‘These results are groundbreaking. With DecodeME, we have gone from knowing next to nothing about the causes of ME/CFS, to giving researchers clear targets.’
This sounds major.
'SMPDL3B emerges as a key biomarker for ME severity and immune dysregulation, with its activity influenced by hormonal and PI-PLC regulation'
'SMPDL3B emerges as a key biomarker for ME severity and immune dysregulation, with its activity influenced by hormonal and PI-PLC regulation'
OMF’s Collaborative Center at Montreal, directed by Dr. Alain Moreau, published a paper on their study looking at SMPDL3B as a biomarker and potential therapeutic target in a subset of people with #MECFS.
👉 Read the paper summary: ow.ly/QvsT50WpZXl.
👉 Read the paper summary: ow.ly/QvsT50WpZXl.
July 15, 2025 at 5:02 PM
This sounds major.
'SMPDL3B emerges as a key biomarker for ME severity and immune dysregulation, with its activity influenced by hormonal and PI-PLC regulation'
'SMPDL3B emerges as a key biomarker for ME severity and immune dysregulation, with its activity influenced by hormonal and PI-PLC regulation'
I'm starting HBOT today for ME /CFS and SFN. What are your experiences with it, good or bad? I think I'm already getting my hopes up before it's even started 😬
July 9, 2025 at 4:16 PM
I'm starting HBOT today for ME /CFS and SFN. What are your experiences with it, good or bad? I think I'm already getting my hopes up before it's even started 😬
Reposted by Ella Inez
🎥 Video Update: A Muscle Biopsy Study to Understand the Molecular Mechanisms of #PEM
👉 Watch the interview and learn more about this study: ow.ly/leAU50Wkrk8.
👉 Watch the interview and learn more about this study: ow.ly/leAU50Wkrk8.
July 3, 2025 at 3:25 PM
🎥 Video Update: A Muscle Biopsy Study to Understand the Molecular Mechanisms of #PEM
👉 Watch the interview and learn more about this study: ow.ly/leAU50Wkrk8.
👉 Watch the interview and learn more about this study: ow.ly/leAU50Wkrk8.
Reposted by Ella Inez
Our deep dive of the biomarker study by Ponting:
1. They clearly state it's a disease with strong female bias.
2. It's strength is that it's a large study that identifies population ave differences. 131,303 contols, 1455 ME cases
1/13
www.embopress.org/doi/full/10....
1. They clearly state it's a disease with strong female bias.
2. It's strength is that it's a large study that identifies population ave differences. 131,303 contols, 1455 ME cases
1/13
www.embopress.org/doi/full/10....
June 21, 2025 at 2:38 PM
Our deep dive of the biomarker study by Ponting:
1. They clearly state it's a disease with strong female bias.
2. It's strength is that it's a large study that identifies population ave differences. 131,303 contols, 1455 ME cases
1/13
www.embopress.org/doi/full/10....
1. They clearly state it's a disease with strong female bias.
2. It's strength is that it's a large study that identifies population ave differences. 131,303 contols, 1455 ME cases
1/13
www.embopress.org/doi/full/10....
Reposted by Ella Inez
📢 Now published:
www.embopress.org/doi/full/10.....
Since the preprint, we replicated 9 of 14 traits in All of Us & showed that #pwME with PEM-like symptoms have stronger biomarker differences.
bsky.app/profile/cgat...
www.embopress.org/doi/full/10.....
Since the preprint, we replicated 9 of 14 traits in All of Us & showed that #pwME with PEM-like symptoms have stronger biomarker differences.
bsky.app/profile/cgat...
June 20, 2025 at 5:44 AM
📢 Now published:
www.embopress.org/doi/full/10.....
Since the preprint, we replicated 9 of 14 traits in All of Us & showed that #pwME with PEM-like symptoms have stronger biomarker differences.
bsky.app/profile/cgat...
www.embopress.org/doi/full/10.....
Since the preprint, we replicated 9 of 14 traits in All of Us & showed that #pwME with PEM-like symptoms have stronger biomarker differences.
bsky.app/profile/cgat...
Perfectly said.
Highlights from Prof Chris Ponting’s presentation to the joint APPG on ME & Long Covid: He made clear that graded exercise is harmful, and warned that despite rising numbers, there’s still no research strategy, no effective treatments, and almost no funding. #MECFS #LongCovid
June 18, 2025 at 12:12 PM
Perfectly said.
Reposted by Ella Inez
“there is a reservoir of the HIV in the body, capable of reactivation, that neither the immune system nor drugs can tackle. Now researchers…have demonstrated a way to make the virus visible, paving the way to fully clear it from the body.” 🤯
If pans out, could cure all cancers, Long Covid, HSV too!
If pans out, could cure all cancers, Long Covid, HSV too!
June 5, 2025 at 4:50 PM
“there is a reservoir of the HIV in the body, capable of reactivation, that neither the immune system nor drugs can tackle. Now researchers…have demonstrated a way to make the virus visible, paving the way to fully clear it from the body.” 🤯
If pans out, could cure all cancers, Long Covid, HSV too!
If pans out, could cure all cancers, Long Covid, HSV too!