Ness
@nessau.bsky.social
Vegetation ecologist & research laboratory manager - on pause (MECFS / LC). Also: fire behaviour, libraries, cultural preservation, music, guinea pigs, TNR cats, sunsets.
AUS
AUS
Reposted by Ness
Edinburgh University PhD 3 year funded fellowship. Closing date 16th January 2026: "Personalised blood-based biomarkers for ME/CFS symptom severity"
www.findaphd.com/phds/project...
Screenshot from Science for ME weekly update
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
www.findaphd.com/phds/project...
Screenshot from Science for ME weekly update
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
November 10, 2025 at 1:18 AM
Edinburgh University PhD 3 year funded fellowship. Closing date 16th January 2026: "Personalised blood-based biomarkers for ME/CFS symptom severity"
www.findaphd.com/phds/project...
Screenshot from Science for ME weekly update
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
www.findaphd.com/phds/project...
Screenshot from Science for ME weekly update
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Reposted by Ness
This clip from 2018 perfectly captures just how passionate @davetuller1.bsky.social is and how shocked he was by the way the PACE trial was defended.
His crowd funding has just 1 day to go and he’s ~$10k from his target. I’ve just donated again so he can carry on doing his important work
His crowd funding has just 1 day to go and he’s ~$10k from his target. I’ve just donated again so he can carry on doing his important work
November 6, 2025 at 10:15 AM
This clip from 2018 perfectly captures just how passionate @davetuller1.bsky.social is and how shocked he was by the way the PACE trial was defended.
His crowd funding has just 1 day to go and he’s ~$10k from his target. I’ve just donated again so he can carry on doing his important work
His crowd funding has just 1 day to go and he’s ~$10k from his target. I’ve just donated again so he can carry on doing his important work
Reposted by Ness
#MECFS pals—
There’s a study going on to assess whether FUNCAP can be used to capture PEM in the moment, in addition to its original purpose to capture the average impact PEM has on you.
You take their surveys twice, once during PEM and once after you recover.
Sign up at the link below!
There’s a study going on to assess whether FUNCAP can be used to capture PEM in the moment, in addition to its original purpose to capture the average impact PEM has on you.
You take their surveys twice, once during PEM and once after you recover.
Sign up at the link below!
Oh no 😭
I should def be encouraging you to rest, but if you find you can’t, have you heard about this study that wants to see whether FUNCAP can measure PEM? Looking for people to take it while in PEM—you sign up and then they email it to you.
redcap.unimelb.edu.au/surveys/?s=W...
I should def be encouraging you to rest, but if you find you can’t, have you heard about this study that wants to see whether FUNCAP can measure PEM? Looking for people to take it while in PEM—you sign up and then they email it to you.
redcap.unimelb.edu.au/surveys/?s=W...
Pre-Screening Survey
redcap.unimelb.edu.au
October 29, 2025 at 3:30 AM
#MECFS pals—
There’s a study going on to assess whether FUNCAP can be used to capture PEM in the moment, in addition to its original purpose to capture the average impact PEM has on you.
You take their surveys twice, once during PEM and once after you recover.
Sign up at the link below!
There’s a study going on to assess whether FUNCAP can be used to capture PEM in the moment, in addition to its original purpose to capture the average impact PEM has on you.
You take their surveys twice, once during PEM and once after you recover.
Sign up at the link below!
Reposted by Ness
For several years, I have spent my time busting terrible and even fraudulent research into ME, ME/CFS, Long COVID, etc. If this crowdfunding works out, I will do one more in the spring and then retire from Berkeley. If you'd like to support my work, here's how: crowdfund.berkeley.edu/project/47768
David Tuller's Trial by Error Fall 2025
Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Fall 2025. Your gift will make a difference!
crowdfund.berkeley.edu
October 22, 2025 at 10:20 AM
For several years, I have spent my time busting terrible and even fraudulent research into ME, ME/CFS, Long COVID, etc. If this crowdfunding works out, I will do one more in the spring and then retire from Berkeley. If you'd like to support my work, here's how: crowdfund.berkeley.edu/project/47768
Reposted by Ness
❗Help us spread ME/CFS awareness❗
People living with #ME/CFS are severely ill, yet often don't receive welfare, specialised medical treatment and accessible education opportunities.
Furthermore, sufficient awareness in the areas of politics, healthcare and research is lacking.
People living with #ME/CFS are severely ill, yet often don't receive welfare, specialised medical treatment and accessible education opportunities.
Furthermore, sufficient awareness in the areas of politics, healthcare and research is lacking.
September 18, 2025 at 6:17 PM
❗Help us spread ME/CFS awareness❗
People living with #ME/CFS are severely ill, yet often don't receive welfare, specialised medical treatment and accessible education opportunities.
Furthermore, sufficient awareness in the areas of politics, healthcare and research is lacking.
People living with #ME/CFS are severely ill, yet often don't receive welfare, specialised medical treatment and accessible education opportunities.
Furthermore, sufficient awareness in the areas of politics, healthcare and research is lacking.
Reposted by Ness
I recently wrote a reflective piece for the Polyphony blog @the-polyphony.bsky.social explaining the motivations behind my work on ME, and what I think a medical humanities approach has to offer this field - and health research more generally
thepolyphony.org/2025/10/09/p...
thepolyphony.org/2025/10/09/p...
Privilege and Pain: Why the Medical Humanities Matter
Katharine Cheston reflects on her own experience of ME and the need for a more caring, curious, and compassionate approach to health research.
thepolyphony.org
October 13, 2025 at 10:37 AM
I recently wrote a reflective piece for the Polyphony blog @the-polyphony.bsky.social explaining the motivations behind my work on ME, and what I think a medical humanities approach has to offer this field - and health research more generally
thepolyphony.org/2025/10/09/p...
thepolyphony.org/2025/10/09/p...
Reposted by Ness
Please Help David Tuller @davetuller1.bsky.social , Our Champion!
crowdfund.berkeley.edu/project/47768
From the October 2025 AMMES Newsletter
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
crowdfund.berkeley.edu/project/47768
From the October 2025 AMMES Newsletter
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
October 11, 2025 at 12:39 AM
Please Help David Tuller @davetuller1.bsky.social , Our Champion!
crowdfund.berkeley.edu/project/47768
From the October 2025 AMMES Newsletter
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
crowdfund.berkeley.edu/project/47768
From the October 2025 AMMES Newsletter
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
Reposted by Ness
The curse of Myalgic Encephalomyelitis is that you can't rest.
There is no recuperation, only the passage of time.
Not just disability: A heaviness to the infirmity.
The needed pause isn't an invigorating rest:
It's a state of constant, leaden unrest.
#LongCOVID Day 1121
There is no recuperation, only the passage of time.
Not just disability: A heaviness to the infirmity.
The needed pause isn't an invigorating rest:
It's a state of constant, leaden unrest.
#LongCOVID Day 1121
October 4, 2025 at 5:03 AM
The curse of Myalgic Encephalomyelitis is that you can't rest.
There is no recuperation, only the passage of time.
Not just disability: A heaviness to the infirmity.
The needed pause isn't an invigorating rest:
It's a state of constant, leaden unrest.
#LongCOVID Day 1121
There is no recuperation, only the passage of time.
Not just disability: A heaviness to the infirmity.
The needed pause isn't an invigorating rest:
It's a state of constant, leaden unrest.
#LongCOVID Day 1121
Reposted by Ness
Think you might enjoy this excellent interview and what Katharine Cheston has done (is doing) with her returned health...
chroniclivingtherapy.com/katharine-ch...
chroniclivingtherapy.com/katharine-ch...
Katharine Cheston: exploring stigma, shame and illness - Chronic Living Therapy
Interview with Katharine Cheston, social/cultural researcher into the stigma and shame experienced by people with ME MECFS and similar illnesses
chroniclivingtherapy.com
September 27, 2025 at 11:00 PM
Think you might enjoy this excellent interview and what Katharine Cheston has done (is doing) with her returned health...
chroniclivingtherapy.com/katharine-ch...
chroniclivingtherapy.com/katharine-ch...
Reposted by Ness
#NEISvoid
Really important illustration of why defining PEM as just any worsening after exertion will result in a seriously confounded sample of people with and without ME, making it look like some people with PEM benefit from exercise.
Really important illustration of why defining PEM as just any worsening after exertion will result in a seriously confounded sample of people with and without ME, making it look like some people with PEM benefit from exercise.
30% of a sample of the general population in Germany said they had this PEM symptom:
Do you experience worsening of your fatigue/energy-related illness after minimal physical or mental effort?
Do you experience worsening of your fatigue/energy-related illness after minimal physical or mental effort?
1) Researchers translated the DePaul Symptom Questionnaire for Post-Exertional Malaise (DSQ-PEM) into German.
But the paper is mostly useful for showing how the general population and Long Covid patients score each of the PEM items of the questionnaire 👇
But the paper is mostly useful for showing how the general population and Long Covid patients score each of the PEM items of the questionnaire 👇
September 24, 2025 at 6:10 PM
#NEISvoid
Really important illustration of why defining PEM as just any worsening after exertion will result in a seriously confounded sample of people with and without ME, making it look like some people with PEM benefit from exercise.
Really important illustration of why defining PEM as just any worsening after exertion will result in a seriously confounded sample of people with and without ME, making it look like some people with PEM benefit from exercise.
Reposted by Ness
Bodleian Libraries, Oxford University
@bodleian.ox.ac.uk
@bodleian.ox.ac.uk
September 16, 2025 at 8:15 PM
Bodleian Libraries, Oxford University
@bodleian.ox.ac.uk
@bodleian.ox.ac.uk
Dr Robert Bartholomew, a University of Auckland sociologist, spoke to The Guardian:
“‘What happened at Heathrow is almost certainly an episode of mass psychogenic illness that is anxiety-based”, a position which was (admittedly more cautiously) backed by...
#MECFS @davidtull.bsky.social
1/
“‘What happened at Heathrow is almost certainly an episode of mass psychogenic illness that is anxiety-based”, a position which was (admittedly more cautiously) backed by...
#MECFS @davidtull.bsky.social
1/
Trial By Error: "Mass Psychogenic Illness" at Heathrow Airport--NOT! | Virology Blog
By David Tuller, DrPH On Monday afternoon, a bunch of people in Terminal 4 at Heathrow, London’s biggest airport, reported feeling ill. The reports led to c ...
virology.ws
September 17, 2025 at 2:54 PM
Dr Robert Bartholomew, a University of Auckland sociologist, spoke to The Guardian:
“‘What happened at Heathrow is almost certainly an episode of mass psychogenic illness that is anxiety-based”, a position which was (admittedly more cautiously) backed by...
#MECFS @davidtull.bsky.social
1/
“‘What happened at Heathrow is almost certainly an episode of mass psychogenic illness that is anxiety-based”, a position which was (admittedly more cautiously) backed by...
#MECFS @davidtull.bsky.social
1/
Reposted by Ness
On Thursday there will be a preliminary injunction against the hospital. Pls help by reading & sharing this 🙏 #SaveSanne
@georgemonbiot.bsky.social @swastrosarah.bsky.social @nelehelena.bsky.social @davetuller1.bsky.social @anilvanderzee.bsky.social @tomkindlon.bsky.social @janetdafoe.bsky.social
@georgemonbiot.bsky.social @swastrosarah.bsky.social @nelehelena.bsky.social @davetuller1.bsky.social @anilvanderzee.bsky.social @tomkindlon.bsky.social @janetdafoe.bsky.social
We also made English posts for the Global Chronicle about the horrible situation Sanne from The Netherlands is in. She's being denied total parenteral nutrition (TPN) by the hospital & her weight is dropping rapidly.
meglobalchronicle.wordpress.com/2025/09/16/i...
www.facebook.com/groups/TheME...
meglobalchronicle.wordpress.com/2025/09/16/i...
www.facebook.com/groups/TheME...
Is Sanne going to be the Dutch Maeve Boothby-O’Neill?
ME patient Sanne (38) denied life-saving treatment ⚖️ Lawyers are taking action this week. Your help is also needed! 38-year-old Sanne van Enckevort from Hegelsom (Limburg, The Netherlands) is seri…
meglobalchronicle.wordpress.com
September 16, 2025 at 7:32 PM
On Thursday there will be a preliminary injunction against the hospital. Pls help by reading & sharing this 🙏 #SaveSanne
@georgemonbiot.bsky.social @swastrosarah.bsky.social @nelehelena.bsky.social @davetuller1.bsky.social @anilvanderzee.bsky.social @tomkindlon.bsky.social @janetdafoe.bsky.social
@georgemonbiot.bsky.social @swastrosarah.bsky.social @nelehelena.bsky.social @davetuller1.bsky.social @anilvanderzee.bsky.social @tomkindlon.bsky.social @janetdafoe.bsky.social
Reposted by Ness
Members of the Melbourne West Papuan community at the PNG Independence Day market last weekend--so good to see the community included in the regional dance performance.
September 16, 2025 at 12:41 PM
Members of the Melbourne West Papuan community at the PNG Independence Day market last weekend--so good to see the community included in the regional dance performance.
Reposted by Ness
🚨 Are you in Melbourne, Victoria or even another state & able to help someone in desperate need?
Please see Anna’s post & article below!
You wouldn’t just be an angel, you’d get lots back too… a new loyal friend & housemate, rent, income for some caring.
#Melbourne #SOS #MECFS #Homeshare #Carers
Please see Anna’s post & article below!
You wouldn’t just be an angel, you’d get lots back too… a new loyal friend & housemate, rent, income for some caring.
#Melbourne #SOS #MECFS #Homeshare #Carers
Won’t someone take me in to escape #abuse?
Can pay a small rent/board, but you could get Carer Pension &/or Allowance if you provide some care.
Can provide meals & have care hours.
I don’t know why this is such a horrible arrangement - to rent a spare room.
www.thecanary.co/global/world...
Can pay a small rent/board, but you could get Carer Pension &/or Allowance if you provide some care.
Can provide meals & have care hours.
I don’t know why this is such a horrible arrangement - to rent a spare room.
www.thecanary.co/global/world...
Nearly a year on and severe ME patient Anna is still trapped in life-threatening domestic abuse
Nearly a year on and severe ME patient Anna is still trapped in life-threatening domestic abuse from Canary on 1 April 2025
www.thecanary.co
August 28, 2025 at 1:25 AM
🚨 Are you in Melbourne, Victoria or even another state & able to help someone in desperate need?
Please see Anna’s post & article below!
You wouldn’t just be an angel, you’d get lots back too… a new loyal friend & housemate, rent, income for some caring.
#Melbourne #SOS #MECFS #Homeshare #Carers
Please see Anna’s post & article below!
You wouldn’t just be an angel, you’d get lots back too… a new loyal friend & housemate, rent, income for some caring.
#Melbourne #SOS #MECFS #Homeshare #Carers
Reposted by Ness
Hey Australians. Get out to the rally nearest you today. We must show that there are far more Aussies who care about families having dozens of members murdered by a rogue state, who care about hundreds of thousands of dead, catastrophically injured, orphaned, starved *children*. #auspol
August 23, 2025 at 9:39 PM
Hey Australians. Get out to the rally nearest you today. We must show that there are far more Aussies who care about families having dozens of members murdered by a rogue state, who care about hundreds of thousands of dead, catastrophically injured, orphaned, starved *children*. #auspol
Reposted by Ness
What do these diseases have in common?
Asthma
Syphillis
Multiple Sclerosis
Myalgic Encephalomyelitis
Ulcerative colitis
High blood pressure
Stomach ulcers
Vaginal discharge
Huntingtons chorea
Asthma
Syphillis
Multiple Sclerosis
Myalgic Encephalomyelitis
Ulcerative colitis
High blood pressure
Stomach ulcers
Vaginal discharge
Huntingtons chorea
August 2, 2025 at 12:35 PM
What do these diseases have in common?
Asthma
Syphillis
Multiple Sclerosis
Myalgic Encephalomyelitis
Ulcerative colitis
High blood pressure
Stomach ulcers
Vaginal discharge
Huntingtons chorea
Asthma
Syphillis
Multiple Sclerosis
Myalgic Encephalomyelitis
Ulcerative colitis
High blood pressure
Stomach ulcers
Vaginal discharge
Huntingtons chorea
Reposted by Ness
This is now two reports in two weeks that ought to spell the end of the ridiculous welfare compliance system.
Hundreds of thousands of people are losing access to vital payments that they need to put food on the table - but Labor doesn’t seem to care.
www.news.com.au/national/pol...
Hundreds of thousands of people are losing access to vital payments that they need to put food on the table - but Labor doesn’t seem to care.
www.news.com.au/national/pol...
www.news.com.au
August 15, 2025 at 6:23 AM
This is now two reports in two weeks that ought to spell the end of the ridiculous welfare compliance system.
Hundreds of thousands of people are losing access to vital payments that they need to put food on the table - but Labor doesn’t seem to care.
www.news.com.au/national/pol...
Hundreds of thousands of people are losing access to vital payments that they need to put food on the table - but Labor doesn’t seem to care.
www.news.com.au/national/pol...
Reposted by Ness
Holy crap. Not only are they going to "curate" out the parts they don't like, they want to actually get rid of the material permanently.
Buried in the regime's political takeover letter of the Smithsonian is the worst bit. Unlike exhibits, which are non-destructive towards primary materials, temporary in nature, and reversible, the foundational collections are irreplacable. They want to be able to throw stuff out.
August 13, 2025 at 11:59 AM
Holy crap. Not only are they going to "curate" out the parts they don't like, they want to actually get rid of the material permanently.
Reposted by Ness
To honor #SevereMEDay, each year, #MEAction asks for art submission; this year, over 100 submitted photos, videos, music and other art to #MEAction! A compilation can be found here:
www.youtube.com/watch?v=D-F_...
www.youtube.com/watch?v=D-F_...
Severe ME Artists Project 2025
YouTube video by The ME Action Network
www.youtube.com
August 9, 2025 at 2:13 AM
To honor #SevereMEDay, each year, #MEAction asks for art submission; this year, over 100 submitted photos, videos, music and other art to #MEAction! A compilation can be found here:
www.youtube.com/watch?v=D-F_...
www.youtube.com/watch?v=D-F_...
Reposted by Ness
Acknowledging #SevereME Day with Emerge Australia & World ME Alliance. We urge community to share their video, shining light on the everyday struggle.
August 7, 2025 at 10:00 PM
Acknowledging #SevereME Day with Emerge Australia & World ME Alliance. We urge community to share their video, shining light on the everyday struggle.
Today, 8 August, marks two awareness days:
🐱 International Cat Day, to highlight feline-related issues & promote pet welfare and
💙 Severe ME Awareness Day, in acknowledgement of the estimated 25% of people with myalgic encephalomyelitis ...
#UnitedForME #MECFS #SevereME #MillionsMissing
1/7
🐱 International Cat Day, to highlight feline-related issues & promote pet welfare and
💙 Severe ME Awareness Day, in acknowledgement of the estimated 25% of people with myalgic encephalomyelitis ...
#UnitedForME #MECFS #SevereME #MillionsMissing
1/7
August 8, 2025 at 12:30 PM
Today, 8 August, marks two awareness days:
🐱 International Cat Day, to highlight feline-related issues & promote pet welfare and
💙 Severe ME Awareness Day, in acknowledgement of the estimated 25% of people with myalgic encephalomyelitis ...
#UnitedForME #MECFS #SevereME #MillionsMissing
1/7
🐱 International Cat Day, to highlight feline-related issues & promote pet welfare and
💙 Severe ME Awareness Day, in acknowledgement of the estimated 25% of people with myalgic encephalomyelitis ...
#UnitedForME #MECFS #SevereME #MillionsMissing
1/7
Reposted by Ness
I will be live-posting @emergeaustralia.bsky.social’s #SevereME Day Symposium today at 2pm (AEST). Follow Emerge’s account and join me over there! #mecfs #longCOVID
Image description: Join us for Severe ME Awareness Day Online Symposium. Photos of 4 women smiling
Image description: Join us for Severe ME Awareness Day Online Symposium. Photos of 4 women smiling
Join us for an online symposium on #SevereMEDay2025, 8 Aug, 2pm (AEST). We'll discuss living with & caring for people with #severeME. Recording available post-event to address accessibility issues. Register here: vist.ly/32ndw 🎤💙🎥
August 7, 2025 at 11:23 PM
I will be live-posting @emergeaustralia.bsky.social’s #SevereME Day Symposium today at 2pm (AEST). Follow Emerge’s account and join me over there! #mecfs #longCOVID
Image description: Join us for Severe ME Awareness Day Online Symposium. Photos of 4 women smiling
Image description: Join us for Severe ME Awareness Day Online Symposium. Photos of 4 women smiling
Reposted by Ness
Health(s)care.
A short talk for the 8th of August #severemeday2025 about how healthcare can be a frightening place for those of us living with severe ME.
We urgently need things to change. We need support, and you can help.
Because speaking,
1/
#pwME
www.youtube.com/watch?v=qVDw...
A short talk for the 8th of August #severemeday2025 about how healthcare can be a frightening place for those of us living with severe ME.
We urgently need things to change. We need support, and you can help.
Because speaking,
1/
#pwME
www.youtube.com/watch?v=qVDw...
Health(s)care *** Severe ME Day 2025
YouTube video by Anil about ME
www.youtube.com
August 7, 2025 at 9:06 PM
Health(s)care.
A short talk for the 8th of August #severemeday2025 about how healthcare can be a frightening place for those of us living with severe ME.
We urgently need things to change. We need support, and you can help.
Because speaking,
1/
#pwME
www.youtube.com/watch?v=qVDw...
A short talk for the 8th of August #severemeday2025 about how healthcare can be a frightening place for those of us living with severe ME.
We urgently need things to change. We need support, and you can help.
Because speaking,
1/
#pwME
www.youtube.com/watch?v=qVDw...
Reposted by Ness
Science magazine’s coverage of the DecodeME initial results : www.science.org/content/arti...
Possible genetic clues to ME/chronic fatigue syndrome identified in massive study
DNA analysis of more than 15,500 people with the debilitating condition identifies eight tentative “genetic signals”
www.science.org
August 6, 2025 at 8:59 PM
Science magazine’s coverage of the DecodeME initial results : www.science.org/content/arti...