Mads
@blueforpwme.bsky.social
🇬🇧DxwM.E.1995-EBV&now LC ex-dancer,⛱️lifeguard,performer, working on writing my 1st novel to rep #pwME! I’m a dreamer,nature lover & surfer 🏄♂️🛹1-2 times a yr if I’m lucky. Many undiagnosed comorbidities! Ie.MCAS.OI/DYSAUTONOMIA.EDS. GASTRO.ADHD.CHIARI/SPINAL🦋
Pinned
Mads
@blueforpwme.bsky.social
· May 1
A survey to help me gain insight to help those with energy limiting conditions through gentle flowing movement, relaxation & sensory immersion; from those with lived experience. Apologies for lack of ...
Take this survey powered by surveymonkey.com. Create your own surveys for free.
www.surveymonkey.com
If you experience PEM & are on the mild-mod spectrum of #MyalgicEncephalomyelitis or #LongCovid & are able to get out 1/2 times a month & feel isolated and lonely, then this might be the type of session you could enjoy☁️
Please help me with my research:
Short Q’s🩵🦋
www.surveymonkey.com/r/5GX63NB
Please help me with my research:
Short Q’s🩵🦋
www.surveymonkey.com/r/5GX63NB
Reposted by Mads
Germany pledges €500 million for research through the “National Decade Against Post-Infectious Diseases” (2026-2036), including #MECFS and #LongCOVID.
Addressing what they call “one of the greatest public health challenges of the 21st century.”
www.zeit.de/politik/deut...
Addressing what they call “one of the greatest public health challenges of the 21st century.”
www.zeit.de/politik/deut...
Chronic Fatigue Syndrome: Bundesregierung will Erforschung von ME/CFS stärker fördern
Die Zahl der Long-Covid- und ME/CFS-Erkrankungen hat seit der Pandemie stark zugenommen. Bis 2036 sollen deswegen 500 Millionen Euro in die Forschung investiert werden.
www.zeit.de
November 14, 2025 at 6:50 AM
Germany pledges €500 million for research through the “National Decade Against Post-Infectious Diseases” (2026-2036), including #MECFS and #LongCOVID.
Addressing what they call “one of the greatest public health challenges of the 21st century.”
www.zeit.de/politik/deut...
Addressing what they call “one of the greatest public health challenges of the 21st century.”
www.zeit.de/politik/deut...
Reposted by Mads
An employer who doesn't know the absolute basics of how disability is defined in employment and discrimination law. Massive surprise... 🙄
November 6, 2025 at 6:07 PM
An employer who doesn't know the absolute basics of how disability is defined in employment and discrimination law. Massive surprise... 🙄
Reposted by Mads
At the #ICanCME2025 conference today!
Sabrina Poirier & Maeghan Taverner's intros blew me away.
~Acknowledging labor from people with lived experience
~Setting out expectations
~Moment of silence for those we've lost
This is what a conference designed by people with lived experience looks like 🧪
Sabrina Poirier & Maeghan Taverner's intros blew me away.
~Acknowledging labor from people with lived experience
~Setting out expectations
~Moment of silence for those we've lost
This is what a conference designed by people with lived experience looks like 🧪
November 4, 2025 at 6:23 PM
At the #ICanCME2025 conference today!
Sabrina Poirier & Maeghan Taverner's intros blew me away.
~Acknowledging labor from people with lived experience
~Setting out expectations
~Moment of silence for those we've lost
This is what a conference designed by people with lived experience looks like 🧪
Sabrina Poirier & Maeghan Taverner's intros blew me away.
~Acknowledging labor from people with lived experience
~Setting out expectations
~Moment of silence for those we've lost
This is what a conference designed by people with lived experience looks like 🧪
Sounds like they’re still focusing on the same model that hasn’t worked for many years for so many!
Isn’t it unintelligence that does the same thing thinking it will produce a different outcome?
Oh dear
Perhaps get a disabled person to report on what being disabled is, unless this person is?!?
Isn’t it unintelligence that does the same thing thinking it will produce a different outcome?
Oh dear
Perhaps get a disabled person to report on what being disabled is, unless this person is?!?
November 7, 2025 at 9:00 AM
Sounds like they’re still focusing on the same model that hasn’t worked for many years for so many!
Isn’t it unintelligence that does the same thing thinking it will produce a different outcome?
Oh dear
Perhaps get a disabled person to report on what being disabled is, unless this person is?!?
Isn’t it unintelligence that does the same thing thinking it will produce a different outcome?
Oh dear
Perhaps get a disabled person to report on what being disabled is, unless this person is?!?
Many thanks for sharing @medidier.bsky.social … and thank you for this thread @spichaksimon.bsky.social
💙 #MyalgicEncephalomyelitis
💙 #MyalgicEncephalomyelitis
Million thanks.
Ultradetailed reporting.
⤵️🙏
Ultradetailed reporting.
⤵️🙏
Thread for Day 3 of the @icancmeresearch.bsky.social conference. My attempt at simultaneously sharing on X and Bsky.
November 7, 2025 at 8:48 AM
Many thanks for sharing @medidier.bsky.social … and thank you for this thread @spichaksimon.bsky.social
💙 #MyalgicEncephalomyelitis
💙 #MyalgicEncephalomyelitis
Reposted by Mads
The review is open to everyone. Provide your evidence here. Strongly recommend every family persecuted by social workers too lazy to read NICE G206 make their voices heard. www.gov.uk/government/c...
November 6, 2025 at 8:57 AM
The review is open to everyone. Provide your evidence here. Strongly recommend every family persecuted by social workers too lazy to read NICE G206 make their voices heard. www.gov.uk/government/c...
I’m finally meeting National Trust via a teams call on Monday to discuss my Cloud.Shrine proposal
The 1st step will be to garner interest & ability of #pwME / #LongCovid & any other energy limiting disease to attend. It’s focused towards those with PEM primarily. It will be a #HEPA filtered space ☁️
The 1st step will be to garner interest & ability of #pwME / #LongCovid & any other energy limiting disease to attend. It’s focused towards those with PEM primarily. It will be a #HEPA filtered space ☁️
November 1, 2025 at 6:13 PM
I’m finally meeting National Trust via a teams call on Monday to discuss my Cloud.Shrine proposal
The 1st step will be to garner interest & ability of #pwME / #LongCovid & any other energy limiting disease to attend. It’s focused towards those with PEM primarily. It will be a #HEPA filtered space ☁️
The 1st step will be to garner interest & ability of #pwME / #LongCovid & any other energy limiting disease to attend. It’s focused towards those with PEM primarily. It will be a #HEPA filtered space ☁️
Reposted by Mads
Emerge Australia Research Digest | Issue 122
emerge.org.au/researchdige...
I find the audio summaries useful
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
emerge.org.au/researchdige...
I find the audio summaries useful
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
November 1, 2025 at 5:34 PM
Emerge Australia Research Digest | Issue 122
emerge.org.au/researchdige...
I find the audio summaries useful
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
emerge.org.au/researchdige...
I find the audio summaries useful
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
Reposted by Mads
Today, thirty-six years ago. The Guardian, UK. 24th October 1989. #myalgicencephalomyelitis #cfsme #myalgice #mecfs
October 23, 2025 at 11:04 PM
Today, thirty-six years ago. The Guardian, UK. 24th October 1989. #myalgicencephalomyelitis #cfsme #myalgice #mecfs
Reposted by Mads
For the first time, Berkeley's Trial By Error crowdfunding campaign has reached 50% of the goal right at the 15-day half-way point. Most times, it's at about a third at this point. If you'd like to donate, here's the link:
crowdfund.berkeley.edu/project/47768
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 23, 2025 at 10:45 AM
For the first time, Berkeley's Trial By Error crowdfunding campaign has reached 50% of the goal right at the 15-day half-way point. Most times, it's at about a third at this point. If you'd like to donate, here's the link:
crowdfund.berkeley.edu/project/47768
crowdfund.berkeley.edu/project/47768
Reposted by Mads
When you wake up every morning nervous, with a feeling of dread.
Not because you have an important meeting coming up, or work pressure...
But because you don't know whether or not your body is going to work, or if it's going to be a day of agony and uncontrollable symptoms.
Not because you have an important meeting coming up, or work pressure...
But because you don't know whether or not your body is going to work, or if it's going to be a day of agony and uncontrollable symptoms.
October 23, 2025 at 7:14 AM
When you wake up every morning nervous, with a feeling of dread.
Not because you have an important meeting coming up, or work pressure...
But because you don't know whether or not your body is going to work, or if it's going to be a day of agony and uncontrollable symptoms.
Not because you have an important meeting coming up, or work pressure...
But because you don't know whether or not your body is going to work, or if it's going to be a day of agony and uncontrollable symptoms.
Reposted by Mads
Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a baroness — I’ve put together a short thread about her involvement in #MECFS.
twitter-thread.com/t/1981309222...
twitter-thread.com/t/1981309222...
🧵Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a Baroness. She is married to psychiatrist Sir Simon Wessely, the main architect of the now-discredited psycholog...
🧵Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a Baroness. She is married to psychiatrist Sir Simon Wessely, the main architect of the now-discredited psycholog...
twitter-thread.com
October 23, 2025 at 10:43 AM
Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a baroness — I’ve put together a short thread about her involvement in #MECFS.
twitter-thread.com/t/1981309222...
twitter-thread.com/t/1981309222...
Reposted by Mads
@simonmcg.bsky.social @cgatist.bsky.social please share to your networks
it could be given doi
O'Dwyer and I were promised funding from NIHR by Lyn Romeo in 2022, but O’Dwyer was overloaded with getting promoted to a new post in Birmingham and finally pulled out at the last minute in March this year.
I am now actively looking for another academic to lead on this.
2/3
O'Dwyer and I were promised funding from NIHR by Lyn Romeo in 2022, but O’Dwyer was overloaded with getting promoted to a new post in Birmingham and finally pulled out at the last minute in March this year.
I am now actively looking for another academic to lead on this.
2/3
October 19, 2025 at 8:39 AM
@simonmcg.bsky.social @cgatist.bsky.social please share to your networks
Reposted by Mads
"Left to rot". Exactly. Now people are getting it.
Sept. 2022, Politico: "‘Left to rot’: The lonely plight of long Covid sufferers"
“There are so many things that we need to learn, and no one is helping us,” Eleni Iasonidou, a pediatrician who leads Long Covid Greece, said
www.politico.com/news/2022/08...
“There are so many things that we need to learn, and no one is helping us,” Eleni Iasonidou, a pediatrician who leads Long Covid Greece, said
www.politico.com/news/2022/08...
‘Left to rot’: The lonely plight of long Covid sufferers
Some studies suggest long Covid could affect as much as 30 percent of people who are infected.
www.politico.com
October 17, 2025 at 7:27 PM
"Left to rot". Exactly. Now people are getting it.
Reposted by Mads
"Understanding concussion in #myalgicencephalomyelitis / #chronicfatiguesyndrome: Findings from 2023 National Health Interview study"
www.tandfonline.com/doi/full/10....
Individuals with #MECFS had 4.89 times greater odds of reporting concussion &...2.86 times greater odds of having fallen
www.tandfonline.com/doi/full/10....
Individuals with #MECFS had 4.89 times greater odds of reporting concussion &...2.86 times greater odds of having fallen
October 17, 2025 at 12:31 PM
"Understanding concussion in #myalgicencephalomyelitis / #chronicfatiguesyndrome: Findings from 2023 National Health Interview study"
www.tandfonline.com/doi/full/10....
Individuals with #MECFS had 4.89 times greater odds of reporting concussion &...2.86 times greater odds of having fallen
www.tandfonline.com/doi/full/10....
Individuals with #MECFS had 4.89 times greater odds of reporting concussion &...2.86 times greater odds of having fallen
Reposted by Mads
There are a huge number of people who leave the beach as soon as the sun sets. They are missing some brilliant shows.
#sunset #maui #red #nature #zen #scape #landscape #eastcoastkin #cool #love #sky #beach #photography #bluesky #nokings
#sunset #maui #red #nature #zen #scape #landscape #eastcoastkin #cool #love #sky #beach #photography #bluesky #nokings
October 16, 2025 at 7:11 PM
There are a huge number of people who leave the beach as soon as the sun sets. They are missing some brilliant shows.
#sunset #maui #red #nature #zen #scape #landscape #eastcoastkin #cool #love #sky #beach #photography #bluesky #nokings
#sunset #maui #red #nature #zen #scape #landscape #eastcoastkin #cool #love #sky #beach #photography #bluesky #nokings
13 DAYS TO GO!
Let’s see if the target can be reached (£15,000)
Currently at £11,500 & climbing thanks to our amazing community donating what they can 💙 🫂🙏🏼🙌🏽✨
Let’s see if the target can be reached (£15,000)
Currently at £11,500 & climbing thanks to our amazing community donating what they can 💙 🫂🙏🏼🙌🏽✨
#pwME
#MyalgicEncephalomyelitis
Many of us are still
Alive amazingly after 30/40/50+ years of this hell
And yet we still have the fight and human spirit to believe in a better life.
Many unsurprisingly are choosing an early death due to the unbearable hell that is this horrendous disease.
#MyalgicEncephalomyelitis
Many of us are still
Alive amazingly after 30/40/50+ years of this hell
And yet we still have the fight and human spirit to believe in a better life.
Many unsurprisingly are choosing an early death due to the unbearable hell that is this horrendous disease.
Delighted to see this at iver £10,000 now!
We are a brilliant and united community and I am so proud of us all.
We deserve SO MUCH BETTER
#Justice4ME
www.crowdjustice.com/case/justice...
We are a brilliant and united community and I am so proud of us all.
We deserve SO MUCH BETTER
#Justice4ME
www.crowdjustice.com/case/justice...
October 15, 2025 at 11:36 AM
13 DAYS TO GO!
Let’s see if the target can be reached (£15,000)
Currently at £11,500 & climbing thanks to our amazing community donating what they can 💙 🫂🙏🏼🙌🏽✨
Let’s see if the target can be reached (£15,000)
Currently at £11,500 & climbing thanks to our amazing community donating what they can 💙 🫂🙏🏼🙌🏽✨
Reposted by Mads
With thanks to @georgemonbiot.bsky.social for his unwavering support for our community & this horrendous disease where we are failed by so many 💙
#MyalgicEncephalomyelitis
#MyalgicEncephalomyelitis
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome
Research could offer hope for ME patients – but some experts urge caution and say more studies needed
www.theguardian.com
October 9, 2025 at 12:35 PM
With thanks to @georgemonbiot.bsky.social for his unwavering support for our community & this horrendous disease where we are failed by so many 💙
#MyalgicEncephalomyelitis
#MyalgicEncephalomyelitis
Reposted by Mads
Just as we are beginning to understand the biochemical basis of this horrendous condition, the government appoints the man perhaps most responsible for the mischaracterisation of ME/CFS – Simon Wesseley - to its *overdiagnosis* commission. www.benefitsandwork.co.uk/news/controv...
Controversial professor to investigate overdiagnosis of mental health and neurodivergence for Labour
Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments...
www.benefitsandwork.co.uk
October 8, 2025 at 6:09 AM
Just as we are beginning to understand the biochemical basis of this horrendous condition, the government appoints the man perhaps most responsible for the mischaracterisation of ME/CFS – Simon Wesseley - to its *overdiagnosis* commission. www.benefitsandwork.co.uk/news/controv...
Reposted by Mads
On the one hand, medical science is beginning to get a handle on the very complex physiological basis of this disease. On the other hand, we can expect the greatest medical scandal (so far) of the 21st Century – the mass mistreatment and neglect of ME/CFS sufferers – to continue.
October 8, 2025 at 6:13 AM
On the one hand, medical science is beginning to get a handle on the very complex physiological basis of this disease. On the other hand, we can expect the greatest medical scandal (so far) of the 21st Century – the mass mistreatment and neglect of ME/CFS sufferers – to continue.
Reposted by Mads
The mystery of medical diagnosis!
October 3, 2025 at 6:25 PM
The mystery of medical diagnosis!
Reposted by Mads
Tomorrow, Tue 7 Oct, the Welsh Senedd Business Committee will consider allocating 15 Oct to a Severe/Very Severe ME debate.
It has a good chance of being selected.
#pwME in Wales please help, email your MS and ask them to back MS Adam Price’s Motion.
Find your
1/2
record.senedd.wales/Motion/8884
It has a good chance of being selected.
#pwME in Wales please help, email your MS and ask them to back MS Adam Price’s Motion.
Find your
1/2
record.senedd.wales/Motion/8884
Motion - NNDM8884 - Welsh Parliament
The Welsh Parliament is the democratically elected body that represents the interests of Wales and its people.
record.senedd.wales
October 6, 2025 at 10:33 AM
Tomorrow, Tue 7 Oct, the Welsh Senedd Business Committee will consider allocating 15 Oct to a Severe/Very Severe ME debate.
It has a good chance of being selected.
#pwME in Wales please help, email your MS and ask them to back MS Adam Price’s Motion.
Find your
1/2
record.senedd.wales/Motion/8884
It has a good chance of being selected.
#pwME in Wales please help, email your MS and ask them to back MS Adam Price’s Motion.
Find your
1/2
record.senedd.wales/Motion/8884
Reposted by Mads
Thanks to great work by @severemecymru.bsky.social and vital support from Adam Price and others Member Debate on severe #MEcfs has been selected for debate by Senedd on 15 October 2025.
record.assembly.wales/Motion/8884
record.assembly.wales/Motion/8884
Motion - NNDM8884 - Welsh Parliament
The Welsh Parliament is the democratically elected body that represents the interests of Wales and its people.
record.assembly.wales
October 7, 2025 at 12:27 PM
Thanks to great work by @severemecymru.bsky.social and vital support from Adam Price and others Member Debate on severe #MEcfs has been selected for debate by Senedd on 15 October 2025.
record.assembly.wales/Motion/8884
record.assembly.wales/Motion/8884
October 3, 2025 at 8:19 AM