@traceydooley.bsky.social
Living an increasingly small life enforced via chronic illness yet striving to embrace snippets of delightfulness wherever and whenever I can
#MillionsMission
#MillionsMission
Pinned
Done. Please do take a few moments to help #pwME.
🚨 NEXT WEDNESDAY 19 NOVEMBER
We’ve been made aware of an upcoming Westminster Hall debate, tabled by @tessamunt.bsky.social, focused on government support for people with ME.
If you have the energy - an email to your MP asking them to attend can go a long way 🙏
Template in next post👇
We’ve been made aware of an upcoming Westminster Hall debate, tabled by @tessamunt.bsky.social, focused on government support for people with ME.
If you have the energy - an email to your MP asking them to attend can go a long way 🙏
Template in next post👇
November 13, 2025 at 7:20 PM
Done. Please do take a few moments to help #pwME.
Reposted
This is happening everyday, everywhere.
Read the story of Rosie and Alice.
Everyone who has been hospitalised with ME, knows it.
"Hospitals should be places of healing – but for people with severe ME, they are often sources of harm".
#GreatestMEdicalScandal
www.thereforme.uk/p/sensory-he...
Read the story of Rosie and Alice.
Everyone who has been hospitalised with ME, knows it.
"Hospitals should be places of healing – but for people with severe ME, they are often sources of harm".
#GreatestMEdicalScandal
www.thereforme.uk/p/sensory-he...
Sensory hell and medical harm
My sister’s experience of very severe ME in the NHS
www.thereforme.uk
October 21, 2025 at 8:57 AM
This is happening everyday, everywhere.
Read the story of Rosie and Alice.
Everyone who has been hospitalised with ME, knows it.
"Hospitals should be places of healing – but for people with severe ME, they are often sources of harm".
#GreatestMEdicalScandal
www.thereforme.uk/p/sensory-he...
Read the story of Rosie and Alice.
Everyone who has been hospitalised with ME, knows it.
"Hospitals should be places of healing – but for people with severe ME, they are often sources of harm".
#GreatestMEdicalScandal
www.thereforme.uk/p/sensory-he...
Please consider signing — Trump has threatened to sue the BBC (and therefore the British public, as we are licence-payers of this public service) for $1bn — huge irony considering what that man has done himself www.libdems.org.uk/bbc
Trump-proof the BBC
The BBC is our national broadcaster, we must defend it against those who want to destroy it.
www.libdems.org.uk
November 10, 2025 at 7:50 PM
Please consider signing — Trump has threatened to sue the BBC (and therefore the British public, as we are licence-payers of this public service) for $1bn — huge irony considering what that man has done himself www.libdems.org.uk/bbc
Great to hear @matthewstadlen.bsky.social standing up against tyrants such as the Big Fat Orange one, but also Angela Epstein, who went on a nonsensical rant re the BBC (and failed to see the irony of Trump having 1,000s upon 1000s of times spurred out falsehoods, let alone undermining democracy).
November 10, 2025 at 7:47 PM
Great to hear @matthewstadlen.bsky.social standing up against tyrants such as the Big Fat Orange one, but also Angela Epstein, who went on a nonsensical rant re the BBC (and failed to see the irony of Trump having 1,000s upon 1000s of times spurred out falsehoods, let alone undermining democracy).
#ME Installation in front of the Ministry of Research, Berlin.
Body bags depicting the unseen, imprisoned lives in the tiniest, darkest spaces in which ME patients live their half lives.
Also a memorial for those that have died from this appallingly neglected illness.
Body bags depicting the unseen, imprisoned lives in the tiniest, darkest spaces in which ME patients live their half lives.
Also a memorial for those that have died from this appallingly neglected illness.
November 7, 2025 at 12:21 AM
November 7, 2025 at 12:15 AM
Reposted
The problem with using the broader “CFS” definitions… is that the study samples “will include cases with many other causes of fatigue, including other organic disease or depression or mental health illnesses. This is not good for research,” said Luis Nacul, MD, PhD.
November 6, 2025 at 7:42 PM
The problem with using the broader “CFS” definitions… is that the study samples “will include cases with many other causes of fatigue, including other organic disease or depression or mental health illnesses. This is not good for research,” said Luis Nacul, MD, PhD.
Privatisation = "the drain of resources away from NHS providers" + "profit margins that keep the private sector seeking more NHS-funded work mean that every £1 spent in the private sector delivers LESS value in the form of patient care than the same amount spent in-house NHS services" rb.gy/th6gdq
ICB WATCH: New figures show uneven trends on use of private sector? - The Lowdown
New figures published earlier this month show the extent to which some Integrated Care Boards (ICBs) have increased their use of the private sector since Labour took office last July, and the extent t...
lowdownnhs.info
October 8, 2025 at 6:34 PM
Privatisation = "the drain of resources away from NHS providers" + "profit margins that keep the private sector seeking more NHS-funded work mean that every £1 spent in the private sector delivers LESS value in the form of patient care than the same amount spent in-house NHS services" rb.gy/th6gdq
TWO years on, very severe M.E. patient Karen Gordon STILL fears for her life due to #NHSfailings — & still needs our help.
Anyone who hasn’t yet, please SHARE & consider signing her petition🙏
rb.gy/12xvic
An update of which is here:
chng.it/CGMQTDVvRb
#SevereME #MyalgicEncephalomyelitis #MECFS
Anyone who hasn’t yet, please SHARE & consider signing her petition🙏
rb.gy/12xvic
An update of which is here:
chng.it/CGMQTDVvRb
#SevereME #MyalgicEncephalomyelitis #MECFS
We Can Make an Impact.
Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings.
chng.it
October 5, 2025 at 4:59 PM
TWO years on, very severe M.E. patient Karen Gordon STILL fears for her life due to #NHSfailings — & still needs our help.
Anyone who hasn’t yet, please SHARE & consider signing her petition🙏
rb.gy/12xvic
An update of which is here:
chng.it/CGMQTDVvRb
#SevereME #MyalgicEncephalomyelitis #MECFS
Anyone who hasn’t yet, please SHARE & consider signing her petition🙏
rb.gy/12xvic
An update of which is here:
chng.it/CGMQTDVvRb
#SevereME #MyalgicEncephalomyelitis #MECFS
Reposted
September 25, 2025 at 6:53 PM
Reposted
The richest man on earth owns X.
The second richest man on earth is about to be a major owner of TikTok.
The third richest man owns Facebook, Instagram, and WhatsApp.
The fourth richest man owns The Washington Post.
See the problem here?
The second richest man on earth is about to be a major owner of TikTok.
The third richest man owns Facebook, Instagram, and WhatsApp.
The fourth richest man owns The Washington Post.
See the problem here?
September 24, 2025 at 8:00 PM
The richest man on earth owns X.
The second richest man on earth is about to be a major owner of TikTok.
The third richest man owns Facebook, Instagram, and WhatsApp.
The fourth richest man owns The Washington Post.
See the problem here?
The second richest man on earth is about to be a major owner of TikTok.
The third richest man owns Facebook, Instagram, and WhatsApp.
The fourth richest man owns The Washington Post.
See the problem here?
Agreed. And here's an excellent summary of the (significant) difference between Pope Leo and Elon Musk — the former calling for compassion and inclusion, the latter spreading hatred and division, courtesy of The Times comments section at tinyurl.com/yyyyfvmw
September 16, 2025 at 12:36 AM
Agreed. And here's an excellent summary of the (significant) difference between Pope Leo and Elon Musk — the former calling for compassion and inclusion, the latter spreading hatred and division, courtesy of The Times comments section at tinyurl.com/yyyyfvmw
Reposted
Ayrshire Post and Troon Herald, Scotland, 12th September 1986. Thirty-nine years ago today.
"Exercise should never be undertaken where M.E. is suspected as this worsens all symptoms". #myalgicencephalomyelitis
"Exercise should never be undertaken where M.E. is suspected as this worsens all symptoms". #myalgicencephalomyelitis
September 12, 2025 at 7:25 PM
Ayrshire Post and Troon Herald, Scotland, 12th September 1986. Thirty-nine years ago today.
"Exercise should never be undertaken where M.E. is suspected as this worsens all symptoms". #myalgicencephalomyelitis
"Exercise should never be undertaken where M.E. is suspected as this worsens all symptoms". #myalgicencephalomyelitis
@steverichards.bsky.social
Thank you for saying, quite rightly, that you're more interested in the decaying #NHS — 'Four in five NHS hospital trusts are failing' — than the not-so-princely Harry on @news.sky.com Press Preview this morning.
Thank you for saying, quite rightly, that you're more interested in the decaying #NHS — 'Four in five NHS hospital trusts are failing' — than the not-so-princely Harry on @news.sky.com Press Preview this morning.
September 9, 2025 at 5:11 PM
@steverichards.bsky.social
Thank you for saying, quite rightly, that you're more interested in the decaying #NHS — 'Four in five NHS hospital trusts are failing' — than the not-so-princely Harry on @news.sky.com Press Preview this morning.
Thank you for saying, quite rightly, that you're more interested in the decaying #NHS — 'Four in five NHS hospital trusts are failing' — than the not-so-princely Harry on @news.sky.com Press Preview this morning.
This couldn't be more pertinent to what's happening in Trump's USA right now...
August 26, 2025 at 6:28 PM
This couldn't be more pertinent to what's happening in Trump's USA right now...
Yes, contrary to what *some* people say (Farage, I'm looking at you, for one), the ECHR is actually good for us Brits. Why change that. (That's a rhetorical Q, obviously.)
#ECHR
#ECHR
August 26, 2025 at 2:04 PM
Yes, contrary to what *some* people say (Farage, I'm looking at you, for one), the ECHR is actually good for us Brits. Why change that. (That's a rhetorical Q, obviously.)
#ECHR
#ECHR
Some findings of the DecodeME DNA Study:
Genes found in:
• immune (fighting infections) -nervous system (chronic pain)
• NONE are related to depression or anxiety.
"This brings ME/CFS in line with other long-term diseases which have genetic components."
#MyalgicEncephalomyelitis #MEcfs
Genes found in:
• immune (fighting infections) -nervous system (chronic pain)
• NONE are related to depression or anxiety.
"This brings ME/CFS in line with other long-term diseases which have genetic components."
#MyalgicEncephalomyelitis #MEcfs
Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population.
-
Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s
-
Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s
August 7, 2025 at 12:25 AM
Some findings of the DecodeME DNA Study:
Genes found in:
• immune (fighting infections) -nervous system (chronic pain)
• NONE are related to depression or anxiety.
"This brings ME/CFS in line with other long-term diseases which have genetic components."
#MyalgicEncephalomyelitis #MEcfs
Genes found in:
• immune (fighting infections) -nervous system (chronic pain)
• NONE are related to depression or anxiety.
"This brings ME/CFS in line with other long-term diseases which have genetic components."
#MyalgicEncephalomyelitis #MEcfs
Reposted
August 2, 2025 at 8:58 PM
Reposted
Going to have to Update The
Stephen King Book Collection.....
Stephen King Book Collection.....
August 2, 2025 at 7:32 AM
Going to have to Update The
Stephen King Book Collection.....
Stephen King Book Collection.....
Yet another life lost to #MyalgicEncephalomyelitis. A totally avoidable loss but for the complete lack of specialist care, research funding, training, and guidelines on treating this cruel and hideous disease.
#pwME #MEcfs
#pwME #MEcfs
Triggerwarnung: Tod, Sterbehilfe
„Am Dienstag, den 15. Juli um 10:30 Uhr wird unsere liebe und besondere Leidensgenossin Denise Burgy durch Sterbehilfe aus dem Leben scheiden.
Das Leben mit der schweren, behindernden ME-Erkrankung wurde vor einiger Zeit unerträglich, und Denise …
„Am Dienstag, den 15. Juli um 10:30 Uhr wird unsere liebe und besondere Leidensgenossin Denise Burgy durch Sterbehilfe aus dem Leben scheiden.
Das Leben mit der schweren, behindernden ME-Erkrankung wurde vor einiger Zeit unerträglich, und Denise …
August 2, 2025 at 6:28 PM
Yet another life lost to #MyalgicEncephalomyelitis. A totally avoidable loss but for the complete lack of specialist care, research funding, training, and guidelines on treating this cruel and hideous disease.
#pwME #MEcfs
#pwME #MEcfs
Reposted
Gastrointestinal symptoms are very common among people with #ME and can lead to malnutrition. Yet there is very little research in this area.
#HealthResearch #MedSky
nutritionandmetabolism.biomedcentral.com/articles/10....
#HealthResearch #MedSky
nutritionandmetabolism.biomedcentral.com/articles/10....
Gut inflammation in chronic fatigue syndrome - Nutrition & Metabolism
Chronic fatigue syndrome (CFS) is a debilitating disease characterized by unexplained disabling fatigue and a combination of accompanying symptoms the pathology of which is incompletely understood. Ma...
nutritionandmetabolism.biomedcentral.com
July 19, 2025 at 8:35 AM
Gastrointestinal symptoms are very common among people with #ME and can lead to malnutrition. Yet there is very little research in this area.
#HealthResearch #MedSky
nutritionandmetabolism.biomedcentral.com/articles/10....
#HealthResearch #MedSky
nutritionandmetabolism.biomedcentral.com/articles/10....
Reposted
Helen Baxter from the 25% Severe ME Group wants to talk to people in the UK of all severities who are taking off label drugs for ME (i.e. those unlicensed for ME), whether they are being prescribed on the NHS or purchased privately. [email protected]
July 10, 2025 at 9:37 AM
Helen Baxter from the 25% Severe ME Group wants to talk to people in the UK of all severities who are taking off label drugs for ME (i.e. those unlicensed for ME), whether they are being prescribed on the NHS or purchased privately. [email protected]
Yet another life lost to #MyalgicEncephalomyelitis. A totally avoidable death but for the complete lack of specialist care, research funding, training, and guidelines on treating the hideous disease that is #MEcfs.
#pwME
#pwME
Bridget O'Shea
February 1, 1978 – July 16, 2025
@Bridget_OShea 🐦✖️🐦
Jul 13 2025
I called my mom. I told her I'm afraid I'm going to die.
Her response?
She hung up. 😫 #MEcfs
www.dignitymemorial.com/obituaries/c...
February 1, 1978 – July 16, 2025
@Bridget_OShea 🐦✖️🐦
Jul 13 2025
I called my mom. I told her I'm afraid I'm going to die.
Her response?
She hung up. 😫 #MEcfs
www.dignitymemorial.com/obituaries/c...
July 21, 2025 at 12:35 AM
Yet another life lost to #MyalgicEncephalomyelitis. A totally avoidable death but for the complete lack of specialist care, research funding, training, and guidelines on treating the hideous disease that is #MEcfs.
#pwME
#pwME
A tragic loss of life. Avoidable deaths complete lack of specialist care, research funding, training, and guidelines on treating the hideous disease that is #MEcfs.
#MyalgicEncephalomyelitis #pwME
#MyalgicEncephalomyelitis #pwME
💙💙
Two hearts for the two people who I’ve heard about today that have died from ME.
So many don’t realise that ME can be fatal.
RIP
#ME/CFS #SevereME #DontLetMEdie
Two hearts for the two people who I’ve heard about today that have died from ME.
So many don’t realise that ME can be fatal.
RIP
#ME/CFS #SevereME #DontLetMEdie
In memory of Judith Schossböck. Judith was a scientist, artist, activist and active member of the Burning Man community. She died in December 2024 with #ME/CFS and a combination of insidious chronic diseases.
youtube.com/watch?v=3FBW...
@judyintheskynet.bsky.social #pwME 💙🕯️💙
youtube.com/watch?v=3FBW...
@judyintheskynet.bsky.social #pwME 💙🕯️💙
July 21, 2025 at 12:22 AM
A tragic loss of life. Avoidable deaths complete lack of specialist care, research funding, training, and guidelines on treating the hideous disease that is #MEcfs.
#MyalgicEncephalomyelitis #pwME
#MyalgicEncephalomyelitis #pwME