Julie Houston
@julesahouston.bsky.social
Body malfunctioning since 1998 #MECFS #PoTS #MCAS #hypermobility & other delights.
I'm a #LongCovid #LongCovidKids and #Pans #Pandas ally. Here to make connections old & new.
#CovidIsNotOver #CleanAirForAll #MasksInHealthcare #GreatestMEdicalScandal
I'm a #LongCovid #LongCovidKids and #Pans #Pandas ally. Here to make connections old & new.
#CovidIsNotOver #CleanAirForAll #MasksInHealthcare #GreatestMEdicalScandal
Pinned
Julie Houston
@julesahouston.bsky.social
· Aug 20
M.E. is a story of abandonment, abuse, coverups, neglect, injustice, gaslighting & scandal. The trail of nefarious behaviour leads to the very top of our institutions. It's now being repeated with #LongCovid patients. #ExposeMENow #GreatestMEdicalScandal #ThereforME #pwLC #pwME
Reposted by Julie Houston
The initial DNA results from DecodeME are coming this week! We will release them on our website on Wednesday 6th August at 7pm (approx).
We're letting you know the timing in advance so you can pace beforehand.
Thank you to our participants & supporters.
We're letting you know the timing in advance so you can pace beforehand.
Thank you to our participants & supporters.
August 4, 2025 at 5:23 PM
The initial DNA results from DecodeME are coming this week! We will release them on our website on Wednesday 6th August at 7pm (approx).
We're letting you know the timing in advance so you can pace beforehand.
Thank you to our participants & supporters.
We're letting you know the timing in advance so you can pace beforehand.
Thank you to our participants & supporters.
Big news #pwME! Prepare yourselves! The initial DNA results from the @DecodeMEstudy will be available in the next few days. Emails will be sent out around 7pm on Wednesday 6th August & results will be published on their website at the same time. Fingers crossed for some momentous results! 🤞🙏
August 4, 2025 at 5:05 PM
Big news #pwME! Prepare yourselves! The initial DNA results from the @DecodeMEstudy will be available in the next few days. Emails will be sent out around 7pm on Wednesday 6th August & results will be published on their website at the same time. Fingers crossed for some momentous results! 🤞🙏
Reposted by Julie Houston
This is Isla at age 8.
She died at age 18 with severe ME/CFS.
Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.
She died at age 18 with severe ME/CFS.
Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.
![More, more, more
You are meant to understand my illness but you all do is push, push, push. Nothing I do is ever good enough. I am proud and think you will be pleased with me as I have been going to school much more than before, but all you do is say I need to stay there longer, and if I feel ill I can’t [go] home early. I can’t get to sleep at night and you make me feel like it is my fault. You tell my parents to ignore me at night time, even when I am upset and feeling scared and lonely. Lucky for me they ignore you! I am so tired but you say I still have to get out of bed and walk even at the weekend after I have been at school all week. I don’t like coming to see you, it makes me worry what you are going to ask me to do next. My mum tells you I sometimes feel much worse but you tell us I just have to do more, more, more. You speak to my school and I worry they will be on your side and expect more of me too. I worry about what you are going to tell us to do next. I think you should care more about the children who come to see you and try to understand what they are going through.
From Isla aged 8](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:tbjkzimgulox2kwiykbhspfn/bafkreicns5bi5awyizdmale5oex7evjygihsoc7lzaop536t4fh4tunxna@jpeg)
July 31, 2025 at 12:40 PM
This is Isla at age 8.
She died at age 18 with severe ME/CFS.
Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.
She died at age 18 with severe ME/CFS.
Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.
I have deleted my previous post at the request of @swastrosarah.bsky.social as the family thankfully now have legal assistance. #PwME #MEKills
July 31, 2025 at 11:27 AM
I have deleted my previous post at the request of @swastrosarah.bsky.social as the family thankfully now have legal assistance. #PwME #MEKills
Reposted by Julie Houston
@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
#MEKills #HumanRights
July 31, 2025 at 7:11 AM
@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.
Reposted by Julie Houston
Award-winning author and journalist, @georgemonbiot.bsky.social was today joined by 8 fellow Lift The Ban sign-holders and around 200 members of the public in support of the de-proscription of direct action group Palestine Action.
Join us on August 9th:
wedonotcomply.org
Join us on August 9th:
wedonotcomply.org
July 26, 2025 at 2:38 PM
Award-winning author and journalist, @georgemonbiot.bsky.social was today joined by 8 fellow Lift The Ban sign-holders and around 200 members of the public in support of the de-proscription of direct action group Palestine Action.
Join us on August 9th:
wedonotcomply.org
Join us on August 9th:
wedonotcomply.org
Reposted by Julie Houston
We believe clean air should be accessible to all, and we’re so excited to support Air Library Scotland’s initiative to rent out air purifiers for free across Edinburgh.
If you’re in Edinburgh, you can try one out and breathe cleaner air for yourself.
Check it out!
@airlibraryscotland.bsky.social
If you’re in Edinburgh, you can try one out and breathe cleaner air for yourself.
Check it out!
@airlibraryscotland.bsky.social
July 2, 2025 at 4:20 PM
We believe clean air should be accessible to all, and we’re so excited to support Air Library Scotland’s initiative to rent out air purifiers for free across Edinburgh.
If you’re in Edinburgh, you can try one out and breathe cleaner air for yourself.
Check it out!
@airlibraryscotland.bsky.social
If you’re in Edinburgh, you can try one out and breathe cleaner air for yourself.
Check it out!
@airlibraryscotland.bsky.social
Reposted by Julie Houston
We're excited to announce we're now ready to take booking requests for air purifiers in and around Edinburgh! Anyone can borrow & loans are free.
Many thanks to @smartairuk.bsky.social for donating a SA600 and a Blast Mini, enabling this initiative!
Request form: cryptpad.fr/form/#/2/for...
Many thanks to @smartairuk.bsky.social for donating a SA600 and a Blast Mini, enabling this initiative!
Request form: cryptpad.fr/form/#/2/for...
July 1, 2025 at 3:06 PM
We're excited to announce we're now ready to take booking requests for air purifiers in and around Edinburgh! Anyone can borrow & loans are free.
Many thanks to @smartairuk.bsky.social for donating a SA600 and a Blast Mini, enabling this initiative!
Request form: cryptpad.fr/form/#/2/for...
Many thanks to @smartairuk.bsky.social for donating a SA600 and a Blast Mini, enabling this initiative!
Request form: cryptpad.fr/form/#/2/for...
"The signatories, including the former supreme court justices Lord Sumption and Lord Wilson, court of appeal judges and more than 70 KCs, say that war crimes, crimes against humanity and serious violations of international humanitarian law are being committed in Palestine."
May 27, 2025 at 12:18 AM
"The signatories, including the former supreme court justices Lord Sumption and Lord Wilson, court of appeal judges and more than 70 KCs, say that war crimes, crimes against humanity and serious violations of international humanitarian law are being committed in Palestine."
Reposted by Julie Houston
@bmj.com's dangerous & inconsistent approach to #ME + long Covid resembles psych propaganda more than balanced reporting (notwithstanding the "Opinion" header), especially in relation to Professor Paul Garner's long covid "journey", as described in my 2021 post valerieeliotsmith.com/2021/02/01/p...
The BMJ has now published my rapid response to Miller et al's Opinion piece.
www.bmj.com/content/389/...
www.bmj.com/content/389/...
May 16, 2025 at 9:37 AM
@bmj.com's dangerous & inconsistent approach to #ME + long Covid resembles psych propaganda more than balanced reporting (notwithstanding the "Opinion" header), especially in relation to Professor Paul Garner's long covid "journey", as described in my 2021 post valerieeliotsmith.com/2021/02/01/p...
Reposted by Julie Houston
I've submitted a rapid response to this BMJ Opinion piece - speaking from my dual experience as both researcher and 'recovered ME/CFS patient' (not a term I'd choose to employ).
![Beliefs about ME/CFS can shape lives
Dear Editor,
Last year, I completed a Wellcome-funded PhD exploring women’s experiences of ‘medically unexplained symptoms’ (MUS), a category into which ME/CFS is typically subsumed. During my PhD, I had the privilege of interviewing women living with illnesses including ME/CFS.
My interest in ME/CFS is both professional and personal. In September 2008, around my fifteenth birthday, I caught a ‘flu-like virus. My health deteriorated sharply and I was diagnosed with ME/CFS in January 2009; my teenage years and early twenties were shaped by different kinds of formative experiences. In February 2016, I caught another ‘flu-like virus. To my intense and enduring surprise, my ME/CFS symptoms disappeared. They have not returned.
While Dr Miller and colleagues argue that ‘[r]eframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS’,[1] my recovery did not involve any of these factors. It simply happened. My health has changed drastically, but my beliefs about the illness and its causes have remained steadfast since 2008.
In 2013, after four years unwell and a return to severe illness, I came to believe that I would not recover. This belief did not harm my mental wellbeing, contra to the claims of Dr Miller and colleagues.[1] What did harm my mental wellbeing - to such a significant extent that I have since needed professional support to move forwards - were the beliefs that others held about me and my illness: that I could get better, if only I reframed my own thoughts, or did more exercise, or exercised in a different way, or stopped focusing on my symptoms. In short, the belief that there was a ‘path’ to recovery (as Dr Miller and colleagues put it),[1] if only I chose to search for it.
The National Institute for Health and Care Excellence (NICE) no longer recommends therapies based on deconditioning and exercise avoidance theories as perpetuating ME/CFS,[2] recognisin…](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:tfndvthrcq3sux7rpoz5beef/bafkreieqlzwmnerovslptiot6af6fxam2xpf4dzxrs64ec5ifxcflesy3u@jpeg)
May 15, 2025 at 4:45 PM
I've submitted a rapid response to this BMJ Opinion piece - speaking from my dual experience as both researcher and 'recovered ME/CFS patient' (not a term I'd choose to employ).
Nothing new to say this #MEAwarenessDay. My brain’s wrecked, my body’s broken, and after 27 years, nothing has changed: no progress, no treatments, no cure. It's #StillTheSaME and the fury burns. Sending love & solidarity to you all. #LeftToRot
May 12, 2025 at 8:34 AM
Nothing new to say this #MEAwarenessDay. My brain’s wrecked, my body’s broken, and after 27 years, nothing has changed: no progress, no treatments, no cure. It's #StillTheSaME and the fury burns. Sending love & solidarity to you all. #LeftToRot
Reposted by Julie Houston
The brilliant PD Avengers are calling for the Parkinson’s community to sign up to their 2025 World #Parkinson’s Day campaign!
⚡ #SparkTheNight will see landmarks across the globe lit up in blue in solidarity for World Parkinson’s Day.
👉 Find out how you can get involved: https://buff.ly/4hwNvaF
⚡ #SparkTheNight will see landmarks across the globe lit up in blue in solidarity for World Parkinson’s Day.
👉 Find out how you can get involved: https://buff.ly/4hwNvaF
February 12, 2025 at 12:38 PM
The brilliant PD Avengers are calling for the Parkinson’s community to sign up to their 2025 World #Parkinson’s Day campaign!
⚡ #SparkTheNight will see landmarks across the globe lit up in blue in solidarity for World Parkinson’s Day.
👉 Find out how you can get involved: https://buff.ly/4hwNvaF
⚡ #SparkTheNight will see landmarks across the globe lit up in blue in solidarity for World Parkinson’s Day.
👉 Find out how you can get involved: https://buff.ly/4hwNvaF
Reposted by Julie Houston
Our next online support meeting for #LongCovid patients (& parents) is next MONDAY 10TH FEBRUARY AT 7PM.
No need to register.
Just click on the zoom link below
Join Zoom Meeting
us06web.zoom.us/j/86731632565?…
#Irelandn#LongCovidKidsds
Meeting ID: 867 3163 2565
Passcode: 931955
No need to register.
Just click on the zoom link below
Join Zoom Meeting
us06web.zoom.us/j/86731632565?…
#Irelandn#LongCovidKidsds
Meeting ID: 867 3163 2565
Passcode: 931955
Join our Cloud HD Video Meeting
Zoom is the leader in modern enterprise video communications, with an easy, reliable cloud platform for video and audio conferencing, chat, and webinars across mobile, desktop, and room systems. Zoom Rooms is the original software-based conference room solution used around the world in board, conference, huddle, and training rooms, as well as executive offices and classrooms. Founded in 2011, Zoom helps businesses and organizations bring their teams together in a frictionless environment to get more done. Zoom is a publicly traded company headquartered in San Jose, CA.
https://us06web.zoom.us/j/86731632565?…
February 7, 2025 at 4:10 AM
Our next online support meeting for #LongCovid patients (& parents) is next MONDAY 10TH FEBRUARY AT 7PM.
No need to register.
Just click on the zoom link below
Join Zoom Meeting
us06web.zoom.us/j/86731632565?…
#Irelandn#LongCovidKidsds
Meeting ID: 867 3163 2565
Passcode: 931955
No need to register.
Just click on the zoom link below
Join Zoom Meeting
us06web.zoom.us/j/86731632565?…
#Irelandn#LongCovidKidsds
Meeting ID: 867 3163 2565
Passcode: 931955
Petition update! "Last week the Severe ME Advocacy Group heard from Line in Denmark that the psychiatrists had dismissed our letter as being from "uncredible sources"." @exceedhergrasp1.bsky.social & others have now made submissions. Please keep signing & sharing.
www.change.org/p/prevent-fo...
www.change.org/p/prevent-fo...
Help Very Severe ME patient Line in Denmark pay for a lawyer to defend her freedom
Last week the Severe ME Advocacy Group heard from Line in Denmark that the psychiatrists had dismissed our letter as being from "uncredible sources".
Line added "They are using it against me, further...
www.change.org
February 2, 2025 at 6:03 PM
Petition update! "Last week the Severe ME Advocacy Group heard from Line in Denmark that the psychiatrists had dismissed our letter as being from "uncredible sources"." @exceedhergrasp1.bsky.social & others have now made submissions. Please keep signing & sharing.
www.change.org/p/prevent-fo...
www.change.org/p/prevent-fo...
Check out The Basics: Orthostatic Intolerance with Clayton Powers, DPT! Learn about OI, its symptoms, and tips for pacing upright activities.
Watch now: bit.ly/3W9TzNG
#OrthostaticIntolerance #BatemanHorneCenter #ChronicIllness #PatientEducation
Watch now: bit.ly/3W9TzNG
#OrthostaticIntolerance #BatemanHorneCenter #ChronicIllness #PatientEducation
January 11, 2025 at 10:41 AM
Reposted by Julie Houston
open.substack.com/pub/immuneil...
Black condemned the physicians, insurers, politicians, and media that were indoctrinated in the “biopsychosocial (BPS) doctrine” of ME/CFS, which portrays patients as delusional..
Calling this doctrine “a fraud” used in “gaslighting”..
"cost effective"..
Black condemned the physicians, insurers, politicians, and media that were indoctrinated in the “biopsychosocial (BPS) doctrine” of ME/CFS, which portrays patients as delusional..
Calling this doctrine “a fraud” used in “gaslighting”..
"cost effective"..
Britain on the Verge of Criminalizing “Malingering” by ME/CFS Patients and Other Desperately Ill People
Scottish lawyer David J. Black attacks the “ruthless war of attrition” on benefits for Britain’s “poor-sick” and its U.S.-based insurance company instigators
open.substack.com
December 7, 2024 at 4:42 PM
open.substack.com/pub/immuneil...
Black condemned the physicians, insurers, politicians, and media that were indoctrinated in the “biopsychosocial (BPS) doctrine” of ME/CFS, which portrays patients as delusional..
Calling this doctrine “a fraud” used in “gaslighting”..
"cost effective"..
Black condemned the physicians, insurers, politicians, and media that were indoctrinated in the “biopsychosocial (BPS) doctrine” of ME/CFS, which portrays patients as delusional..
Calling this doctrine “a fraud” used in “gaslighting”..
"cost effective"..
Reposted by Julie Houston
I can’t even.
@juliadoubleday.bsky.social gets it. Our approach to respiratory infections makes no sense. It’s been made to be all about what’s not too hard, not what’s right.
@juliadoubleday.bsky.social gets it. Our approach to respiratory infections makes no sense. It’s been made to be all about what’s not too hard, not what’s right.
CDC infection control body rejects the science on airborne transmission
HICPAC continues to stonewall efforts to evolve infection control guidance to match updated information about COVID and other common viruses.
open.substack.com
December 7, 2024 at 12:11 AM
I can’t even.
@juliadoubleday.bsky.social gets it. Our approach to respiratory infections makes no sense. It’s been made to be all about what’s not too hard, not what’s right.
@juliadoubleday.bsky.social gets it. Our approach to respiratory infections makes no sense. It’s been made to be all about what’s not too hard, not what’s right.
Exciting news! Visible Armband 2.0 is now available. 🔋Longer battery life, easier charging! Donate your old device to support the community, donation programme will be facilitated by @actionforme.bsky.social @longcovidsupport.bsky.social. Details 👇 #pwME ##pwLC
www.makevisible.com/blog/introdu...
www.makevisible.com/blog/introdu...
Introducing: Visible Armband 2.0
www.makevisible.com
December 6, 2024 at 5:35 PM
Exciting news! Visible Armband 2.0 is now available. 🔋Longer battery life, easier charging! Donate your old device to support the community, donation programme will be facilitated by @actionforme.bsky.social @longcovidsupport.bsky.social. Details 👇 #pwME ##pwLC
www.makevisible.com/blog/introdu...
www.makevisible.com/blog/introdu...
Reposted by Julie Houston
We have written a blog article that summarizes the problems with the BMJ review on Long Covid interventions (Zeraatkar et al. 2024).
Inconsistency in how imprecision was evaluated seems to be the key issue. Suspect that a correction will be needed.
mecfsskeptic.com/the-bmj-revi...
Inconsistency in how imprecision was evaluated seems to be the key issue. Suspect that a correction will be needed.
mecfsskeptic.com/the-bmj-revi...
The BMJ review on Long Covid interventions - ME/CFS Skeptic
Earlier this week, a new systematic review of interventions for Long Covid was published inContinue readingThe BMJ review on Long Covid interventions
mecfsskeptic.com
December 4, 2024 at 4:28 PM
We have written a blog article that summarizes the problems with the BMJ review on Long Covid interventions (Zeraatkar et al. 2024).
Inconsistency in how imprecision was evaluated seems to be the key issue. Suspect that a correction will be needed.
mecfsskeptic.com/the-bmj-revi...
Inconsistency in how imprecision was evaluated seems to be the key issue. Suspect that a correction will be needed.
mecfsskeptic.com/the-bmj-revi...
Reposted by Julie Houston
No #pwME wants to feel they have no choice but to sign this petition but we've been let down so badly that it's come to the point where this petition has been made necessary.
Please sign & share if you feel the same way ✍️🔄
#ME #MEcfs
www.change.org/p/me-associa...
Please sign & share if you feel the same way ✍️🔄
#ME #MEcfs
www.change.org/p/me-associa...
Sign the Petition
ME Association Chair Neil Riley must step down
www.change.org
December 5, 2024 at 12:08 PM
No #pwME wants to feel they have no choice but to sign this petition but we've been let down so badly that it's come to the point where this petition has been made necessary.
Please sign & share if you feel the same way ✍️🔄
#ME #MEcfs
www.change.org/p/me-associa...
Please sign & share if you feel the same way ✍️🔄
#ME #MEcfs
www.change.org/p/me-associa...
Reposted by Julie Houston
Here is a link to a video about Ron Davis and Rob Phair’s work on the itaconate shunt with the scientists at the University of Utah. We spoke to the Bay Area MECFS support group and it was recorded over Zoom. drive.google.com/file/d/1rKf1...
Dr Davis and Janet Ph.D.mp4
drive.google.com
December 6, 2024 at 9:21 AM
Here is a link to a video about Ron Davis and Rob Phair’s work on the itaconate shunt with the scientists at the University of Utah. We spoke to the Bay Area MECFS support group and it was recorded over Zoom. drive.google.com/file/d/1rKf1...
Reposted by Julie Houston
paywalled. @abrokenbattery.bsky.social usually rescues us :-D
"The NHS is carrying out an assessment of myalgic encephalomyelitis...Andrew Gwynne, the health minister, has committed to better research “with the aim of better understanding the causes, identifying new treatments and improving patient outcomes”." #mecfs #cfsme
www.thetimes.com/uk/healthcar...
www.thetimes.com/uk/healthcar...
NHS to review ME services after death of Maeve Boothby O’Neill
Health minister and Nice commit to work to improve patient outcomes after landmark inquest
www.thetimes.com
December 6, 2024 at 9:23 AM
paywalled. @abrokenbattery.bsky.social usually rescues us :-D
Reposted by Julie Houston
chng.it/K8cKmwdw75 A petition asking Riley to do what any honourable person would have done already. I am so sorry the MEA has to be shamed this way.
We all expect charities are a force for good. Corruption has to be checked, like rot.
We all expect charities are a force for good. Corruption has to be checked, like rot.
Sign the Petition
ME Association Chair Neil Riley must step down
chng.it
December 6, 2024 at 5:54 AM
chng.it/K8cKmwdw75 A petition asking Riley to do what any honourable person would have done already. I am so sorry the MEA has to be shamed this way.
We all expect charities are a force for good. Corruption has to be checked, like rot.
We all expect charities are a force for good. Corruption has to be checked, like rot.
Reposted by Julie Houston
Please share widely! This was the best an inquest could do. It took 4 years and the death of my only child to get here.
NHS England must keep to this promise; the simplest change to a long established narrative that killed Maeve and threatens every other person with #ME.
🙏 @gwynnemp.bsky.social
NHS England must keep to this promise; the simplest change to a long established narrative that killed Maeve and threatens every other person with #ME.
🙏 @gwynnemp.bsky.social
🧵 #MaeveInquest update. A world first is promised.
NHS England's response states (where they were refusing to discuss commissioning of a specialist service for ME to prevent starvation, which is the best metaphor for #ME and #LongCovid during the inquest) NHS Executive is currently in talks with NHS
NHS England's response states (where they were refusing to discuss commissioning of a specialist service for ME to prevent starvation, which is the best metaphor for #ME and #LongCovid during the inquest) NHS Executive is currently in talks with NHS
December 6, 2024 at 8:20 AM
Please share widely! This was the best an inquest could do. It took 4 years and the death of my only child to get here.
NHS England must keep to this promise; the simplest change to a long established narrative that killed Maeve and threatens every other person with #ME.
🙏 @gwynnemp.bsky.social
NHS England must keep to this promise; the simplest change to a long established narrative that killed Maeve and threatens every other person with #ME.
🙏 @gwynnemp.bsky.social