Author | Lightnews

Julie Houston

@julesahouston.bsky.social

2.3K followers 1.1K following 500 posts

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

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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

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Reposted by Julie Houston

DecodeME @decodemestudy.bsky.social · Aug 4

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.

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Julie Houston @julesahouston.bsky.social · Aug 4

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! 🤞🙏

We are writing to let you know that the initial DNA results from the DecodeME study will be available in the next few days. We plan to send you an email with our findings on Wednesday 6th August around 7pm. We will also be announcing the results on our website at this time.
We're letting you know the timing in advance so you can pace yourself if needed. Thank you for your continued support and we look forward to sharing more very soon. Warmest wishes,
The DecodeME Team

Reposted by Julie Houston

Yann (ME/LC) @me-cfs.bsky.social · Jul 31

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.

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

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Julie Houston @julesahouston.bsky.social · Jul 31

I have deleted my previous post at the request of @swastrosarah.bsky.social as the family thankfully now have legal assistance. #PwME #MEKills

Screenshot of previous post saying- URGENT call for legal assistance #PwME

Julie Houston @julesahouston.bsky.social · Jul 31

Glad to hear it. Will do.

Reposted by Julie Houston

sarah boothby @swastrosarah.bsky.social · Jul 31

@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.

sarah boothby @swastrosarah.bsky.social · Jul 31

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

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Julie Houston @julesahouston.bsky.social · Jul 31

Omg Sarah! Can’t believe what I am reading. The horror of it all.

Reposted by Julie Houston

Defend Our Juries @defendourjuries.bsky.social · Jul 26

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

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Reposted by Julie Houston

Smart Air UK @smartairuk.bsky.social · Jul 2

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

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Reposted by Julie Houston

Air Library Scotland @airlibraryscotland.bsky.social · Jul 1

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...

Text: Request form now open! We’re now ready to accept requests from individuals and organisations who want to borrow air purifiers in the Edinburgh area Please read this post before putting in a request! Behind the headline, a dark blue hexagon with yellow shadow, with light blue extending out from it to the right. All images have the Air Library Scotland blue pinwheel in a yellow circle in the bottom left corner.

Second image. Text: How it works 1: Follow the link in our bio to the cryptpad request form 2: Fill out the form: When you want the purifier, for how long, what kind of space/event you’re wanting it for - we can help you find the right model for your use case if you’re unsure 3: We’ll get back to you within 7 days to let you know if we have purifiers available for your chosen dates, and discuss the details 4: Get your air purifier & breathe safer air! We can also help with creating a clean air policy or providing other precautions.

Third image. Text: Who can borrow? Any individual or organisation can borrow an air purifier! You could use it for.... organising meetings, social clubs, gigs, readings & exhibitions, medical appointments, and more! NB: our purifiers have limited portability. We might be able to accommodate longer-term requests but chances are higher the further in advance you contact us about them. Loans are free by default but we accept donations to keep up with maintenance costs.

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Julie Houston @julesahouston.bsky.social · May 27

"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."

The Guardian @theguardian.com · May 26

UK must impose sanctions on Israel to meet legal obligations, say more than 800 lawyers

Exclusive: Letter to PM signed by retired supreme court justices among others says lack of action will imperil international legal system The UK must impose sanctions on the Israeli government and its ministers and also consider suspending it from the UN to meet its “fundamental international legal obligations”, more than 800 lawyers, academics and retired senior judges, including former supreme court justices, have said. In a letter to the prime minister, they welcome Keir Starmer’s joint statement last week with the leaders of France and Canada warning that they were prepared to take “concrete actions” against Israel. But they urge him to act without delay as “urgent and decisive action is required to avert the destruction of the Palestinian people of Gaza”. Continue reading...

www.theguardian.com

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Reposted by Julie Houston

Valerie Eliot Smith @valerieeliotsmith.bsky.social · May 16

@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...

Katharine Cheston @kacheston.bsky.social · May 16

The BMJ has now published my rapid response to Miller et al's Opinion piece.

www.bmj.com/content/389/...

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Reposted by Julie Houston

Katharine Cheston @kacheston.bsky.social · May 15

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…

References

1. Miller, A; Symington, F; Garner, P; Pedersen, M. Patients with severe ME/CFS need hope and expert multidisciplinary care. BMJ 2025;389:r977. doi.org/10.1136/bmj.r977

2. National Institute for Health and Care Excellence. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. 29 Oct 2021. https://www.nice.org.uk/guidance/ng206

3. Geraghty, K; Hann, M; Kurtev, S. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. J Health Psychol 2019;24:1318-1333. doi:10.1177/1359105317726152

4. Vink, M; Vink-Niese, A. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open 2018;5:2055102918805187. doi:10.1177/2055102918805187

5. Kindlon, T. Do graded activity therapies cause harm in chronic fatigue syndrome? J Health Psychol 2017;22:1146-1154. doi:10.1177/1359105317697323

6. Geraghty, K; Esmail, A. Chronic fatigue syndrome: Is the biopsychosocial model responsible for patient dissatisfaction and harm? Br J Gen Pract 2016;66:437-438. doi:10.3399/bjgp16X686473

7. Cheston, K. (Dis)respect and shame in the context of ‘medically unexplained’ illness. J Eval Clin Pract 2022;28:909–916. doi:10.1111/jep.13740

8. Sharpe, M. Cognitive Behaviour Therapy for Functional Somatic Complaints: The Example ofChronic Fatigue Syndrome. Psychosomatics 1997;38:356-362. doi.org/10.1016/S0033-3182(97)71443-9

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Julie Houston @julesahouston.bsky.social · May 16

Thank you.🙏

Julie Houston @julesahouston.bsky.social · May 12

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Julie Houston @julesahouston.bsky.social · May 12

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Julie Houston @julesahouston.bsky.social · May 12

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Julie Houston @julesahouston.bsky.social · May 12

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

Square text box with blue background. Text in white saying 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

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Reposted by Julie Houston

Parkinson's Europe @parkinsonseurope.bsky.social · Feb 12

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

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Reposted by Julie Houston

Long Covid Advocacy Ireland-LCAI @lcaireland.bsky.social · Feb 7

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

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?…

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Julie Houston @julesahouston.bsky.social · Feb 2

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...

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

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Julie Houston @julesahouston.bsky.social · Jan 11

Great to see @batemanhornecenter.bsky.social here! #PwME #pwLC

Bateman Horne Center @batemanhornecenter.bsky.social · Jan 10

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

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Julie Houston @julesahouston.bsky.social · Dec 16

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Julie Houston @julesahouston.bsky.social · Dec 15

go.bsky.app/J1e2nzR

Julie Houston @julesahouston.bsky.social · Dec 15

go.bsky.app/42cuLif