Julie Houston
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julesahouston.bsky.social
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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julesahouston.bsky.social
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
August 4, 2025 at 5:05 PM
julesahouston.bsky.social
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
July 31, 2025 at 11:27 AM
julesahouston.bsky.social
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
May 12, 2025 at 8:34 AM
julesahouston.bsky.social
Remembering Refaat Alareer.
23 September 1979 – 6 December 2023
#FreePalestine #EndGazaGenocide #CeasefireNOW #Gaza
A twitter post dated 1 Nov 2023 by Rafaat in Gaza @itranslate123, saying , If I must die, let it be a tale.#FreePalestine #Gaza. Screenshot headed If I Must Die Refaat Alareer. If I must die, you must live to tell my story to sell my things to buy a piece of cloth and some strings, (make it white with a long tail) so that a child, somewhere in Gaza while looking heaven in the eye awaiting his dad who left in a blaze — and bid no one farewell not even to his flesh not even to himself — sees the kite, my kite you made, flying up above, and thinks for a moment an angel is there bringing back love. If I must die let it bring hope, let it be a story.
December 6, 2024 at 12:39 AM
julesahouston.bsky.social
Really needed something lighthearted today, thanks for sharing. I've just done mine. 😂
I
December 5, 2024 at 12:51 PM
julesahouston.bsky.social
Sending Dr Claire Taylor the best of luck for the GP Awards on Friday. Her dedication to helping #LongCovid & #MECFS patients is truly inspiring. She's made a significant difference to countless lives. Grateful for her kindness, compassion & advocacy. #ThereForME
events.cogora.com/generalpract...
Alt text: A dark blue background with gold geometric shapes in an Art Deco style. The text "GENERAL PRACTICE AWARDS" is in white, followed by "Friday 6 December 2024" in white. A button labeled "VIEW SHORTLIST" is below that. A countdown timer shows 2 days, 21 hours, 1 minute, and 49 seconds.
December 3, 2024 at 9:04 PM
julesahouston.bsky.social
Fabulous merchandise available at the LCA shop. Just purchased this brilliant t-shirt & some other goodies. Please support the valuable work of @longcovidadvoc.bsky.social. Profits help to fund groundbreaking research by ME Research UK & Polybio. Don't miss the 10% off code. #MECFS #LongCovid #pwME
A black t-shirt with a vibrant pink circle in the center. Inside the circle is a portrait of Frida Kahlo. Below the portrait, in white text, is the quote "WELL BEHAVED WOMEN RARELY MAKE and in vibrant pink text HERSTORY. Price is £22.
November 22, 2024 at 4:56 PM
julesahouston.bsky.social
Paragraph of text from page 27 of the survey. Additionally, NHS Greater Glasgow and Clyde highlighted a range of interventions and service developments that it is currently trialling or planning to support people with ME/CFS. Support includes: • The Lightning Process within ME/CFS and long COVID Unit, • Shared learning and working through induction of AHPs from Neurological Outpatients Department and Pain Services, • Class focused on pacing and new guidelines around movement as a bridge between physio and community services, • Occupational Therapy support to provide holistic (mental and physical health) non-pharmacological interventions that optimise function and enhance quality of life.
November 20, 2024 at 6:34 PM
julesahouston.bsky.social
Warning! There is a fake Care For Gaza account on this site. Please see post below, report and block. #CareForGaza #Gaza #Palestine
x.com/CareForGaza/...
Post from X by @CareForGaza showing screenshot of fake account @careforgaza on bluesky. It says - There is a fake account on the new platform Bluesky going around using our username and posting a gofundme that was NOT created by us. This is someone posing as us and it is fraud. Please help us get their account on both platforms taken down.
November 18, 2024 at 10:33 PM
julesahouston.bsky.social
Don't think so, not so far anyway. Wish she would just stop. Like a dog with a bone.
November 17, 2024 at 9:53 PM
julesahouston.bsky.social
And Liz is getting in on the act. 🤦‍♀️ So much blooming drama!
November 17, 2024 at 9:48 PM
julesahouston.bsky.social
November 17, 2024 at 9:45 PM
julesahouston.bsky.social
November 17, 2024 at 9:44 PM
julesahouston.bsky.social
Unbelievably she's at it again. Wish people would stop interacting with her.
Thread shared from X, too long to create alt text for.
November 17, 2024 at 9:43 PM
julesahouston.bsky.social
I know, right? 🙄 Meanwhile, praise be for DR T.
Image shows a thread from X showing comments made by Dr Claire Taylor disagreeing with the comments made by S Blitshteyn MD.
November 17, 2024 at 1:44 AM
julesahouston.bsky.social
It appears so. But having a pop at Dr Claire Taylor now!
Screenshot showing a post from X Dr Claire Taylor says - "I’ll just keep cleaning up the mess of people bedbound by bad advice. By bedbound I mean tube fed, in the dark, unable to talk. I have several in this state after autonomic testing. People who regularly did marathons don’t suddenly become scared to walk. Utter nonsense." And reply from S Blitshteyn saying -"You're cleaning up none of MY patients. You stick to yours, and I'll stick to mine. As you know, there are plenty of complex patients for everyone, sadly."
November 17, 2024 at 12:53 AM
julesahouston.bsky.social
She's still at it.
A line graph showing ups and downs with the text "You Are Not a Machine" and "Your 'Best' Will Look Different Each Day (and that's totally okay!)"
November 16, 2024 at 7:32 PM
julesahouston.bsky.social
I just grabbed a QT3 Portable Air Purifier for an amazing £30 in the @smartairuk.bsky.social Customer Loyalty Sale! Plus, they’re offering 10% off all other products. Excited to have some extra protection for future medical appointments.
#CleanAirForAll #COVIDisAirborne #MaskUp #CovidIsNotOver
A white and brown portable air purifier with a handle. It has a small, square design with a grille on the front and a visible HEPA filter. Text on the image highlights its portability and air-cleaning capabilities.
November 15, 2024 at 4:47 PM
julesahouston.bsky.social
Good morning. The lovely Penny is struggling to connect with the #MECFS community. She has very limited spoons, please say hello & give her a follow. You may recognise her from her profile in the other place. bsky.app/profile/theo...
A Twitter profile for penny #ME. The bio reads: "31yrs severe #ME/CFS (80% whitney scale). Lone mother of three. Left/Green. Hermit and outcast. Trying to care for my adult daughter. Deteriorating. I am scared." The user is located in the U.K. and joined Twitter in May 2016. They are following 3,473 accounts and have 1,858 followers.
November 14, 2024 at 10:28 AM
julesahouston.bsky.social
Warning! There's a new brain retraining app for #MECFS #LongCovid doing the rounds. "Take control in less than 15 minutes a day with the groundbreaking new neuroscience app." Hidden cost of course but it's ok, it's "backed by science". Cue influx of friends & relatives asking if you've tried this.
A teal colored image with the Freeme logo in white cursive font. Below it, in black boxes, are the words "ME/CFS" and "Long Covid". At the bottom, it says "Now available on iPad!" with an image of an iPad. An iPad displaying the Freeme app. The main screen shows a teal background with a white box containing the text "It's Not Stress." Below this, there are options to "Add to favorites" and "See notes." The top of the screen shows the time, battery level, and a close button.
November 12, 2024 at 10:38 PM
julesahouston.bsky.social
"Patients with ME have one of the worst qualities of life of any disease but have faced decades of substandard care and insufficient research funding." #ThereForME campaign writes to the Chair of the Health and Social Care Committee calling for an inquiry.
#MECFS #LongCovid

tr.ee/ukMtGn13nJ
Page 1 of a letter headed #ThereForME to Layla Moran, Chair of the Health and Social Care Committee calling for a inquiry into ME & Long Covid. Page 2 of the letter which shows a list of 28 organisations supporting the request. Full text of letter is available here https://tr.ee/ukMtGn13nJ
October 28, 2024 at 10:48 AM
julesahouston.bsky.social
Glorious news! It looks like Simon Wessely may finally be exposed. There is a documentary on the Gulf War Scandal in the offing. Follow either of these accounts in the other place for updates.
#vaccinedamage #vaccinedeaths #GulfWarSyndrome #MECFS #GulfWarIllness #MyalgicEncephalomyelitis #LongCovid
October 27, 2024 at 1:35 PM
julesahouston.bsky.social
My copy of "Living Well with #OrthostaticIntolerance: A Guide to Diagnosis & Treatment" has just arrived! Now to read. #POTS #Dysautonomia #OI #MECFS #LongCovid #Fibromyalgia #Lyme #EDS #Myalgicencephalomyelitis #pwME
A book cover titled "Living Well with Orthostatic Intolerance: A Guide to Diagnosis and Treatment" by Peter C. Rowe, MD, resting on an oak table with an amber candle holder in the background.
August 24, 2024 at 10:41 AM
julesahouston.bsky.social
Rest now Isla. 18 years old. May 2024. #VerySevereME #MillionsMissing #RadicalChangeForME #GreatestMEdicalScandal #EnoughisEnough #pwME
August 23, 2024 at 7:35 AM
julesahouston.bsky.social
We've lost another of our own. Another young woman who never got to live her life, never got to fulfil her potential, didn't make it to her 19th birthday.
#VerySevereME #MedicalNeglect #GreatestMEdicalScandal #EnoughisEnough #pwME
August 23, 2024 at 7:25 AM