Julie Houston @JulesAHouston Twitter profile

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Julie Houston

9 months

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. #MEAwarenessHour @worldprods @KenLoachSixteen #ExposeMENow

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Julie Houston

@JulesAHouston

2 years

I had my first appointment with the amazing @drclairetaylor earlier this week and just WOW! She was lovely, so kind & understanding. It is no exaggeration to say that she has helped me more in 45 minutes than the NHS has done in 24 years. 🧵

Long Covid Clinic | Dr Claire Taylor

Dr Claire Taylor Long Covid, MCAS, POTS, ME/CFS Specialist

www.drclairetaylor.com

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Julie Houston

@JulesAHouston

1 year

On Severe ME Understanding and Remembrance Day my thoughts are with all those suffering silently, chained to their beds, hiding in the shadows, waiting in vain for a better day that never arrives. #SevereMEDay #EndMEMalnutrition #MyalgicEncephalomyelitis

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Julie Houston

@JulesAHouston

7 months

"Millie is declining further in hospital and has communicated she can only stand a few more days and needs to go home extremely urgently. She can no longer get out of bed at all and even turning over in bed is becoming a big struggle." #SaveMillie

Latest update - and please keep sharing

This photo is Millie before she came so unwell. Millie’s family have the following update: Millie is declining further in hospital and has communicated she can only stand a few more days and needs...

www.change.org

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Julie Houston

@JulesAHouston

1 year

This year it's my silver M.E. anniversary so I think it's finally time to accept that I won't be wearing these again. #MEAwarenessWeek seems like an apt time to let them and all that they signify go. 😥 #MEAwarenessHour #CanYouSeeMENow #MillionsMissing #LearnFromME

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Julie Houston

@JulesAHouston

7 months

Update! Things have been much better for @Mariararoo since she's been moved to her own room. Most of the nurses & drs are treating her with care. One of the consultants she saw earlier in her stay visited her this week & has now read the NICE guideline. What a breakthrough! 🧵

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Julie Houston

@JulesAHouston

8 months

Update! "Millie continues to be a patient in Royal Lancaster Infirmary. She has very severe ME and, prior to her mistreatment by the hospital, was estimated to have a mere 3% capacity by Dr Speight." 🧵 #VerySevereME #NHSProtocol4SevereMENow #DontLetMeDie

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Julie Houston

@JulesAHouston

3 years

"I worry that this guideline seems to suggest that patients need to learn to live with CFS/ME, rather than be helped to recover from it." Yes Peter White, this has been our reality for decades! Imagine where we would be now if the focus had been on biomedical research. #pwME

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Julie Houston

@JulesAHouston

6 months

This is a big day for Millie & her family. In addition to the Twitterstorm at 11am, there will be a protest outside the RLI & her story will be covered by @ITVGranadaTV . Very grateful to @JoshuaStokesITV . Big thanks also to @NickyProctor @juancorlett who made this happen.

@TheChronicCollaboration

@TheChronicColab

6 months

URGENT #BringMillieHome #DontLetMEDie We are in Lancaster at the request of Millie's family, Lucy and Abbie. We spent a few hours with them last night and they are amazing people. Why are we here? Watch below and sorry there's no captions 😔

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Julie Houston

@JulesAHouston

2 years

I'm not adequately expressing all I want to say ( brain mostly on holiday & it has taken me so long to compose this) but you get the picture. Dr Taylor's parting words to me "Go home & rest, that's Drs orders!" No other dr has told me to rest - ever! /End

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Julie Houston

@JulesAHouston

2 years

I left the appt stunned really & laughed hysterically most of the way home. Now, a few days later, feeling 😭. Just starting to realise the extent of anger I have been holding in for so long. Sinking in that there is a degree of trauma caused by the medical profession. /4

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Julie Houston

@JulesAHouston

6 months

This is 2024, not 1924. We won't accept this treatment any longer @gmcuk @rcpsych @RCPhysicians . NICE guideline NG206 routinely ignored by HCPs @NICEComms . Patients abused, harmed & neglected. #SaveCarlasLife #ExposeMENow #SevereME #VerySevereME #MedTwitter #DontLetMeDie

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Julie Houston

@JulesAHouston

7 months

Update from the family, Millie has an official ME/CFS diagnosis! "On 15/03/24 Dr Weir sent a very clear letter stating that Millie’s diagnoses is ME/CFS and for this to be added to her medical records." #SaveMillie #VerySevereME #DontLetMeDie #MEKills

Update about Millie from her family

Millie has an official ME/CFS diagnosis!!! On 15/03/24 Dr Weir sent a very clear letter stating that Millie’s diagnoses is ME/CFS and for this to be added to her medical records. For over a week now...

www.change.org

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Julie Houston

@JulesAHouston

6 months

Update! Please keep Millie and her family in your thoughts #pwME #SaveMillie #VerySevereME #MedicalNeglect #MedicalAbuse

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Julie Houston

@JulesAHouston

8 months

Millie's petition is now live. Please sign & share widely. #DontLetMeDie #EndMalnutritioninME #VerySevereME #NHSProtocol4SevereMENow #severeME Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm - Sign the Petition! via @UKChange

Sign the Petition

Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

www.change.org

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Julie Houston

@JulesAHouston

1 year

Anthony Komaroff has just been speaking in Berlin. Discussing the similarity of symptoms in #LC & #ME and similar underlying biological abnormalities. His paper analysing the results of over 1,000 studies will be published in the next few weeks. Some slides included below. /1

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Julie Houston

@JulesAHouston

6 months

The despair, the distress, the fear, the pain. Our hearts break for Carla. Seizure like episodes, ignored. Unconsciousness, ignored. NICE guidelines, ignored. No care, no compassion. It's barbaric! #SaveCarlasLife #StopTheAbuse #ExposeMENow #MedicalNeglect @NHSuk @gmcuk @theRCN

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Julie Houston

@JulesAHouston

7 months

Jenny Wilson has posted an update on FB."The staff are just now grumbling about the deluge of cards pouring in for Millie, so please keep sending.They know they are being observed by the patient community. Keep them coming!" Thanks @LiminalME2022 sharing. #TeamMillie #SaveMillie

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Julie Houston

@JulesAHouston

6 months

"Medical education on ME/CFS in the UK has not progressed in the past 20 years. 41% of UK medical schools don’t teach ME/CFS at all. Meanwhile, a 2021 survey of UK doctors found that 73% had learned nothing at all about ME/CFS during their training."

The problems

Medical education on ME/CFS in the UK is of shockingly poor quality. ME/CFS is an incurable illness that is more debilitating than multiple sclerosis, stroke, or lung cancer.1 75% of sufferers are …

mecfs-med-ed.org

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Julie Houston

@JulesAHouston

8 months

Hi everyone, I have deleted the thread about Millie as there have been some changes so it was no longer entirely accurate. I have up to date information & will post this later. Thanks for sharing, the family are amazed that so much attention has been brought to Millie's case.

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Julie Houston

@JulesAHouston

7 months

Millie continues to decline & her family is extremely concerned. She still doesn't have the type of feeding tube in place that would allow her to go home. Please sign & share the petition as a matter of urgency. #SaveMillie #EndMalnutritioninME #severeME

Latest update - and please keep sharing

This photo is Millie before she came so unwell. Millie’s family have the following update: Millie is declining further in hospital and has communicated she can only stand a few more days and needs...

www.change.org

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Julie Houston

@JulesAHouston

7 months

As another week draws to a close please think of Millie who'll be enduring her 8th weekend stuck in hospital. She still doesn't have an NJ tube fitted nor does she have a planned discharge date. Please keep her in your thoughts. #SaveMillie #MedicalNeglect #VerySevereME #MEKills

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Julie Houston

@JulesAHouston

7 months

Millie is appealing the section & the hearing is tomorrow. Update below. Sending her & her family lots of love, strength & support. #SaveMillie #MedicalNeglect #MedicalAbuse #DontLetMeDie #EndMalnutritioninME #VerySevereME #severeME #TeamMillie

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Julie Houston

@JulesAHouston

2 years

It just can't sink in that I finally saw an HCP who didn't dismiss, disbelieve or ridicule me. She dx MCAS, POTS (prob/def OI, lean test coming up). Prescribed meds, referral to sleep clinic, chest xray & other tests. Writing to GP & hopefully will be able to get all on NHS./3

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Julie Houston

@JulesAHouston

9 months

They knew the benefits of ventilation in classrooms in 1916. Windows open, fresh air circulating. #COVIDisAirborne & yet there is no air filtration or CO2 monitors in our schools. We have the tools, why are they not being utilised? @CleanAirClassrm #CleanAirForAll #LongCovid

Old Glasgow

@OldGlasgowPics

9 months

Classroom At Hyde Park School Hyde Park Street, Springburn Glasgow 1916

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Julie Houston

@JulesAHouston

2 years

I can't describe how great it feels to finally see someone who totally gets it & is so knowledgeable about the illness & comorbidities. She is totally all over it. I'm still feeling overwhelmed & in a state of disbelief/shock, did this really happen? /2

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Julie Houston

@JulesAHouston

8 months

her own carer/advocate with her as much as she needs. Millie’s Mum is only "allowed" to visit for 2 hours every day and Abbie (her sister) is being encouraged to stay away for more hours in the day. This is a big worry as Millie is in such a vulnerable state." / End

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Julie Houston

@JulesAHouston

5 months

On this ME Awareness Day, my heart is with Carla, Karen, Millie, and many others whose stories remain untold, enduring mistreatment, neglect and abuse as inpatients within the NHS. #MEAwarenessDay #MillionsMissing2024 #ExposeMENow #BringMillieHome #SaveCarlasLife #CareforKaren

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Julie Houston

@JulesAHouston

5 months

Wow, what an incredible conference you put together @U2Fight_World . Blown away that 5 people achieved this in a few short months. Thank you @ClausErnst Christoph, Diana, @Gmwetz & Kim Now please go rest deeply. 🙏 #Unitetofight2024 #MyalgicEncephalomyelitis #LongCovid

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Julie Houston

@JulesAHouston

7 months

Good news! @Mariararoo is getting home tomorrow. The MDT meeting took place early & they sadly said no to the permanent feeding tube. They are letting her go home with the NG tube in place. Nurses will visit her at home & she'll be part of the virtual ward programme. /1

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Julie Houston

@JulesAHouston

7 months

"I feel like I’m going to die”. These were the haunting words of 18-year-old Millie McAinsh, wrongly sectioned and left without care in an NHS hospital." With grateful thanks to @TinyWriterLaura for this excellent article in @BylineTimes #SaveMillie

'A Rollercoaster Of Awful Emotions': Family Speaks Out for NHS Overhaul to Prevent Deaths of...

Millie McAinsh's family sought help when the M.E sufferer could no longer eat - only for her to to be sectioned.

bylinetimes.com

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Julie Houston

@JulesAHouston

6 months

An incredibly emotional interview with @therealmecfs on @Channel4News . Jo spent several hours filming while also working extremely hard behind the scenes for #TeamMillie . Thank you so much Jo for doing this to raise awareness for us all, very grateful. Link available tomorrow.

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Julie Houston

@JulesAHouston

8 months

her extreme hypersensitivity to light. However the psychiatrists that sectioned Millie alluded to Millie using/needing to be in a dark room as a way to control others and suggested that she doesn’t need to wear an eye mask. The hospital is trying to stop Millie from having /7

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Julie Houston

@JulesAHouston

1 year

It's common how much we dread the bath/shower thing, how much effort it takes & the after effects. Well, guess what? It's not all in our heads. Validation from Visible Plus. I've discovered that it uses up between 52-112% of my daily pace points. #pwME #pwLC @visible_health

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Julie Houston

@JulesAHouston

6 months

Update on Miilie. The hospital does not accept that Dr Weir's diagnosis of #SevereME is sufficient as he doesn’t work within the NHS. #BringMillieHome

Etta Loveday

@EttaLovedayME

6 months

Update about Millie: Petition Fundraiser #BringMillieHome #MilliesevereME #SevereME #pwME #saveMillie #DontLetMEDie

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Julie Houston

@JulesAHouston

7 months

Blown away that Millie's petition already has over 5,500 signatures. Please keep signing & sharing. #VerySevereME #TeamMillie #NHSProtocol4SevereMENow #DontLetMeDie #MEKills #EndMalnutritioninME #SaveMillie #pwLC #pwME

Sign the Petition

Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

www.change.org

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Julie Houston

@JulesAHouston

7 months

Excellent news!! I thought you would all like to know that @Mariararoo is currently in an ambulance on her way home. 🥳 The great escape has commenced! 🥳 #pwME

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Julie Houston

@JulesAHouston

7 months

"Watching our community lose people to this illness time and time again never gets easier. But what makes it far worse, is that governments and medical professionals aren’t paying attention." @TinyWriterLaura 's article about @KaraJaneSings from last year.

Kara Jane died of M.E. When will we take post-viral illness seriously? - The Unwritten

TW: This piece discusses the sudden death of a disabled person, Kara Jane. Please take care when reading Two days into 2023, the friends of bedbound musician Kara Jane, 32, shared the heartbreaking...

www.theunwritten.co.uk

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Julie Houston

@JulesAHouston

7 months

How incredible this community is. Some of Millie's cards are now up on her wall. A tangible display of the concern, love, warmth & support she has from us all. Just fabulous! Please keep signing & sharing the petition. #TeamMillie #EndMalnutritioninME #MECFS

Etta Loveday

@EttaLovedayME

7 months

Some of Millie’s cards are now up on her wall for all to see how much love and support she has from the ME community! More to be added soon! Petition #SevereME #MilliesevereME #pwME

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Julie Houston

@JulesAHouston

7 months

Maria is currently in a crash following her gastric emptying test yesterday which "was a gruelling ME nightmare". No meds permitted & no muscle relaxant during transfer to the other hospital. She had to endure a very bright room & construction noise from outside. /1 @Mariararoo

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Julie Houston

@JulesAHouston

8 months

understand the severity of her ME and the dangers of normal hospital protocols on worsening her condition possibly irreversibly or for a very long time (years). The hospital has refused to listen to the two well-known UK ME experts who have 60 years combined experience in /3

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Julie Houston

@JulesAHouston

8 months

"Since then, she has deteriorated on account of the NICE guidelines for ME either not being acknowledged nor followed or not taking precedence in Millie’s care in hospital. Many of the consultants involved in Millie’s care either believe her condition is mental or don’t /2

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Julie Houston

@JulesAHouston

7 months

A big shout out on #LongCovidAwarenessDay to all those who have been working so hard & tirelessly on behalf of the #LongCovid community. We see you! @LongCovidKids @cv_cev @LCKScotland @long_covid @LongCovidAdvoc @LongCovidSOS @drclairetaylor @ZeroCovidScot @LongCovidScot

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Julie Houston

@JulesAHouston

10 months

"Nothing is going to bring Maeve back to life. I'm not there for Maeve. I'm there for all the other people with ME, especially those with severe & very severe ME who have been so abandoned." While enduring this process & amidst unimaginable grief @swastrosarah advocates for us.

davidtuller

@davidtuller1

10 months

I spoke earlier with @swastrosarah about the pre-inquest hearing related to the death of her daugher, Maeve Boothby O'Neill, from ME-related complications. Here's a recording of our conversation (it's on youtube but it's audio only):

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Julie Houston

@JulesAHouston

1 year

"It says patients should no longer feel “blamed for being ill, staying ill or experiencing deteriorating symptoms” and must “experience the same standard of care as people with other long-term health conditions”. #pwME

Sean O'Neill

@TimesONeill

1 year

the @DHSCgovuk is publishing the first report from its ME working group: calling for better care, less dismissive attitudes towards patients,more research - #pwme and their carers can submit responses and help shape the final policy

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Julie Houston

@JulesAHouston

5 months

We can all relate to these words by @thane_black . The harder you push yourself, the sicker you become. #MEAwarenessDay #ExposeMENow #TeachMETreatME #MyalgicEncephalomyelitis @Telegraph @lauradonnlee @michaelsearles_ @EmilyLCraig

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Julie Houston

@JulesAHouston

6 months

. @MECFS_Med_Ed explains why the abuse of #pwME occurs 1. Poor Medical education 2. Lack of awareness of NICE guideline 3. Absence of an NHS protocol 4. Disregard for expert opinion 5. Failure of leadership #SaveCarlasLife #ExposeMENow #VerySevereME

Explainer: Why are chronically ill people protesting at West Middle...

People with severe ME are routinely harmed and mistreated in UK hospitals. This video explains the background to the #SaveCarlasLife protest, the ways in whi...

www.youtube.com

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Julie Houston

@JulesAHouston

4 months

Thanks to your donations Millie now has private carers for a few hours a day. The family wants to continue with this & use the same care company when she is eventually discharged. Please see the update with details of how to contribute. #BringMillieHome

Thank you all so much for signing this petition, we now need more help please...

We have set up a fundraiser to cover various costs for Millie: https://gofund.me/a7547622 and here is an update: Week 18 - Millie continues to deteriorate and struggle in the hospital environment....

www.change.org

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Julie Houston

@JulesAHouston

10 months

On the day of Maeve's hearing more concerning news. Karen's situation continues to deteriorate. "Karen is extremely thin, continuing to get thinner and is dehydrated." Filled with fury that this is happening again & again & again. How many must die? #PWME

Karen desperately needs I/V feeding at a local hospital now.

Thanks to everyone who has contacted Joe Chadwick-Bell, the CEO of East Sussex Healthcare NHS Trust (ESHT), about Karen. It is very helpful of you. It has been more than 2 months since we emailed...

www.change.org

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Julie Houston

@JulesAHouston

6 months

There is now a fundraiser to help with legal expenses. Please contribute if you can & help #BringMillieHome . #SevereME

Help Millie and her family with legal and medical costs, organized by Abi Mills

*** UPDATE*** Week 18 - Millie continues to deteriorate and st… Abi Mills needs your support for Help Millie and her family with legal and medical costs

www.gofundme.com

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Julie Houston

@JulesAHouston

8 months

supporting severe ME patients. They informed the hospital that the hospital's treatment of the youngster could result in her death, but the staff ignored the warning and refused to communicate further. Millie is currently being feed via NG tube at 25-45% which is not possible /4

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Julie Houston

@JulesAHouston

7 months

A few of the nurses are interested in learning how to treat & care for patents with #severeME . Maria says that 'it means that the next patient with #severeME won't have to fight to be understood." She's doing a great job of advocating for us all from her hospital bed. /2

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Julie Houston

@JulesAHouston

6 months

Update Karen Gordon! Threats of legal action, the Court of Protection & yet another capacity assessment. "ESHT might send Karen home without IV feeding which she could not survive without." #VerySevereME #NHSProtocol4SevereMENow #MEKills

More stress and a plea to St Marks

Hello Everyone, We have been told that Karen might be given a deadline for when she has to give a decision about whether she agrees to go to St Marks Intestinal Rehabilitation Unit. Karen was told...

www.change.org

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Julie Houston

@JulesAHouston

8 months

code to communicate. Despite this and her agreeing to all life saving treatment the hospital has now sectioned under the Mental Health Act 1983 Section 2 and at present are detaining her to the hospital. Millie wears an eye mask & needs to be in a dark room on account of /6

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Julie Houston

@JulesAHouston

8 months

for a severe ME patient without causing further harm. Some professionals continue to maintain that in Millie’s very severe ME there is a ‘behavioural’/‘mental’ element. Despite not being able to speak from exhaustion Millie is deemed to have full mental capacity and uses a /5

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Julie Houston

@JulesAHouston

7 months

Oh quelle surprise! The usual suspects crawling out of the woodwork in the letter responses to the article this week by @GeorgeMonbiot . #pwME

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Julie Houston

@JulesAHouston

8 months

Maria has asked me to give an update. Things are not looking very positive. A nurse told her on Friday night that if her NG tube comes out again they will not replace it! They will instead try to get her eating & drinking again! 🧵 @Mariararoo #severeME #EndMalnutritioninME

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Julie Houston

@JulesAHouston

1 year

'Mitochondrial dysfunction, herpesvirus and autoimmunity in ME/CFS and Long Covid'. Presentation by @BhupeshPrusty in Berlin today. #MECFS #LongCovid

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Julie Houston

@JulesAHouston

9 months

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. #MEAwarenessHour @Ruth5News @littlegemtv @ITV #ExposeMENow

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Julie Houston

@JulesAHouston

6 months

"Millie's sister Abbie McAinsh, 22, who has been by her side every day, said: "It's totally heartbreaking, Millie is my best friend and I love her so much. I'm scared that Millie will be broken beyond repair, forever." Article by @iEllieFry #SaveMillie

'I can't walk, talk or eat - doctors don't believe me and I think I'll die'

Millie McAinsh says she's 'constantly hurting' and claims doctors 'won't listen' to her wishes. The distressed teen is believed to be suffering with ME, a debilitating illness that is often misunde...

www.mirror.co.uk

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Julie Houston

@JulesAHouston

5 months

Please sign this open letter to @sajidjavid ahead of Wednesday's debate. It highlights the current appalling situation for #severeME patients in our NHS hospitals. Let's draw parliament's attention to Carla, Karen & Millie & others. @TheChronicColab

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Julie Houston

@JulesAHouston

3 years

My wedding 1998. Within a few weeks all of the symptoms that had been building for months intensified & #ME hit me like a steam train. We never got our delayed honeymoon in the Seychelles or got to buy our dream house. Our lives were changed forever. #MEAwarenessDay @EmergeAus

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Julie Houston

@JulesAHouston

7 months

Some brighter news today from @Mariararoo . Finally, after 6 weeks she now has an understanding consultant who actually listens to her. She finally got moved to a room of her own with a wet room on Sunday night. However, she crashed after she was transferred. /1 #severeME #MECFS

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Julie Houston

@JulesAHouston

1 year

"But the BMJ should not have given space to what is essentially an opinion piece coming from a group of heavily biased authors. The BMJ’s readers are doctors, who trust the usually authoritative journal to provide accurate, up-to-date medical information."

Prestigious BMJ promotes ME/CFS misinformation

This post was updated on 16 July 2023 to say that many of the authors of the JNNP article are psychiatrists – the original version incorrectly stated that all of them are. The prestigious Bri…

mecfs-med-ed.org

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Julie Houston

@JulesAHouston

8 months

Things are looking far more positive for @Mariararoo . She's now been referred to a London hospital which specialises in gastroparesis, gut motality disorders & neurogastroenterology etc. A gastric emptying test is booked for 5th March & it's unlikely that she'll be transferred 🧵

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Julie Houston

@JulesAHouston

7 months

"The NICE guidelines have now been read by the hospital and the staff are trying to follow them. Millie’s ME is being believed although some consultants are still looking into psychiatric disorders on top of ME." #SaveMillie

UPDATE ON MILLIE'S CARE

Thank you to everyone who has signed and shared this petition. Update: The NICE guidelines have now been read by the hospital and the staff are trying to follow them. Millie’s ME is being believed...

www.change.org

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Julie Houston

@JulesAHouston

9 months

@ITV @Suej1959 Please investigate the neglect of #MECFS patients. I would add this resource to those already flagged.

valerieeliotsmith

Law and Health: due process and civil society

valerieeliotsmith.com

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Julie Houston

@JulesAHouston

7 months

Good morning #TeamMillie , an update from Millie's family. Please do not send unkind letters to the nursing staff who are doing their best to care for Milly. 🙏

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Julie Houston

@JulesAHouston

4 years

Of all the things I've lost, I miss me, myself, the most! #MEawarenesshour #millionsmissing

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Julie Houston

@JulesAHouston

4 months

Millie is having a PEG tube fitted today, keeping everything crossed that it's successful. Please keep her in your thoughts. 🙏 #BringMillieHome #SevereME #VerySevereME

Etta Loveday

@EttaLovedayME

4 months

Update about Millie - 06.06.24 Fundraiser Petition #MillieSevereME #SevereME #pwME #saveMillie #BringMillieHome #DontLetMEDie #ExposeMENow

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Julie Houston

@JulesAHouston

7 months

"Millie's care is still not being paced and it has been suggested that she doesn't have an official ME diagnosis, implying that the NICE guidelines for ME might not need to be followed, this is still happening even after Dr Weirs visit." #SaveMillie #MedicalAbuse #MedicalNeglect

Etta Loveday

@EttaLovedayME

7 months

Latest update about Millie. Petition Fundraiser #SevereME #saveMillie #MilliesevereME #pwME

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Julie Houston

@JulesAHouston

6 months

I'm going to be taking a little break from here for a few weeks. Leaving you with a thread of recent articles about Millie. This first one by @MrTopple , a fantastic ally, is from back in February & nothing substantial has changed. /1 #VerySevereME

Yet another woman with severe ME has been sectioned and abused by an NHS hospital

The NHS is catastrophically neglecting Millie, a young woman with severe ME. Her story seems shocking - but it's the third case this month

www.thecanary.co

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Julie Houston

@JulesAHouston

7 months

Does your heart break every time you hear of yet another paitient with #severeME #VerySevereME being mistreated in hospital? Do you want to see an #NHSProtocol4SevereMENow ? Then sign this open letter to @VictoriaAtkins . Pls share with friends & family.

Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.) - M.E....

Add your name:

organise.network

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Julie Houston

@JulesAHouston

7 months

Disappointing news from @DecodeMEstudy . The extraction of DNA at the UK Biocentre has faced operational and capacity difficulties. Funding has now been extended until August 2025 to allow sufficient time to finish the study. #MECFS #LongCovid

DecodeME completion date extended to August 2025 - DecodeME

07 March 2024 DecodeME was due to be completed by August of this year Extraction of the DNA from samples has taken far longer than anticipated Our funders have agreed to a funded timeline extension...

www.decodeme.org.uk

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Julie Houston

@JulesAHouston

6 months

Please give @C4News a watch tonight. All going well there may be an interview with a certain someone from the community. #pwME #PwLC #MyalgicEncephalomyelitis #LongCovid

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Julie Houston

@JulesAHouston

7 months

Banners, bears & billboards & it's just getting started. @LCMEBillboards event is well & truly underway. If you're supporting from home please post as much as you're able. Let's get this trending before noon. @TheChronicColab #LongCovidAwarenessDay @LC_UK_Action @long_covid

@TheChronicCollaboration

@TheChronicColab

7 months

Run down to parliament as @LC_UK_Action are also here supporting @LCMEBillboards campaign for #LongCovidAwarenessDay 👇

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Julie Houston

@JulesAHouston

1 year

BC have not included #MECFS in their 'pipeline'. They have identified other conditions with 'high unmet medical need' but apparently this doesn't encompass #pwME . Extremely disappointing. We remain Cinderellas again, no ball for us. We are always back of the queue. @BerlinCures

Dr. Markus Fraczek

@MarekSJF

1 year

BC updated their pipeline: Long Covid, heart failure, glaucoma, sinus bradycardia, and no ME/CFS. 🤔

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Julie Houston

@JulesAHouston

7 months

"If you chose to, you could install a feeding tube right now, and have Millie home this evening where she would be back in a safe environment able to limit her exposure to stimulus." Thanks @DafoeWhitney for advocating so strongly to #SaveMilly . @UHMBT @aaroncumminsNHS #severeME

Whitney Dafoe

@DafoeWhitney

7 months

Dear Royal Lancaster Infirmary…Millie needs a PEJ tube right now, this moment. Not in a few hours, not tomorrow, not in 5 weeks when she is dead. Right now. #SaveMillie #MECFS #NIH @NIHDirector @NINDSdirector @NIH @nathavindra New post on my blog:

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Julie Houston

@JulesAHouston

8 months

Rest easy Lauren. No more suffering, no more pain., you are free.

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Julie Houston

@JulesAHouston

5 months

"My doctor thought I was cuckoo and sent me to what he said were 'experts' - psychiatrists. One said I was trying to attract attention to myself and another that I was 'shirking work." Shirley Conran in an article from 2016. #MyalgicEncephalomyelitis

The one lesson I've learned from life: Shirley Conran on surviving ME

Shirley Conran, 83, is a journalist and author, best known for her books Superwoman and Lace.

www.dailymail.co.uk

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Julie Houston

@JulesAHouston

8 months

The latest update on Karen Gordon. "The IV feeding is going ok. Karen is still very thin though. The hospital is still not weighing Karen and tracking her weight on a weigh bed." #DontLetMeDie #EndMalnutritioninME #VerySevereME #severeME #pwME

Another update about Karen’s Hospital stay.

Hello everyone. The IV feeding is going ok. Karen is still very thin though. The hospital is still not weighing Karen and tracking her weight on a weigh bed. We are very concerned about this. Karen...

www.change.org

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Julie Houston

@JulesAHouston

7 months

This billboard launch was filmed by ITV & may appear in a documentary. Organised by @GarethEvans1977 a trustee at @long_covid to coincide with the Wales Covid Enquiry. @LongCovidKids @LongCovidAdvoc @LongCovidSOS @cv_cev @covidactionuk @LC_UK_Action @JoD

Billboards for LC/MECFS

@LCMEBillboards

7 months

Hi everyone. The billboard in Cardiff for the Covid inquiry has gone up. This board was put up by an independent and not directly by us. If you would like to support him, here is his GFM. Thanks to @GarethEvans1977 for the great work. #LongCovid #MECFS

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Julie Houston

@JulesAHouston

6 months

A tilt table test several times a week until Katie passed out. Not to test for POTS but because it was the physio's opinion that she was fainting because she was lying down too much! This is horrific abuse of a patient with #severeME . #SaveCarlasLife #ExposeMENow @physiosforME

Katie

@katie_andME

6 months

@chrisms150 @NeleHelena It wasn’t as a test. I was actually never tested for POTS since they said I was just fainting cause I was used to laying down. It was my phsyio. They would hoist me onto a tilt table, strap me to it and leave me stood up on it until I fainted or passed out.

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Julie Houston

@JulesAHouston

2 years

Bit of a strange one. Does anyone lose all of the colour from their lips when feeling particularly vile or in a crash? This has happened to me for years & wondered if it's just me? #pwME #LongCovid

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Julie Houston

@JulesAHouston

4 years

Just signed up @DecodeMEstudy . After 22 years I still have hope #MECFS

DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

"This is a landmark move from UK gov's two health-research funders. It looks as though both organisations are now serious about biomedical research for this disease." @sjmnotes on @The_MRC & @NIHRresearch in his straight-talking blog celebrating #DecodeME

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Julie Houston

@JulesAHouston

8 months

A really lovely idea from @MEActNetUK . Let's show Millie our support by sending her a card if you have the energy. I'm sure it will make the world of difference for her to know that so many of us are concerned about her & holding her in our thoughts.

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Julie Houston

@JulesAHouston

7 months

A message from @Mariararoo . "The M.E community really are so amazing! I can't find the words to express how greatful I am to be part of it, it really does feel like we are all in this together fighting for the care we should all be getting." She feels so supported, thank you all.

Julie Houston

@JulesAHouston

7 months

The response to #CardsforMillie has been overwhelming. Several members of the community asked if we could do the same for @Mariararoo . Maria is very touched & grateful for the support she's received. If you would like to send her a card it would be greatly appreciated. #pwME

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Julie Houston

@JulesAHouston

7 months

"Millie is continuing to decline, she feels like she is dying. She has now been in hospital for nearly 6 weeks and has told us daily that she is desperate to go home and can't stand another day in hospital." #SaveMillie #MedicalNeglect #DontLetMeDie #MedicalAbuse

Etta Loveday

@EttaLovedayME

7 months

Latest update about Millie. Petition Fundraiser #SevereME #saveMillie #MilliesevereME #pwME

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Julie Houston

@JulesAHouston

5 months

"BACME says that disordered eating is common in people with ME. They say that people who are not getting enough nutrition are likely to have an eating disorder." This explains so much about the way inpatients are being treated. Thanks @SockFoam for your informative video.

Katie Johnstone

@SockFoam

5 months

I did a presentation on BACME, the British Association of Clinicians in ME/CFS. BACME has great influence on the treatment of people with ME, yet they cling to outdated and harmful ideas.

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Julie Houston

@JulesAHouston

7 months

She also has has a new doctor whose partner has M.E so he is being very understanding & helpful. Maria had several visits from her family last week, including her grandchildren which was lovely for her & helped to lift her spirits. Maria has the gastric emptying test tomorrow. /3

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Julie Houston

@JulesAHouston

7 months

'I have had to watch my sister keep declining daily as she is put through many interactions we believe are not in keeping with the ME/CFS guidelines." #EndMalnutritioninME #VerySevereME #DontLetMeDie #MedicalNeglect #MedicalAbuse @MrTopple @gmcuk @NICEComms

Severe ME patient Millie's family tells the Canary the situation is 'heartbreaking'

Millie's family has told the Canary they're concerned she is "declining daily" - and that the situation with her severe ME is "heartbreaking"

www.thecanary.co

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Julie Houston

@JulesAHouston

7 months

Royal Lancaster Infirmary this young woman is at serious risk of harm or death due to the failings in the care you are providing. The situation is now grave. It is essential that she receives the appropriate feeding tube without delay. @aaroncumminsNHS

Sign the Petition

Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

www.change.org

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Julie Houston

@JulesAHouston

7 months

Call to action #ChronicIllness community! There are currently several patients in hospital in the UK at risk of severe harm & even death, because there's no NHS Protocol in place to treat them. Whatever illness you have please sign & share widely. #NEISvoid

Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.) - M.E....

Add your name:

organise.network

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Julie Houston

@JulesAHouston

3 years

A question for you all this #MEAwarenessHour . Can you still remember what 'normal' feels like? No pain, no cognitive issues, no limits on what you can do, no PEM. Can you remember waking up feeling rested, having energy, feeling healthy, feeling alive? #pwME #NEISvoid #LongCovid

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Julie Houston

@JulesAHouston

7 months

She's expecting that she will feel worse tomorrow. Really hoping the crash doesn't last too long. What a lot she's endured since she was admitted. Now she awaits the results. Details will be posted soon if you would like to send a card of support of Maria. #pwME

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Julie Houston

@JulesAHouston

7 months

"In 2021, 27 year-old Maeve Boothby O’Neill died after she became too unwell to take in food & water due to the severity of her ME. She was discharged three times when an NHS hospital allegedly mishandled her care and she died at home in Exeter." #MEKills

'A Rollercoaster Of Awful Emotions': Family Speaks Out for NHS Overhaul to Prevent Deaths of...

Millie McAinsh's family sought help when the M.E sufferer could no longer eat - only for her to to be sectioned.

bylinetimes.com

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Julie Houston

@JulesAHouston

6 months

Great to see @MEAssociation promoting this open letter by @MEFoggyDog . What is happening to #SevereME patients in hospital is horrifying. Can we please see a more collaborative approach with both main charities and our trusted advocates going forward. #NHSProtocol4SevereMENow

ME Association

@MEAssociation

6 months

OPEN LETTER: Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.) If you'd like to read and sign this open letter, you can do so here: #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #NICEguideline

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Julie Houston

@JulesAHouston

7 months

I've been blown away by Maria's strength & resilience. She has somehow managed to hold it together remarkably well in the face of an extremely challenging and difficult situation. Sending her more love, strength & support to top up what must be ever diminishing reserves. /End

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Julie Houston

@JulesAHouston

7 months

Despite crashing Maria has managed to send out some messages. The gastric emptying test results were within 'normal range'. She's not tolerating the full feed now & has had to ask them to stop a few times, which is very concerning. There will be a MDT meeting on 15th March. /1

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Julie Houston

@JulesAHouston

2 years

There is nothing I can say that hasn't been said a thousand times before. 24 years. Nothing changes. Scunnered! #MEAwarenessDay2022

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