@TheChronicCollaboration @TheChronicColab Twitter profile

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@TheChronicCollaboration

15 days

We were proud to support @Dis_PPL_Protest and others today at parliament for the #DisabledPeopleDemand - calling on the new Labour government to right so many historical wrongs. Here's our founder @NicolaCJeffery speech. Transcript below 👇

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@TheChronicCollaboration

@TheChronicColab

1 year

Eliana (16 years old) Covid Pneumonia Sept 2021. Diagnosed with ME September 2022. Bedbound. Not yet able to even watch TV, listen to music or engage in conversation with the people she loves. Struggling to keep down even ‘safe foods’. Missing out on so very much #DontLetMEDie

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@TheChronicCollaboration

@TheChronicColab

1 year

This is why we're protesting at parliament. Louise is currently extremely sick in an NHS hospital. Doctors are trying to psychologise her ME & other conditions On the left is Louise in 2021. On the right, is Louise NOW. Try telling us that's 'all in her head' #DontLetMEDie #PMQs

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@TheChronicCollaboration

@TheChronicColab

3 months

DON'T. LOOK. AWAY. #SaveCarlasLife #MEAwarenessHour Please meet Pierre, Carla's father. We cannot overstate how distraught he is by what is happening to his daughter. However, he wanted to speak to everyone directly. Please watch & share widely. She is running out of time 💚

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@TheChronicCollaboration

@TheChronicColab

4 months

URGENT #BringMillieHome At the request of Millie's family, we're holding a Twitterstorm at 11am on Tues 9 April to make some major noise. This MUST TREND. Please get involved then using #BringMillieHome AND #DontLetMEDie . Share articles. Share the petition. Tag the NHS Trust.

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@TheChronicCollaboration

@TheChronicColab

1 year

I’ve had severe ME for 17 years & have had so many experiences of neglect and abuse in hospitals that I now have a PTSD diagnosis. I don’t know anyone in the severe ME community who doesn’t also have similar horror stories to tell. It’s about time something was done #DontLetMEDie

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@TheChronicCollaboration

@TheChronicColab

4 months

UPDATE 6pm 18/4 #SaveCarlasLife : Thanks to YOU - yes, ALL of YOU - Carla's dad has been able to block the door window off AND neurology will be seeing Carla first thing tomorrow. This is thanks to the community's action. Not us, not a charity - YOU. Remember that #ExposeMENow

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@TheChronicCollaboration

@TheChronicColab

4 months

CW: distressing We want you to meet Carla #SaveCarlasLife #ExposeMENow With family's permission we're sharing some videos of her experience in West Middlesex hospital. This first video is what happens when she is exposed to bright light. Staff won't cover the door window.

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@TheChronicCollaboration

@TheChronicColab

4 months

Thank you so much to everyone who supported us online today - trending at number two is remarkable. Lucy and Abbie send their love and we'll update you on any developments throughout the day #BringMillieHome #DontLetMEDie We're off to get warm now

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@TheChronicCollaboration

@TheChronicColab

2 months

We have an announcement. We're upset, sad, sorry, exhausted, and devastated. But there's nothing we can do. Please watch and feel free to comment #ChronicIllness #MEcfs #LongCovid

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@TheChronicCollaboration

@TheChronicColab

4 months

As of 2pm on 16 April, Carla was unconscious for 24 hours. Yet doctors have done nothing. They don't believe she is having seizures. They have not got other specialisms such as neurology or cardiology involved #SaveCarlasLife #ExposeMENow Full story below:

The family of ANOTHER young woman with very severe ME are scared their daughter is going to DIE in...

After public outcry & media coverage over #BringMillieHome, the NHS is now abusing another young woman, Carla, who lives with severe ME

www.thecanary.co

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@TheChronicCollaboration

@TheChronicColab

3 years

We at @TheChronicColab are OVERWHELMED with the amount of online support & interactions that the #ProtestNICE4ME demo received. We really are humbled. Thank you so much to the #pwME who came out in person & virtually. Wow 🥺 It's amazing. And @NICEComms : #PublishThatGuideline .

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@TheChronicCollaboration

@TheChronicColab

23 days

It has taken since May to get this sorted & needed a lot of back & forth, but here's a BBC article on #SaveCarlasLife Her story & interviews with Pierre & Caroline will be on BBC London tonight as well from 6:30. Watch on iPlayer #MEcfs @WestMidHospital

Father of woman with ME/CFS scared she will "die in hospital"

Carla Naoum's father is unhappy with care she is receiving at West Middlesex University Hospital.

www.bbc.co.uk

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@TheChronicCollaboration

@TheChronicColab

5 months

Here's what people will be hearing around Westminster today, thanks to @LCMEBillboards Digivan that is currently circling around DWP, parliament and SW1 generally! #LongCovidAwarenessDay

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@TheChronicCollaboration

@TheChronicColab

4 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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@TheChronicCollaboration

@TheChronicColab

4 months

Finally, we spoke for an hour today with the father of a young woman called Carla: currently living with #SevereME that an NHS hospital is ignoring. She is extremely unwell repeatedly losing consciousness, unable to eat, yet the hospital is refusing to follow #MEAwarenessHour 1/2

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@TheChronicCollaboration

@TheChronicColab

4 months

We need to share this as widely as possible #SaveCarlasLife Carla has now been having seizure-like events for over FIVE DAYS yet @WestMidHospital has STILL not sent a neurologist to see her, as of 10am today. She had NEVER had them before being admitted there #ExposeMENow WATCH

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@TheChronicCollaboration

@TheChronicColab

3 months

#SaveCarlasLife Late on Saturday we met with @SeemaMalhotra1 Carla's MP at West Middlesex hospital. She visited Carla, spoke at length with us, Pierre & Caroline about the situation & has written to the hospital CEO expressing her concern. Please thank Seema for her support 💚

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@TheChronicCollaboration

@TheChronicColab

4 months

Live from outside the Royal Lancaster Infirmary for Millie #BringMillieHome #DontLetMEDie

@TheChronicCollaboration - @TheChronicColab

Live from outside the Royal Lancaster Infirmary for Millie #BringMillieHome #DontLetMEDie

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@TheChronicCollaboration

@TheChronicColab

1 year

Thank you so much to everyone online and in person who supported our #DontLetMEDie protest today. It was freezing and wet, but we were determined to show the strength of feeling in the chronic illness community. We hope we conveyed that 💚

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@TheChronicCollaboration

@TheChronicColab

3 years

Live streaming outside NICE #ProtestNICE4ME #PublishThatGuideline

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@TheChronicCollaboration

@TheChronicColab

3 months

We don't know what would have happened if we hadn't got involved tonight - and the Chronic Collaboration is just two people from a council house in south London. This is insane #SaveCarlasLife #ExposeMENow

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@TheChronicCollaboration

@TheChronicColab

4 months

PROTEST #SaveCarlasLife #ExposeMENow Carla is extremely ill in West Middlesex Hospital. Doctors are ignoring NICE guidance on severe ME & ignoring her severe POTS You know what to do THURS 18 APRIL 11am-1pm BST EVERYONE ONLINE USE THE HASHTAGS We'll be at the hospital too 1/

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@TheChronicCollaboration

@TheChronicColab

1 year

#DontLetMEDie live at parliament

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@TheChronicCollaboration

@TheChronicColab

3 months

Update on #SaveCarlasLife #MEAwarenessHour we know we've been quiet but there has actually been a lot going on. What has gone on is damning for the NHS. Watch/share 👇👇👇

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@TheChronicCollaboration

@TheChronicColab

3 years

The chronic collaboration has been created in response to the recent refusal of NICE to publish the much awaited ME/CFS guideline. Many #pwME would like to protest this decision along with the years of medical neglect & mistreatment they have faced 1/5

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@TheChronicCollaboration

@TheChronicColab

5 months

In an unusual turn of events, instead of threatening to arrest @NicolaCJeffery this police officer is asking questions about #LongCovidAwarenessDay 😅 @LCMEBillboards @paulapeters2

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@TheChronicCollaboration

@TheChronicColab

3 months

We're outside @BBCNews for #WorldMEDay asking them to improve their coverage of #MEcfs & #LongCovid . Get involved. Tell the BBC to #ExposeMENow #ExposeLongCovidNow

@TheChronicCollaboration - @TheChronicColab

We're outside @BBCNews for #WorldMEDay asking them to improve their coverage of #MEcfs & #LongCovid. Get involved. Tell the BBC to #ExposeMENow #ExposeLongCovidNow

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@TheChronicCollaboration

@TheChronicColab

4 months

2/2 NICE guide on #SevereME saying "they don't apply at this hospital". Dr Weir has assisted, & we've been liaising #MEAwarenessHour Point being we're going to see the family in a day or two, & then do another #BringMillieHome #ExposeMENow . But we'll need YOU to get involved.

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@TheChronicCollaboration

@TheChronicColab

2 months

#SaveCarlasLife Don't. Look. Away. Carla's father Pierre recorded this video late on Friday 24 May for you all to hear. What has happened to them has happened to #BringMillieHome has happened to Karen Gordon. Except we are documenting it in real time #ExposeMENow Watch & share

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@TheChronicCollaboration

@TheChronicColab

3 months

WESTMINSTER HALL DEBATE ON #MEcfs As promised please find below an open letter everyone can sign asking @sajidjavid to raise #BringMillieHome #SaveCarlasLife & more during 1 May's debate We will send it on 30 April. So get involved and get signing. LINK with a CW - suicide:

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@TheChronicCollaboration

@TheChronicColab

3 months

We should add that after the SpO2 reading dropped to 71% (even though the nurse said Carla was 'deliberately' making noises like she was struggling to breathe) the hospital then removed the obvs machine entirely #SaveCarlasLife

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@TheChronicCollaboration

@TheChronicColab

5 months

And... It's a wrap from us. Thank you so much to everyone that came to support @LCMEBillboards #LongCovidAwarenessDay action in Westminster today. We gave out thousands of leaflets, got a trending hashtag, & SW1 heard & saw just how horrendous long Covid is. Great team work 💚

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@TheChronicCollaboration

@TheChronicColab

4 months

Well as if yesterday wasn't enough Twitter has now turned #BringMillieHome #DontLetMEDie into a news topic on its 'explore' function: a brief overview & then a selection of all our tweets. For the first time we may have something to thank @elonmusk for 😱

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@TheChronicCollaboration

@TheChronicColab

11 days

#SaveCarlasLife As the inquest into #MaeveBoothby O'Neill who died of very severe #MEcfs begins, Carla's father Pierre wishes to share an update. She is currently being mistreated in West Middlesex NHS hospital. There are worrying echoes here as with others. Nothing changes.

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@TheChronicCollaboration

@TheChronicColab

3 years

OH & we cannot BELIEVE you wonderful people made #ProtestNICE4ME trend at # FIVE! We realised we need a social media co-ordinator during protests! It's amazing that our community managed to achieve this from literally all working together. Brilliant. HT @PhoebsBo for the image 💚

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@TheChronicCollaboration

@TheChronicColab

2 months

We have an update on #SaveCarlasLife : This is so important. We all know this goes on, but what we don't always have is access to be able to document it in real time. Don't look away. This is happening right now, and we know it's happened to many of you #ExposeMENow 👇

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@TheChronicCollaboration

@TheChronicColab

3 years

We’re protesting outside NICE HQ for Merryn. #ProtestNICE4ME . Sick with ME. She cannot protest. Because Merryn died on 23rd May 2017. Do you see her @NICEComms ? If so - #PublishThatGuideline NOW.

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@TheChronicCollaboration

@TheChronicColab

3 months

OK so we have a critical update on #SaveCarlasLife #ExposeMENow . We are watching the NHS kill a very severe ME patient in real time and we have literally been trying every possible route out of this 👇

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@TheChronicCollaboration

@TheChronicColab

5 months

Hmm... The DWP are already trying to tell us we can't take photos of the building... Yeah we don't think so... #LongCovidAwarenessDay @LCMEBillboards @long_covid @Dis_PPL_Protest @paulapeters2 @NicolaCJeffery

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@TheChronicCollaboration

@TheChronicColab

4 months

This brilliant article from @TinyWriterLaura in @BylineTimes is another superb example of the good work journalists can do. It gives a voice to Millie's family when so many are ignoring them. Please read & share & we must #BringMillieHome #DontLetMEDie

'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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@TheChronicCollaboration

@TheChronicColab

3 months

We have had several long conversations with Pierre today #SaveCarlasLife including one just now, which was quite distressing. The situation is becoming intolerable for her and the family. We will have some major updates in the morning so please keep an eye on our social media.

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@TheChronicCollaboration

@TheChronicColab

1 year

We've organised an emergency demo at parliament on 8 March. Too many people with severe ME are dying. The NHS fails too many people with ME. Politicians must act NOW before anyone else comes to harm & before #LongCovid patients are next. Please support #MEAwarenessHour #NEISvoid

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@TheChronicCollaboration

@TheChronicColab

1 year

Eva Lehmann is my name I can no longer speak or be spoken too. I live in isolation always alone. Thank you ❤️ #DontLetMEDie

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@TheChronicCollaboration

@TheChronicColab

3 months

The first part of our #MEAwarenessDay #WorldMEDay direct action has arrived. Thanks so much to @LCMEBillboards for sponsoring our banners. Making sure #pwME who cannot physically protest are visibly there has always been a priority. There will also be a #LongCovid patient banner.

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@TheChronicCollaboration

@TheChronicColab

4 months

UPDATE on Carla who lives with #SevereME and is currently in an NHS hospital where liaison psychiatrists have taken over her case and are ignoring her other consultants and Dr Weir #DontLetMEDie echoes of #BringMillieHome , predictability. Please watch and share 👇

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@TheChronicCollaboration

@TheChronicColab

1 year

We want to reaffirm what we said at yesterday's #DontLetMEDie protest If there's anyone living with #MEcfs #EhlersDanlosSyndrome & they're in an NHS hospital being maltreated like Alice, Sami & Louise please reach out to us. We can as a minimum amplify your voice #ChronicIllness

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@TheChronicCollaboration

@TheChronicColab

4 months

We have one slight update to this #BringMillieHome #DontLetMEDie Can we ask that people tag the @gmcuk @RCPhysicians @rcpsych , media outlets, and politicians tomorrow - NOT the NHS trust/hospital. This is at the request of Millie's family. Thank you.

@TheChronicCollaboration

@TheChronicColab

4 months

URGENT #BringMillieHome At the request of Millie's family, we're holding a Twitterstorm at 11am on Tues 9 April to make some major noise. This MUST TREND. Please get involved then using #BringMillieHome AND #DontLetMEDie . Share articles. Share the petition. Tag the NHS Trust.

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@TheChronicCollaboration

@TheChronicColab

1 year

I’m 18 and have lived with ME since 2017 when I was 13. I have been 100% bedridden for 2.5 years, unable to walk and dependent on full time care. Made significantly worse by the NHS time and time again during months long stays in hospital and at home #DontLetMEDie

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@TheChronicCollaboration

@TheChronicColab

4 months

This article from @MrTopple at @TheCanaryUK was the first to highlight Millie's dire and dangerous situation, giving context around what she's experiencing and when and why we've been here before. Please do share and #BringMillieHome #DontLetMEDie

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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@TheChronicCollaboration

@TheChronicColab

16 days

We're on our way to Parliament Square to join @Dis_PPL_Protest @WinVisibleWomen & others for the #DisabledPeopleDemand action - calling on the new Labour government to right so many years of wrongs against chronically ill & disabled people. Get involved using the hashtag 💚

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@TheChronicCollaboration

@TheChronicColab

6 months

We're pleased to say that Ofcom has now received nearly 450 (FOUR HUNDRED & FIFTY) complaints over the Acu Seeds/Dragon's Den scandal #DragonsDenConnedME . This is huge. So, well done to the entire #MEcfs & #ChronicIllness communities. This is your work.

Acu Seeds has devastated chronically ill people. Ofcom must now hold the BBC to account.

You cannot have missed the storm over the Acu Seeds product that appeared on Dragon's Den. Now, you can complain to Ofcom.

www.thecanary.co

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@TheChronicCollaboration

@TheChronicColab

4 months

UPDATE on Carla. We spoke with the family, supporting them writing a letter to PALS making a formal complaint. The psychiatrist 'treating' Carla was linked to PACE trial crew & involved in the inception of the disastrous 'liaison psychiatry' model #BringMillieHome #DontLetMEDie

@TheChronicCollaboration

@TheChronicColab

4 months

Finally, we spoke for an hour today with the father of a young woman called Carla: currently living with #SevereME that an NHS hospital is ignoring. She is extremely unwell repeatedly losing consciousness, unable to eat, yet the hospital is refusing to follow #MEAwarenessHour 1/2

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@TheChronicCollaboration

@TheChronicColab

3 months

ANNOUNCEMENT: We're aware and welcome the Westminster Hall debate on #MEcfs that @sajidjavid will be leading. We're also aware that #pwME feel strongly that the current situations with #BringMillieHome #SaveCarlasLife & Karen are represented. So, we're drafting an open

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@TheChronicCollaboration

@TheChronicColab

3 months

UPDATE: #SaveCarlasLife - it seems the hospital are finally doing something positive - but still not quite enough - plus #BringMillieHome FYI transcript of the video in reply below:

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@TheChronicCollaboration

@TheChronicColab

16 days

Happening right now outside parliament!!! #DisabledPeopleDemand

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@TheChronicCollaboration

@TheChronicColab

3 months

We should add @SeemaMalhotra1 was also very concerned about the national picture for #MEcfs #SevereME patients - again, which we really appreciate. We spoke at length to her afterwards about this, and will be arranging a meeting to brief her further ASAP #SaveCarlasLife . TY Seema

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@TheChronicCollaboration

@TheChronicColab

5 months

And... we're here for #LongCovidAwarenessDay with @LCMEBillboards @long_covid .

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@TheChronicCollaboration

@TheChronicColab

3 years

We've a #MEAwarenessHour announcement: The details of our demo over NICE delaying the new #MEcfs guidelines are below. We understand not all #pwME can make it. So check out how YOU can virtually be there. Please share widely #ProtestNICE4ME #PublishThatGuideline #ChronicIllness

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@TheChronicCollaboration

@TheChronicColab

4 months

This is unbelievable. #BringMillieHome and #DontLetMEDie are already trending at number THREE please keep going Millies mum and sister are so pleased 💖

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@TheChronicCollaboration

@TheChronicColab

3 months

Update #SaveCarlasLife in what world should me and her mum be doing her obs???

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@TheChronicCollaboration

@TheChronicColab

2 months

Just to make it very clear, as we said in our video on Monday, we are still supporting Carla and Millie as we have been - nothing has changed in that respect - and we'll still be providing updates as and when things happen.

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@TheChronicCollaboration

@TheChronicColab

3 months

"We win this time" - UPDATE on #SaveCarlasLife it's amazing what happens when you have a prominent barrister on speed dial... #ExposeMENow

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@TheChronicCollaboration

@TheChronicColab

3 months

We're live from @guardian asking them to STOP their appalling coverage of #MEcfs and START listening to patients and advocates. On #WorldMEDay please #ExposeMENow #ExposeLongCovidNow @guardiannews

@TheChronicCollaboration - @TheChronicColab

We're live from @guardian asking them to STOP their appalling coverage of #MEcfs and START listening to patients and advocates. On #WorldMEDay please #ExposeMENow #ExposeLongCovidNow @guardiannews

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@TheChronicCollaboration

@TheChronicColab

25 days

#SaveCarlasLife Pierre, Carla's father, wanted to share an update with you. A lot has happened in the past few weeks and we have still been supporting them, including attending a large MDT with the hospital - to no avail. More updates will follow #MEcfs

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@TheChronicCollaboration

@TheChronicColab

4 months

A quick message from our founder @NicolaCJeffery who (no disrespects Lancashire), is pleased to be back home. It's just so sad someone else isn't home with their family... yet... #BringMillieHome #DontLetMEDie

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@TheChronicCollaboration

@TheChronicColab

4 months

As if by magic @AndyBonnerITV report from the #BringMIllieHome #DontLetMEDie protest is out now. We must thank @andrewriggers who was calling us 30 minutes after getting our press release yesterday to arrange this. Millie & her family really appreciate it

Family stage protest outside hospital over medical treatment of 18-year-old girl | ITV News

Millie has been at the hospital for 10 weeks, but her family say the only way her condition will improve is if they let her come home. | ITV News Granada

www.itv.com

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@TheChronicCollaboration

@TheChronicColab

3 months

We're going to be protesting outside numerous UK media offices for #WorldMEDay #MEAwarenessDay on Sunday 12 May - calling for them to report PROPERLY on both #MEcfs & #LongCovid . Can YOU join us for our livestream in London? We have a schedule here:

ME Awareness Day 2024: join us in person or online as we report live from outside the BBC, Guardi...

Campaign group the Chronic Collaboration will be turning the tables on the mainstream media, over its coverage of ME/CFS & long Covid

thechroniccollaboration.com

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@TheChronicCollaboration

@TheChronicColab

3 months

#SaveCarlasLife Carla's father, Pierre, has a lot he wants to tell you, and the world. We have more videos to come across the day tomorrow. But first this is the urgent situation Carla is in RIGHT NOW. This MINUTE. Let it be known for the record #ExposeMENow #LateNightLycett

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@TheChronicCollaboration

@TheChronicColab

3 months

Day three of @NicolaCJeffery 's #ZebraChallenge for #EDSAwarenessMonth & this is the reality of the illness: she's currently unwell in bed with a flare of dysphagia due to craniocervical/atlantoaxial instabilities. So, we want to introduce you to someone...

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@TheChronicCollaboration

@TheChronicColab

3 months

URGENT UPDATE #SaveCarlasLife Psychiatrists are some of the most narcissistic, toxic people going. It's all suddenly kicked off today #ExposeMENow WATCH:

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@TheChronicCollaboration

@TheChronicColab

3 months

Thanks to @LCMEBillboards we've #MEcfs info leaflets to hand out to journalists & media workers tomorrow for #WorldMEDay #MEAwarenessDay when we visit the BBC, ITV, C4, C5, Guardian, Times, Telegraph & more But we NEED some people with us. SCHEDULE HERE:

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@TheChronicCollaboration

@TheChronicColab

3 months

Just as an FYI - we haven't issued any updates about #SaveCarlasLife , not because we've been too busy with the website, or because Nicola's been unwell, but because there are things going on that are not finalised yet & it's in hers & her family's best interests that nothing is

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@TheChronicCollaboration

@TheChronicColab

3 months

ANNOUNCEMENT #BringMillieHome We want to give credit to @MEActNetUK & @meactionscot . We said on Friday that we had secured the question Cat Smith had asked in parliament over #MEcfs . It turns out that ME Actions were also working in the background, at the same time as us, on

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@TheChronicCollaboration

@TheChronicColab

4 months

NHS hospitals must stop abusing #SevereME patients. 18 year old Millie is deteriorating rapidly in hospital due to their continuous psychologising of her very severe ME #BringMillieHome #DontLetMEDie @gmcuk @rcphysicians @rcpsych @NHSuk

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@TheChronicColab

3 months

Looks like Twitter thinks the #MEcfs community's global open letter to @sajidjavid over his Westminster Hall debate is important enough to warrant a trending news item #BringMillieHome #SaveCarlasLife Sign it here:

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@TheChronicCollaboration

@TheChronicColab

4 months

#BringMillieHome #DontLetMEDie can we please STOP telling Millie's family to play nicely and not upset the hospital 🤬 are people fucking for real 🫠

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@TheChronicCollaboration

@TheChronicColab

3 months

Here's the problem with ME charities. Their view is that mobilising the community on a regular basis 'doesn't work' - despite NONE of these charities ever doing it before. Change is not won from the top down. Change is won from the bottom, up - with everyone involved #WorldMEDay

ME Foggy Dog 💙

@MEFoggyDog

3 months

@fionangreg @davro_t @cfs_jo @TheChronicColab This week a rep said this type of stuff doesn't work. That's why 🤷‍♀️

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@TheChronicCollaboration

@TheChronicColab

4 months

#SaveCarlasLife #ExposeMENow trying again

@TheChronicCollaboration - @TheChronicColab

#SaveCarlasLife #ExposeMENow trying again

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@TheChronicCollaboration

@TheChronicColab

3 months

We have an update on #SaveCarlasLife : the hospital are now persecuting Pierre and Caroline because staffs' scandalous behaviour has become an international story. This is the same behaviour we're seen with #BringMillieHome . However, we have bigger updates tomorrow #ExposeMENow :

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@TheChronicCollaboration

@TheChronicColab

3 months

OUR WEBSITE IS LIVE #MEAwarenessHour #TheChronicCollaboration We hope this moment will be the start of a sea change for #ChronicIllness communities. We're determined it will be. Please have a look at the website, support it if you can, & do share.

THE CHRONIC COLLABORATION

As the Canary published a scathing expose on ‘Lightning Process’, Google’s sponsored content machine was spluttering out ads plugging the trash programme.

thechroniccollaboration.com

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@TheChronicCollaboration

@TheChronicColab

1 year

We've got a remarkable 149 pictures of #pwME who wanted to be at tomorrow's #DontLetMEDie protest but are too sick to even consider making it. We will be showing each and every one on the livestream. Thank you SO much for the effort 💚 #MEcfs #LongCovid #ChronicIllness #Spoonies

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@TheChronicCollaboration

@TheChronicColab

3 months

We're off to our final destination on our mainstream media tour of London for #WorldMEDay asking them to #ExposeMENow . We're heading across the city to @Telegraph to ask why its coverage of #MEcfs & chronically ill and disabled people is so awful 🤔 going live at 3pm. Join us

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@TheChronicCollaboration

@TheChronicColab

4 months

#BringMillieHome We've just had a long conversation with Lucy & Abbie regarding the detail of the below update. To say we are disgusted would be an understatement. We've advised them what to do next & will be speaking to them again later today #DontLetMEDie We're not having it.

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@TheChronicCollaboration

@TheChronicColab

7 months

Sending love to all who got involved with #ExposeMENow tonight, calling on @ITV @BBC @Channel4 @channel5_tv & others @netflix to make a drama on the scandal of post-viral illness. We ended up trending at NUMBER 12. A huge thing given we organised this... yesterday evening... 😅

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@TheChronicCollaboration

@TheChronicColab

6 months

Still no apology, still no admission of wrongdoing - but the BBC has pulled the Acu Seeds episode of #DragonsDen from iPlayer while it "reviews it"... #DragonsDenConnedME . How do we feel about this?

BBC pull Dragons' Den from iPlayer over 'serious concerns' after Mirror story

The BBC have yanked Dragons' Den from iPlayer after concerns were raised after a guest showcased 'ear seeds' which allegedly helped 'cure' her ME

www.mirror.co.uk

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@TheChronicCollaboration

@TheChronicColab

4 months

WE CAN CHANGE THIS #MEcfs After #BringMillieHome , it seems that the sustained activity of us - but crucially YOU - has caught the attention of Twitter, because it has now run an 'Explore' news story on Carla & update on Millie #DontLetMEDie . Wow. READ:

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@TheChronicCollaboration

@TheChronicColab

3 months

TONIGHT 8PM: We're pleased to say we're launching our website during #MEAwarenessHour TONIGHT at 8pm. This is a project that everyone can be involved in - so we hope you'll be online later today for the launch #MEcfs #EDSAwarenessMonth #SaveCarlasLife

THE CHRONIC COLLABORATION

As the Canary published a scathing expose on ‘Lightning Process’, Google’s sponsored content machine was spluttering out ads plugging the trash programme.

thechroniccollaboration.com

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@TheChronicCollaboration

@TheChronicColab

4 months

#SaveCarlasLife #ExposeMENow live from West Middlesex hospital

@TheChronicCollaboration - @TheChronicColab

#SaveCarlasLife #ExposeMENow live from West Middlesex hospital

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@TheChronicCollaboration

@TheChronicColab

6 months

We managed to get @Ofcom to issue a statement!!! So far, it has received 339 complaint emails since 8pm last night over #DragonsDenConnedME & Acu Seeds appearance. This is amazing work everyone. It shows that when we all work together we can get people to pay attention #MEcfs

Canary

@TheCanaryUK

6 months

After @TheChronicColab 's #DragonsDenConnedME campaign last night, @Ofcom has contacted the Canary with the following update: "We are assessing the complaints received to determine whether the BBC should consider them first, under the BBC First arrangements. Our decision will not

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@TheChronicCollaboration

@TheChronicColab

4 months

This comprehensive article by @iEllieFry in the @DailyMirror is a brilliant evaluation of the situation Millie is in. Please do read this, as it shows just why we're doing what today and why we MUST #BringMillieHome #DontLetMEDie

'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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@TheChronicCollaboration

@TheChronicColab

2 months

It's been a busy week at the Collaboration. This video had already been recorded once, & then at 5:45pm on a Friday night things drastically change #SaveCarlasLife #BringMillieHome #ExposeMENow FYI we're NOT on purdah & nor are we too short staffed to function effectively 🙃

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@TheChronicCollaboration

@TheChronicColab

3 months

Steve is currently at West Middlesex Hospital speaking to Carla's family and will be giving a full update on Carla and her situation this evening. #SaveCarlasLife

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@TheChronicCollaboration

@TheChronicColab

3 months

Well, well, well... That BACME conference happening on 16 May? Thanks to a tip off @h_sharland dug into it for us & found there will be a talk from a PACE trial alumni on "adventure therapy" as a treatment for #MEcfs . No REALLY #MEAwarenessMonth Read:

A PACE trial author will push graded exercise therapy with a twist at BACME’s 2024 conference

Contentious BACME is hosting a conference on 16 May. So naturally, the psych lobby is taking the opportunity to peddle its latest gaslighting gimmick

thechroniccollaboration.com

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@TheChronicCollaboration

@TheChronicColab

5 months

Whoop whoop! Our friends at @LongCovidAdvoc are here 💚💚💚 #LongCovidAwarenessDay @LCMEBillboards

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@TheChronicCollaboration

@TheChronicColab

2 months

Update #SaveCarlasLife so her parents managed to convince her to have the cannula for the IV put back in, and then this happened late last night #ExposeMENow

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@TheChronicCollaboration

@TheChronicColab

4 months

We saw @GeorgeMonbiot 's calls for an ME Inquiry. This got @h_sharland thinking: who could possibly stand in the way? Well, there's one weasely person who could - & here, Hannah dissects his track record. Important read #BringMillieHome #DontLetMEDie :

An ME inquiry? Not likely when a pillar of the psychologising establishment has access to the halls...

People living with ME need an inquiry into the medical scandal and abuse they face on a daily basis - but Simon Wessely may stand in the way

www.thecanary.co

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@TheChronicCollaboration

@TheChronicColab

9 days

#SaveCarlasLife every day there is something else the West Middlesex hospital does to cause Carla further pain and anguish. Here is another update from her father Pierre #MaeveInquest #MEAwarenessHour #MEcfs 👇

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@TheChronicCollaboration

@TheChronicColab

3 years

We’re protesting outside NICE HQ for Anil #ProtestNICE4ME . Sick with ME. They cannot protest. Do you see them @NICEComms ? If so - #PublishThatGuideline NOW.

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@TheChronicCollaboration

@TheChronicColab

4 months

Imagine being so sick you can’t eat, going into hospital for a simple but lifesaving procedure, instead being held against your will, rapidly deteriorating to a point you feel like you’re going to die, from a condition Drs think is psychological #BringMillieHome #DontLetMEDie

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