Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿

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Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿 banner
Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿

Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿

@Klang764

M.E (not cfs) for 27 years. Mainly here for M.E advocacy,disability rights & Scottish independence.

Scotland Katılım Haziran 2009
1.6K Takip Edilen1.4K Takipçiler
Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿 retweetledi
Katy B
Katy B@KatyBruce108·
We really need powerful advocates who are willing to state publicly, in the strongest possible terms, how devastating the decisions which were made by those in power have been on #pwME & how this continues to this day. This messaging👇from MEA isn't enough, it never was.
Adam@ABrokenBattery

Dr Charles Shepherd (@MEAssociation) explains how in the 80s and 90s psychiatrists claimed #MECFS was due to “deconditioning” and “abnormal illness beliefs”. Graded exercise therapy made many patients worse, with some ending up in wheelchairs. It was only removed by NICE in 2021.

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Jo
Jo@cfs_jo·
@TinyWriterLaura *Laura setting up a plot line to explain her frequent visits to Bargain Booze shop
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Laura Elliott
Laura Elliott@TinyWriterLaura·
UPS ‘we tried to deliver your parcel today but couldn’t without a signature, therefore we’ve dropped it off at a bargain booze (?!?!) collection point miles away’ well that’s funny because i work from home & have a clear view of the road and no one even drove up here you pricks
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Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿 retweetledi
Katy B
Katy B@KatyBruce108·
Thank you so much @johnthejack for sharing so openly & with such courage, the reality of living with #ME All of this suffering of #pwME could have been avoided & yet successive governments & @NHSuk remain unwilling to do what's necessary to end it. #MEAwareness #MedTwitter
Adam@ABrokenBattery

Powerful clip @johnthejack on the BPS model for #MECFS It meant he was “an unreliable witness” to his own body, he could get better if he just changed his thinking and his behaviour. People viewed him differently and the responsibility to recover was put onto him.

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Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿 retweetledi
xxx ROSE xxx
xxx ROSE xxx@TanteRos·
I often think Dr Shepherd tries to sidestep any question about how the BPS brigade so damaged #pwME. He doesn't like to rock the boat. In this clip he does speak out. I'd be very glad to have that BPS boat rocked so hard it capsized & sunk for ever more.
Adam@ABrokenBattery

Dr Charles Shepherd (@MEAssociation) explains how in the 80s and 90s psychiatrists claimed #MECFS was due to “deconditioning” and “abnormal illness beliefs”. Graded exercise therapy made many patients worse, with some ending up in wheelchairs. It was only removed by NICE in 2021.

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Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿
@CaroleBruce17 @TheOldLostRoad What world is CS living in that he thinks *anything* has changed? (Eg. I was recently told by a doc that praying would help my ME ffs)Beyond infuriating 😡 imho MEA needs to be disbanded,they've repeatedly evidenced that they simply aren't up to the task of bringing about change.
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Carole Bruce
Carole Bruce@CaroleBruce17·
A good start by Dr Shepherd in his interview but:- a) ending up in wheelchairs downplays the fact that people have died from this PACE advice b) NICE guidelines changed but the implementation of them remains very sketchy to say the least. Fact is chances of recovery very slim
Adam@ABrokenBattery

Dr Charles Shepherd (@MEAssociation) explains how in the 80s and 90s psychiatrists claimed #MECFS was due to “deconditioning” and “abnormal illness beliefs”. Graded exercise therapy made many patients worse, with some ending up in wheelchairs. It was only removed by NICE in 2021.

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Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿 retweetledi
🕸️Dr.T, PhD
🕸️Dr.T, PhD@chydorina·
We need a MECFS organization that is actually an acute-care research hospital. A place where there are doctors and nurses and associated medically trained staff. Patients would be airlifted there and cared for through the 'very-severe' stages. Once survival would be possible back at home - with proper ongoing distance care - they would be discharged. It would double as an 'extreme cases' MECFS research center - and it is from these extreme cases where the biggest breakthroughs will be made. Personally when I think of what type of advocacy organization I would want to financially support - this is what it would be. I believe many of the people that have decided to die (or those that died in regular hospitals from mistreatment) would not have if a place like this was available. If I was not sick myself this is what I would start. An actual global medical/research facility for the most severe cases.
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Katy B
Katy B@KatyBruce108·
I dont normally share personal news here but Chime was one of my very dearest friends for over 3 decades, his death is a huge loss His support & kindness were unwavering & unmatched in my life & he was so angry at the suffering & injustice which had been inflicted on every #pwME
David Bowie Official@DavidBowieReal

FAREWELL TO CHIME RINPOCHE “Child of Tibet, you’re a gift from the sun…” Sad to learn of the passing of Lama Tulku Chime Rinpoche, who died yesterday at 85 years old. Tony Visconti had this to say of his and David’s mutual friend... + - + - + - + - + - + - + - + - + - + - + - + - + “I just received news that my meditation teacher, Lama Tulku Chime Rinpoche, passed today at 85 years old. He was introduced to me by David Bowie when we were very earnest about Tibetan Buddhism. In David's song "Silly Boy Blue" David incants Chime's name several times. Chime was born in Kham, Tibet, in 1941. He is a Tulku High Lama, meaning he is able to consciously reincarnate. I have so many good stories to tell about him.” + - + - + - + - + - + - + - + - + - + - + - + - + And here’s a bit from Chime himself following David’s passing in 2016... + - + - + - + - + - + - + - + - + - + - + - + - + “This morning I heard the news that David Bowie passed away…I cannot express the words, I am so sad…” + - + - + - + - + - + - + - + - + - + - + - + - + Over the years David and Chime would occasionally meet and talk on the phone. His main contact was through Tony Visconti, who had been a student of Chime’s since 1969. In a February 1966 interview, Bowie told Melody Maker: “I want to go to Tibet. It’s a fascinating place, y’know. I’d like to take a holiday and have a look inside the monasteries. The Tibetan monks, Lamas, bury themselves inside mountains for weeks, and only eat every three days. They’re ridiculous—and it’s said they live for centuries…As far as I’m concerned the whole idea of Western life—that’s the life we live now—is wrong. These are hard convictions to put into songs, though.” Read more about Chime Rinpoche via this superb in-depth article by Mick Brown: bit.ly/3Psw5Da Condolences to Tony Visconti and Chime’s friends and family. 📸 Chime Rinpoche by Anna Huix - David Bowie at the 2001 Tibet House show at New York’s Carnegie Hall by Kevin Mazur. FOOTNOTE: The Chime, Chime, Chime, chant that Tony recalls isn’t actually a part of the original release of Silly Boy Blue, but it is in the 1968 BBC radio version and the 2001 live and studio versions. The so called ‘Tibet Version’ of Silly Boy Blue was recorded at The Looking Glass Studio at the time of the 2001 Tibet House show in New York. You can listen to it here and read the impressive line-up for the recording: youtube.com/watch?v=jCcBcz… #RIPChimeRinpoche #BowieChime #BowieTibet

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Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿 retweetledi
#ThereForME
#ThereForME@ThereForME_UK·
The patients who will suffer are some of the most vulnerable in society. They are facing yet another year without NHS care. We're committed to advocating on their behalf - and we are very clear that this is not good enough. cc @SharonHodgsonMP @wesstreeting (3/3)
#ThereForME tweet media
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Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿 retweetledi
Carole Bruce
Carole Bruce@CaroleBruce17·
This is absolutely heartbreaking for anyone with #ME or those who care about us. Friends have died or taken their own lives, very few of us can do any sort of work let alone any social activity We are often living in situations unsuitable for the severely ill. We don’t feel safe
#ThereForME@ThereForME_UK

This week we were informed by DHSC, alongside other organisations, that DHSC and NHS England have delayed discussions on commissioning a specialised service for very severe ME until April 2027. This means yet another year without NHS care for people with very severe ME. (1/3)

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Sonic Death Monkey
Sonic Death Monkey@Parkesy1701·
@CaroleBruce17 @Klang764 Honestly feels like the so called delivery plan was just a sop that meant they could say they’ve ’done’ #ME for another decade or so and go back to ignoring it.
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Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿 retweetledi
Carole Bruce
Carole Bruce@CaroleBruce17·
One might say “what action” to provide a specialist service for very severe #ME as it was not ever discernible that anything was happening at all. So once again those too ill to advocate for themselves are simply left to rot with no specialists and no service. National scandal 💔
#MEAction Network UK@MEActNetUK

The @DHSCgovuk have paused action on commissioning a specialised service for very severe ME/CFS until April 2027 at earliest. This isn’t acceptable @wesstreeting! Sign up for our mailing list meaction.org.uk/sign-up for more news. #MyalgicEncephalomyelitis #VerySevereME

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Lizzy H
Lizzy H@hopefullizzy·
As a couple of you know, I’m back in hospital. Have been here a week, some incredibly poorly moments where mum stayed with me overnight. Stabilised a little. Back in my usual room, usual ward (thankfully because although the staff on AMU were brilliant, being in a bay was hard)
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Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿 retweetledi
Carole Bruce
Carole Bruce@CaroleBruce17·
Nearly 400,000 people are estimated to have #MEcfs in the UK. A very large proportion are unable to work, are housebound or bedbound. There are no specialists, not one that GPs can refer to and no specialist services. This is an economic and humanitarian scandal. Do something!
Wes Streeting@wesstreeting

About to give a speech on the NHS: Change We Can Believe In. An account of the progress we’ve made so far and what we plan to do next. Grounds for optimism, not cause for complacency. Lots done. So much more to do.

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Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿 retweetledi
Katy B
Katy B@KatyBruce108·
@wesstreeting by backing down on your promise to set up a service for patients with very severe #ME you are continuing to put #pwME at serious risk of death There must be a rapid setting up of interim home-IV & parenteral nutrition protocols to prevent further deaths from #MEcfs
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Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿 retweetledi
Katy B
Katy B@KatyBruce108·
We can add to this📄 'The @DHSCgovuk have announced that they have paused action on commissioning a specialised service for very severe #ME until April 2027 at the earliest' Which #ME org will be holding the DHSC to account, as the lives of #pwME are placed at further risk❓
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Kags ❇ 😷 #pwME 🏴󠁧󠁢󠁳󠁣󠁴󠁿 retweetledi
Dan Wyke 🦠➡️🧠🔥
When a coroner warns @wesstreeting "there will be further deaths from ME unless action is taken" one expects the Health Secretary to take action. If more deaths occur, and the minister hasn't done so, he deserves to be charged with gross negligence. bbc.co.uk/news/articles/…
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