Madeleine ThriftVIP®

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Madeleine ThriftVIP®

Madeleine ThriftVIP®

@ThriftVIP

Evolving ThriftVIP #Dissabled #MEFibro ☆Unique.Eclectic☆Style #pwME 30yrs #LC ‘a luta continua’ - the struggle continues #ND Opinions my own #TryingToThrive

United Kingdom Katılım Haziran 2013
1.6K Takip Edilen542 Takipçiler
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Karl McNamara
Karl McNamara@Carlrun7·
@doctor_katie @jamesmurray_ldn @BMA_GP I here address @jamesmurray_ldn with the same promise I gave @wesstreeting that if any PRIVATE MEDICAL INFORMATION from my family is passed into the hands of Palantir, without our permission, we will immediately start legal action against those responsible. You have been warned!
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Swiftsandswallows
Swiftsandswallows@Swiftsswallows·
My daughter Isla suffered so much, ill with ME from age 6, told to push through the pain to get better, years of deterioration and disbelief. Involvement of Social Services because of concerns of Fabricated Illness and later her MCAS symptoms put down to anxiety. She died in May
#MEAction Scotland@meactionscot

CONTENT WARNING Isla was only 18 years old when she died in May. She had been ill with ME since 6, later with POTS & MCAS. Her family say she faced disbelief & neglect from many professionals. Things have to change for ME patients #VerySevereME #POTS #MCAS Andrew Gwynne MP

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Madeleine ThriftVIP®
Madeleine ThriftVIP®@ThriftVIP·
Image description: (forgot alt text):The image shows a photo of a TV screen with a blue background with text over in blue and white that reads: ‘Blue Sunday (above) the online concert for M.E.’ (below). There are tiny thumbnail images behind the main background above &below text
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ME Foggy Dog
ME Foggy Dog@MEFoggyDog·
Off to see my MP in a bit. Topic- Categorisation of M.E by various UK Govt depts (MoJ and DWP in particular). I want to discuss available options 🤷‍♀️ I have 15 minutes with my MP.... with brain fog. *Foggy* Think positive Sally, think positive! (It's been a long week!) #pwME
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Madeleine ThriftVIP®
Madeleine ThriftVIP®@ThriftVIP·
@Naomi_D_Harvey Thank you. The last thing I tried was AUTOGENIC training in 2022/3 still under the same hospital in London via Dr Meyer referral but done remotely - still under behavioural medicine though ! Dr still doesn’t understand M.E. writing unhelpful & insulting letters etc as follow ups
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Naomi Harvey “PhD Witch” #WearAMask
Recommending “sleep hygiene” to pwME for our sleep problems has never been anything more than insulting imo. It’s as bad as telling someone with severe chronic pain to try paracetamol, if not worse.
MBwLCME@marinaflares

Finally, someone did what I said to my sleep specialist 4 years ago, should be done (the one who dismissed me and my data and recommended CBTi). And, surprise, they find that poor sleep in ME must be due to physiology, not bad "sleep hygiene". link.springer.com/article/10.100…

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Adam
Adam@ABrokenBattery·
Sleep hygiene can be just as “damaging as graded exercise” for patients with #MECFS Dr Nigel Speight describes a girl with severe sleep reversal. She walked into hospital and was carried out a month later needing to be tube fed.
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peaklass
peaklass@peaklass1·
If you need a few seconds away from the rush and nonsense of your timeline, here’s a little #peakdistrict peace for your day. 💚
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Madeleine ThriftVIP®
Madeleine ThriftVIP®@ThriftVIP·
@Sunny_Rae1 I’m actually quite annoyed that someone else has viewed it as it is specifically addressed to you. Why can’t they pass it on to you as a consultant at the hospital? If I’m under your care then we’re doing as planned surely?
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Madeleine ThriftVIP®
Madeleine ThriftVIP®@ThriftVIP·
@Sunny_Rae1 I took time and date stamped photos - they’ve just said they can’t keep all this information but I’ve insisted that it needs to be passed on to you as planned
Madeleine ThriftVIP® tweet mediaMadeleine ThriftVIP® tweet media
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Dr Rae Duncan
Dr Rae Duncan@Sunny_Rae1·
#MedTwitter This needs to stop. The End/
Envidreamz@envidreamz

The moment I said the word “Covid,” the primary care appointment was already over. Not in any professional sense or in any way I had ever experienced before. I watched it unfold right in front of me. This is the story of the most blatant gaslighting by a medical professional I experienced during my Long Covid journey. I was there because something had been very wrong since I had Covid. My blood pressure was suddenly high. My resting heart rate wouldn’t come down. I was dizzy, getting constant headaches, chronic fatigue, blurred vision. None of it had ever been an issue before. I explained everything. Then I said the forbidden words. “Could this be from Long Covid?” He didn’t answer. Instead, he smiled. Not in a reassuring or curious manner. Something was off. He reached out, patted my shoulder, and told me to “calm down the chaos in my mind.” Then he said, almost hysterically, “So I was at the airport the other day….” “At the luggage carousel. A woman collapses. People start screaming. ‘Is there a doctor? We need CPR’…” I sat there frozen, mortified. “I go over to help,” he continues. “But I didn’t have to.” A pause. A sneering grin. “Because she CAME AROUND again!” He leans in slightly, “On the CAROUSEL!” Then he laughs and turns to his computer, already typing up my visit summary. Just like that, the appointment shifts into something unreal. No acknowledgment of anything I said. Just a joke. A deflection within a small performance so he could avoid the conversation entirely. I could hear the final clicks of the keyboard. As quickly as he had entered, he was gone. I was still sitting there with a racing heart, the dizziness creeping back in, trying to process what had just happened. Because I understood it then clearly. He was done with me the second I said “Covid.” Everything after that was just his way of leaving without actually walking out. That was the most disturbing part: Realizing the person I went to for help had already decided not to hear me, and laughed his way out of the conversation and out the door.

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The Bee Guy
The Bee Guy@the_beeguy·
#theBeeAt3 Basic bee facts every day at 3pm. # 327 The ability to recognize the same rhythms at different tempos (flexible rhythm perception) had been assumed to be a complex mental task requiring a large brain - but no one told #bumblebees with their sesame seed sized brains! 😂 #bees
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Carl Bovis
Carl Bovis@CarlBovisNature·
As it's Friday, I'm asking all my followers to please retweet (and comment) on this post if you see it, to help my bird account be seen! 🙏😀 To make it worth sharing, here's a tiny Goldcrest saying 'Hi' 😁😍 Thank you very much! ♥️
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Madeleine ThriftVIP®
Madeleine ThriftVIP®@ThriftVIP·
@marinaflares I still have sleep problems but not to the point of being suicidal anymore thank goodness. RLS is another culprit for me, just to add to the hell!
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Madeleine ThriftVIP®
Madeleine ThriftVIP®@ThriftVIP·
@marinaflares …and then it turned out that the best thing for me was HRT! What I’d been asking for, for so long, some endocrine system investigations or trial of something related to that. I’d figured it out myself yet it took another fight to even get that which served me well. Go figure!
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MBwLCME
MBwLCME@marinaflares·
Finally, someone did what I said to my sleep specialist 4 years ago, should be done (the one who dismissed me and my data and recommended CBTi). And, surprise, they find that poor sleep in ME must be due to physiology, not bad "sleep hygiene". link.springer.com/article/10.100…
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