Chronicillnesswarrior1 โฟ๏ธ๐โ๏ธ๐๐บ๐ฆ
10.3K posts

Chronicillnesswarrior1 โฟ๏ธ๐โ๏ธ๐๐บ๐ฆ
@ME_Bev7
Wife, mum, Severe ME, MCAS, LC, MALS, hEDS, POTS, dogs, peace, love & forgive โค๏ธ #Chronicillness #takingthepip @MEWarrior1.bsky.social
UK ๊ฐ์
์ผ ลubat 2014
1.8K ํ๋ก์1.4K ํ๋ก์
๊ณ ์ ๋ ํธ์

@life_horizontal @TraceyABurgess ๐คฃ๐คฃ๐คฃ
QME

@atensnut Well, they left out the one man who can beat his younger self in a competition of hotness: Patrick McDreamy Dempsey.
Although older vs. younger Rob Lowe is too close to call.

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We need doctors living with #MEcfs and #LongCovid to speak up openly and publicly. I know this is asking a great deal, but remaining hidden in anonymity will not help patients or advance the cause. This is not the time for silence โ it is the time for courage and action.
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@CK65375 @FionaPWME This is an especially useful practical resource.
Top Tips for doctors created by Doctors_With_ME
doctorswith.me/me-cfs-top-tipโฆ
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@SpinosaPrunus This is wonderful news! Long May it continue. Have a great holiday ๐๏ธ
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With mask, pacing, wheelchair service at the airport. After 4 years of being bed & later housebound our first vacation with our #longcovid #mecfs kid. No crash yet.
Thanks to all the people who helped us in these dark years. ๐
#realTherapies #realHealing
#millionsmissing

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@lunettaporchett Iโve just got used to it tbh. Iโve got to that point now where I simply donโt have the energy to keep going to hospital for tests! Iโm just so exhausted mentally and physically. Unfortunately, I no longer have faith in the NHS and Iโm an ex nurse. So sad! X
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@ME_Bev7 Iโm so sorry youโre not getting good answers or care.
Iโve been sent to hospital by GP as my O2 was in the 80โs. They didnโt know what was causing it. It normalised on its own, but it must be so scary to be sent home with no improvement or diagnosis โค๏ธโ๐ฉน
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@life_horizontal @TraceyABurgess Thank you. Iโm on Ketotifen now and with an operation next month I need it. Also in a current MCAS flare ๐คฆโโ๏ธโ chocolate ๐ฌ
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@ME_Bev7 @TraceyABurgess Thanks for your reply, I donโt have photo id, just wondered if it was a definite thing that was needed.
Hope that you have positive outcomes from your medication.
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@lunettaporchett Was meant to attend outpatient appointment this week for respiratory tests but was too fatigued to attend.
Still experiencing intermittent breathlessness & air hunger.
A&E is only for life or death cases it seems. If they canโt find the cause youโre sent home ๐คฆโโ๏ธ
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@lunettaporchett I was taken to A&E in Feb by ambulance due to breathlessness. I couldnโt sustain good O2 sats so was on O2 for 20 hours. CT scan & X-ray โonlyโ showed atelectasis. Was transferred to a ward & because nothing serious was found O2 removed & sent home still in the same state! ๐คทโโ๏ธ 1/
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@life_horizontal @TraceyABurgess Yes I did. The appointment was ยฃ150 ๐ฌ plus cost of the prescription.
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@ME_Bev7 @TraceyABurgess Did you have to have photo ID to make the appointment?
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@KSchnickelfritz Thank you Kirsty for sharing this. I canโt see anything beautiful from my bedroom as we live on a side road, but we also have shutters. But I canโt cope with too much light anyway so itโs so much easier to see beautiful scenes from a short video.
Spring has sprung! ๐ผ
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For my bedbound friends. Spring has sprung.
Apologies I tried to steady the camera but there is a bit of shake. #ME
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@benonwine I see a dog too ๐คฃ
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Chronicillnesswarrior1 โฟ๏ธ๐โ๏ธ๐๐บ๐ฆ ๋ฆฌํธ์ํจ

@wesstreeting @SharonHodgsonMP @UKLabour @DHSCgovuk @NHSEngland
Some people will not make it to the next year. And if they do, itโll be without safe healthcare, and worse off.
#finaldeliveryplan #severeME

#ThereForME@ThereForME_UK
@SharonHodgsonMP @wesstreeting ETA: We've now got a briefing up here - for people reaching out to MPs ๐ We're calling on DHSC to put in place robust interim measures to make sure that specialised support and, crucially, patient safety, don't need to wait until April 2027 and beyond. tr.ee/c6lx0MzBsx
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@Naomi_D_Harvey Thank you X
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2. Dicksonโs also now run an MCAS clinic and cover MCAS meds, new appointments can be booked here:
shop.dicksonchemist.co.uk/product/mcasinโฆ
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For those who relied on Dr Taylor for prescriptions, this thread will share other options:
1. For LDN the best source is to get it prescribed by Dicksonโs Chemist here shop.dicksonchemist.co.uk/the-ldn-privatโฆ
markmooch@MarkMooch
@AlbaDocherty Do you have a source for a NDA? I never got one when a patient of hers. She has been cyber bullied out of her job by the sounds of it, many patients will be worse off for it.
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@hopefullizzy @lammas_leaves Iโm so sorry to hear this Lizzy. Sending you much love.
Trev sends his love too ๐ซ ๐ xxxx

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