OomaVerse at bluesky @Troevs

pwME. Disabled. Slightly anonymous in order to be free. Bluesky OomaVerse Midlands, UK Joined May 2021

Tweets

6K
Followers

405
Following

553
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5K

Yr buskined mistress & yr warrior love @rhymeswithvery

2 days ago

do pwME/pwLC have any tips &/or tricks for managing the stress, noise, discomfort, etc, of a dental appt? & if you've had success contextualizing yr limitations/health challenges for a dentist, i'd so appreciate hearing how you managed that, too. 🫂

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sean stidston 🇵🇸 @seanstidston

2 days ago

How do severe patients survive with minimal support? I’m being moved into temporary accommodation that is just a room no means to cook. I have to register with every single letting agent in my area, I’ve got to correspond regularly with a housing officer. With next to no support.

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Dr. Ashley | The Panicked Foodie @PanickedFoodie

3 days ago

Please read this critical analysis of azelastine (OTC nose spray) in preventing covid-19, before you run out and buy it.

Mike Hoerger, PhD MSCR MBA @michael_hoerger

4 days ago

Please read this critical analysis of azelastine (OTC nose spray) in preventing covid-19, before you run out and buy it.

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OomaVerse at bluesky @Troevs

3 days ago

Feeling so crappy today it's a "might as well experiment with a new treatment" day! I've been careful and resting and waiting, waiting, waiting to recover from a flare of a symptom that was mainly resolved. Tired of waiting today so throwing a new thing into the mix.

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elle carnitine 🍉 @elle_carnitine

4 days ago

The only clue I have is that I got this a couple of years ago when I started supplementing calcium, and it went away when I added magnesium. Could it be calcium toxicity? I haven’t added any more calcium recently but maybe it’s cumulative?

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elle carnitine 🍉 @elle_carnitine

4 days ago

I need help! I keep passing out, several times a day, almost like narcolepsy attacks. Does anyone have any ideas what it could be, and what to do about it? It feels like there’s something toxic in my brain

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Erin C. Sanders, MSN, WHNP-BC (She/Her) @ErinSandersNP

5 days ago

@sunsopeningband Saw this coming. They’ve been expanding their Women’s Health market in particular - fertility, infertility, and perimenopause specifically (convenient everyone is conflating perimenopause with LC). I like my oura for sleep tracking. This is how you delete the women’s health data

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𝑫𝒓 𝑵𝒊𝒈𝒉𝒂𝒕 𝑨𝒓𝒊𝒇 @DrNighatArif

5 days ago

🚨Teenage #periodpain linked to higher risk of chronic pain in adulthood 🚨 With teenage girls going #backtoschool, please let’s take their period pain seriously - conditions such as #endometriosis #adenomyosis #fibroids #pmdd #pcos have lifelong effects This is the First…

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Naomi Harvey PhD #WearAMask @Naomi_D_Harvey

7 days ago

“#MECFS Please retweet! Has anyone initially experienced a persistent deterioration from slowly titrating up Low Dose Abilify (0.01mg - 0.5mg) and later, however, a clear improvement at a higher dose (0.7-2mg)? Thanks!” Reply to @JuliaBeepBoop

JuliaBeep @JuliaBeepBoop

a week ago

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Yr buskined mistress & yr warrior love @rhymeswithvery

a week ago

do we understand the mechanism whereby a mod/severe pwME can experience sudden, temporary hoarseness & congestion-like sxs while talking?

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María Richardson @_diatoma

a week ago

Any thoughts on why stopping LDN has given some pwME withdrawal symptoms, including akathisia? I stopped it (titrating down) because I didn't notice improvements after 6 months & Naltrexone is hard to get & compound here (Mexico). > month afterwards I still have worse insomnia.

Brain Inflammation Collaborative @BrainInflCollab

a week ago

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GET A GRIP @docrussjackson

2 weeks ago

🧵 'Flag Force UK': The “Grassroots” Group With Hidden Think Tank Ties. Flag Force UK presents itself as a patriotic, grassroots movement “built by enthusiasts, for enthusiasts.” But closer inspection suggests it may be a coordinated #astroturf operation...

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@TheRealMcCoy aka Meghan @RipperMD41

2 weeks ago

If you have #MECFS or #LongCovid did post-exertional malaise (PEM) ever lower your baseline?

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OomaVerse at bluesky @Troevs

2 weeks ago

Well that's quite sombering.

OomaVerse at bluesky @Troevs

2 weeks ago

Well that's quite sombering.

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Justine Barron @jewstein3000

3 weeks ago

Looking to hire someone experienced at social media marketing. Disabled applicants preferred. DM me.

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E ❀ @farbeyondtired

3 weeks ago

My ME has been on such a huge decline before this and getting out of the house to get the tube fixed is impossible so that's basically it for me now 🤷🏻‍♀️ I can't survive without the feeding tube. Last time this happened my gastro Dr refused to fix it anyway I ended up going private

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Todd Davenport @sunsopeningband

3 weeks ago

We still know precious little about PEM, but one thing's for certain--it represents an impaired recovery response to exertion. How do we know this? We had data from systems to molecules, replicated across myalgic encephalomyelitis cohorts originating regardless of patho-etiology.

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Rachel @rachelleese84

3 weeks ago

Another pwME is being mistreated by an NHS hospital. Katie’s looking for resources and experiences of people no longer needing tube feeding. Please help if you can. #myalgicencephalomyelitis #millionsmissing #fundtheplan

Katie @katie_andME

3 weeks ago

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Katie @katie_andME

3 weeks ago

Gastro wants to speak to ME consultant about ME and tube feeding. I contacted the two very well known ones who have also helped me in the past but no response/told to busy. I’m at such a loss of what to do.

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Katie @katie_andME

3 weeks ago

Despite confirmed delayed gastric emptying on GES, gastroparesis being ignored, told issues are functional, my overall health has been "over medicalised" , should come off meds for all conditions including ME, be admitted to hospital, stop tube feeding just have psych.