Hrefna

#Mecfs & #Pots since 2012.
Moderate/severe, mostly off twitter now.

🏳️‍🌈 She/her

From the river to the sea, Palestine will be free 🇪🇭

[Hrefna @hrefnask]

There are two things keeping me alive right now: Hope for actual treatments for #pwME and hunger for revenge 😈

#MECFS
#MyalgicEncephalomyelitis

[Hrefna @hrefnask]

@himmatb15 Hi Himmat! I hope I didn't worry you too much. I've not logged in in forever. I've been on a long long break from most social media and news. It's sweet of you to tweet this though. I hope you are doing as good as possible. 💛

[Hrefna @hrefnask]

@_diatoma 🫶🫶

[Hrefna @hrefnask]

A brand new #MECFS research and knowledge center was opened in Akureyri on Friday!

https://t.co/oVdBdamlhG

[Hrefna @hrefnask]

I have good news! Yesterday the Icelandic health minister announced plans to open some sort of a center for #MECFS where both GPs and paitients can get assistance and advice on health care! They want to do research as well! This is long overdue and I hope they can open soon 🙏

[Hrefna @hrefnask]

@AaronCa11 Ah yes I remember seeing this article. There will be a physio therapist working there but they won't be doing GET. I think it will be more of a gentle movement IF appropriate type of thing. I'm pretty sure they have the Physios for ME book. But it looks very bad when reading this

[Hrefna @hrefnask]

@RorPreston @wecrunchme Awesome! Thank you

[Hrefna @hrefnask]

@AaronCa11 Oh I didn't see your post. But it's ok, that's very understandable. The article doesn't really explain it well enough in regards to that. But I can assure you there's no GET or CBT. The doctors behind this are very up to date on everything and attend every conference they can.

[Hrefna @hrefnask]

@emmiskyten Yes! It's amazing. 🥹

Here is an example from our biggest media: https://t.co/gfib4mc1IA

[Hrefna @hrefnask]

Even the news seem to get it right because no one talks about CFS, they all say "ME is a serious neurological illness". Can you believe it? Hopefully this will improve care and treatment fast and have ripple effects outside of Iceland. There can be proper public healthcare for ME

[Hrefna @hrefnask]

Jonas Bergquist was an honorary guest. His speech starts at about 59:00 minutes in. (A baby cries in the distant background a bit while he's speaking, and then there is clapping after). The other speeches are in Icelandic.

https://t.co/cvEc7a5SDq

[Hrefna @hrefnask]

@emmiskyten Thank you! I will look out for that option.

[Hrefna @hrefnask]

I'm looking into the heavy metal hair test at Mosaic DX, but when I want to order it seems like I need to register and only practitioners can register. How have #pwME been ordering these tests themselves? I'm a bit lost in cognitive impairment.

[Hrefna @hrefnask]

@egervasics2 I'm sorry your daughter is severe and that the tests didn't provide many answers for you 🤍

Is this from the CellTrend lab?

[Hrefna @hrefnask]

Anyone tested positive for anti-adrenergic and anti-muscarinic receptors? I am on a (what seems to be impossible) mission to get these tested. Wondering if autoimmunity is partly driving my illness state.

#MECFS
#POTS

[Hrefna @hrefnask]

@laurenjonik Not sure if it's my vision but I have burning in my eyes and eye pain (+ sometimes nausea and headaches) when I move my eyes up, down and to the sides. Sometimes there is pain nehind my eyes.

[Hrefna @hrefnask]

I'm struggling to use screens now bc of neuroinflammation. Been having a very tough summer in that regard. I've not been able to reply to messages much, I'm very sorry - I'll get back to you when able.

What has worked best for you for neuroinflammation? Pls write dosage too <3

[Hrefna @hrefnask]

Would also appreciate reposts very much. <3

[Anna (please boost pinned post) @halcionandon]

I really need somewhere to live. Can someone please help me? I’m being neglected and abused. I can’t do anything better than I am I just need help.

Those domestic violence numbers don’t work they don’t help disabled people. I need someone to take me in.

Please help.

[Hrefna @hrefnask]

Reason I'm asking is cause I saw this video. I'm sorry but I'm too ill to do a video description 💔

https://t.co/vqVVJmSFBY

[Hrefna @hrefnask]

Is it true that in France a few doctors are using supplemental oxygen via home concentrator for Pots? Does anyone know more?

#Pots
#MECFS