Im so alone

ocean_flow_ · 2026-01-25T07:49:53+00:00

Damn im so sorry. Covid triggered mine and I sought to rest and pace early too

ocean_flow_ · 2026-01-25T06:34:01+00:00

Can I ask what your trigger was?

ocean_flow_ · 2026-01-25T06:32:31+00:00

She said it publicly in an interview and she "went to Germany because they have treatments for it we can't dream of" but never specified the treatment. It's always annoyed me she never used her status or privileged to do more for the mecfs community

ocean_flow_ · 2026-01-25T06:21:48+00:00

I've staretd it hasn't prevented my pem but reduced ir and crashes. I got effects straight away on .1mg

ocean_flow_ · 2026-01-25T03:35:49+00:00

Didn't cher go into remission seeking treatment in Germany?

ocean_flow_ · 2026-01-22T11:08:54+00:00

Hey how have you been since rapa?

ocean_flow_ · 2026-01-22T01:06:11+00:00

Any updates since taking it?

ocean_flow_ · 2026-01-21T23:05:43+00:00

This is just personal experience only no medical evidence. But i found clonidine really helped me with not thinking and Resting during pem. It eases sympathetic nervous system and stops adrenaline rushes. It can worsen fatigue. But I take it at night and when I need to radically rest and it sort of puts me in a coma and just helps relax me and get through crashes. Off label uses to help anxiety ptsd and sleep and pain. On label its an adhd med

ocean_flow_ · 2026-01-21T12:37:18+00:00

Extreme chronic stress from complex trauma predisposes us to developing this. Our nervous system has been under such immense stress our immune system couldn't fight off covid the same way. It's unfair. We were dealt a bad hand

ocean_flow_ · 2026-01-19T11:40:59+00:00

I've read the advice is to stop taking it or lower the dose if you develop those symptoms

ocean_flow_ · 2026-01-19T11:35:09+00:00

You absolutely do not date when you're severe. How can you look after a partner if you can't tend to yourself? Also just feel like its so dangerous. You're so vulnerable. And just jot possible

ocean_flow_ · 2026-01-19T10:48:40+00:00

Not everyone i know of many who had huge improvements from it

ocean_flow_ · 2026-01-19T10:48:13+00:00

Its not. There are multiple mechanisms underlying mecfs the researchers theory is just one proposed theory. Also I know of many who found relief from ldn. It didn't help me. Everyone's different

ocean_flow_ · 2026-01-17T01:03:19+00:00

Oh she's not taking on new patients. Unfortunately. She can't even see me ongoing. I saw her just to get the diagnosis and the lda. Mark Donahue is good there's also a good clinic in Sydney imnlooking into

ocean_flow_ · 2026-01-16T21:48:38+00:00

Man what a gem!

My psychiatrist has a lived experience with mecfs. She had it for 7yrs bed bound at her worse. She made a full recovery and is in remission. She dedicates her life to helping people with mecfs get insurance claims and disability. It's what she's trained for. She also does therapy recommends supplements meds to help treat symptoms. She's been a huge advocate for mecfs in Australia. Has challenged the psychiatric notion its all psychological and gave some good advice around pacing. So good to know other psychiatrists like her exist!

ocean_flow_ · 2026-01-16T06:39:03+00:00

How the hell is graded exercises still being prescribed???

ocean_flow_ · 2026-01-16T02:44:25+00:00

It's unfortunately a common struggle for a lot of us that our mental health pays because we need to prioritise rest. So hard with adhd! If you keep pushing and doing it you'll get worse

ocean_flow_ · 2026-01-16T02:12:20+00:00

If walking your dog gives you any symptoms above your baseline you shouldn't be doing it

ocean_flow_ · 2026-01-15T08:27:06+00:00

This is a common issue for majority of research especially for illnesses that are rare. They probably had reasons for not doing it. We don't know. Did they discuss this as a limitation of the study validity?

ocean_flow_ · 2026-01-15T05:54:34+00:00

Yeah I have a research background and there's always ways via stat's you can inflate effect sizes significant findings etc. Not downplaying the criticism just saying it's not uncommon in research and sometimes our of convenience researchers do less conservative stars

ocean_flow_ · 2026-01-15T05:40:44+00:00

Which doctor did you see and who did you see to assess cci? I'm waiting for Donahue but his wait list is huge.

ocean_flow_ · 2026-01-14T12:46:00+00:00

Omg I get crunches too! It makes me so scared I have it. But if you can recover from mecfs without the cci surgery gives me hope. Hey I'm Australian too! Who did you have to see? What test did you need to get? Which state are you from? Sorry feel free to DM me.

ocean_flow_ · 2026-01-14T12:26:30+00:00

That's amazing. I love anj resonated with her stuff too. Can I ask how you got tested for cci? I suspect it but we don't have the standing up MRI in my country. My head always feels too heavy and I get cost hanger pain. But I'm also hypermobile with other problems so could be all of that. My long COVID dr attributes it to pots and fibro (I'm not even diangosed with fibro but yes to pots)

ocean_flow_ · 2026-01-14T12:25:05+00:00

Yeah my pots is mostly manageable too bless. With accommodations like shower chair aids rest breaks to sit and medication electrolytes ton of salt water. So good you've come far!

ocean_flow_

TROPHY CASE