Ami

@Blinkoxu @tarello_walter Do you mind me asking what treatment? I really hope it helps you 🥹

@amiandlife the absolute cheapest is to get a pbs from a dr who understands this stuff not a hospital… @tarello_walter is a good one. he did mine. ebv can also be reactivated by covid. there’s a way out for us, i don’t know if it’s this. i’m starting treatment will update. 🙏

I’m living off three foods. I wish I was joking. I’m so terrified, I cry a lot. I’m currently waiting to try Sodium cromoglicate which I can barely afford but I have no other option. I cannot believe this is my life and no “doctors” even care. #mcas #longcovid #chronicillness

@Virus2Host It’s ok, thank you for your advice :)

@amiandlife Some say GABA powder because yada yada unique to LC MCAS I haven’t tried it yet I’m sorry

@findinSilver @orthoterminator Blocked 🥲

@orthoterminator @amiandlife Ami, block the poster who made this ridiculous comment! I don't know what's wrong with people, but my goodness the crazies show up on x sometimes! Block, block block!

@CMccala88231 Sadly reacted bad to Ketotifen. I really hope you get some improvement :)

@amiandlife I’m in the same boat. Ketotifen has helped a little…. I did just test positive for Babesia and bartonella and borrelia. Hoping treating this helps. I hope you find some relief.

@Blinkoxu Never been tested and don’t know if I could afford to tbh. But EBV and Covid seemed to trigger these issues for me :/

@amiandlife do you have borellia bartonella or babesia? i thought i had “long covid” after a covid infection and never got better but i recently found out i have those three and maybe it was them all along.

@Virus2Host Tried DAO, bad reaction. Will look into Luteolin, thank you :)

@amiandlife What about DAO or Luteolin?

@findinSilver thank you ❤️‍🩹 I’ve tried quercetin but react bad, I think because of sertraline which I’m on. Will try cromolyn spray. Also need to try and find a filler free vitamin c 💔

@amiandlife Doctors don't know. For me: I'm taking a lot of quercitin. Have cromolyn spray. Natural Vit C helps bring down flares too. After I built up vit B5, because it's needed for the process to eliminate histamines, I started adding B1.

1) 🇩🇪 There are now multiple trials of Immunoadsorption/plasmapheresis on ME/CFS. We've tried to make a brief overview but feel free to add studies in case we missed some. Looks like all of them are from Germany. Mostly look forward to the 2 sham-controlled trials.

Please stop going into the medical or healthcare field if you lack empathy

Tennis star Emma Raducanu has withdrawn from the Madrid Open. She has been reportedly suffering from a "post viral illness" since February share.google/E5L2j3omad8skR…

@LogicOverLabels How do I fix it then? :///

Abnormal results in my gut test: #longcovid #mcas

covid can fuck up your thyroid btw !

@LogicOverLabels I’ve been on it for the last two years due to MCAS

Had my Biomesight results back. Pathobionts was my worst one. Kinda expected it to be worse since my gut issues and MCAS are horrific. #longcovid #chronicillness #mcas

@iatrogenicse literally 💔 the way I have no clue what’s going on 😭

How do people have so much time for drama when you’re suffering so badly I can barely make it through each second.

@PuppyNakamoto Is that HCL Betaine?

@amiautoimmunex Yea.. I think low stomach often the reason for SIBO. Low acid contribute to certain bacterial overgrowth. I’m trying to supplement with the HCL now

My brother Gary Shorrock is taking on one of Britain’s most demanding endurance challenges for @MEResearchUK : the Bob Graham Round in the Lake District To complete it, he must cover around 66 miles, summit 42 fells, and climb more than 8,200 metres (approximately 26,900 feet of ascent) all within 24 hours. That means steep, rocky, boggy terrain, long hours on the move, and likely sections in darkness and harsh has been weather. The Bob Graham Round is an exceptional test of endurance, preparation, judgement, and determination. Only aound 3000 people have ever achieved it. Gary has previously undertaken major endurance events and fundraising challenges, raising over £20,000 for an Alder Hey children’s hospital. This time, he is taking on the Bob Graham Round to raise money for a devastating yet underfunded condition. ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome) is a serious, disabling, life-altering illness. It can leave people unable to work, study, socialise, or manage ordinary daily activities. In severe and very severe cases, it confines people to their beds. Research has shown that quality of life for people with ME/CFS can be among the worst reported for any medical condition. Research has shown that quality of life for people with ME/CFS can be among the worst reported for any medical condition. Scientific research is increasingly identifying objective biological abnormalities in ME/CFS, including in blood, immune and metabolic function. Yet despite its severity, the illness has remained profoundly underfunded for decades. The funds raised through this challenge will go to ME Research UK, a charity that commissions and funds high-quality biomedical research into the causes, consequences, and treatment of ME/CFS. The work of @MEResearchUK reflects the urgent need for better scientific understanding of a disease that affects hundreds of thousands of people in the UK and leaves many housebound or bedbound, with their lives on hold. This fundraiser has been co-organised by Gary Shorrock and me, his brother, after learning more about the enormous impact of ME/CFS, its extremely poor quality-of-life burden, and the longstanding lack of research funding devoted to the illness. The cause has become deeply important to the family. I was diagnosed with ME/CFS in November 2025 after 18 months of symptoms, post Covid. Support for this fundraiser will help contribute to urgently needed research into a devastating and neglected illness. Any donation would be greatly appreciated, and sharing the page would also make a big difference. Thank you for your support. It means a lot. justgiving.com/page/gary-shor…

@PuppyNakamoto Do you think it’s SIBO? 😔 I’m so tired thisss

@amiautoimmunex Feelya

Powerful testimony on #MECFS by Emma Shorter in the Scottish Parliament from 2018 “It turns fit and active people into ghosts… I know teachers who can’t teach, children who can’t play, and parents who can no longer hold their children.”

@zkrolled I had H Pylori test I believe, it was negative. No SIBO test. It’s so difficult when the doctors don’t care 💔 but thank you so much.

@amiautoimmunex I'm sorry😔I know that SIBO/H Pylori can be done by a breath test, but I haven't done it yet. An Endoscopy can rule out SIFO or celiac, but all this requires testing and a competent doctor.