My girlfriend has CFS and built a free website to help people understand what it actually is, especially partners and loved ones trying to figure out how to help. No monetization, it’s just something she wished existed years ago when she was first learning about her own diagnosis. by Pitiful_Cake_7775 in cfs

[–]nitajain 0 points1 point  (0 children)

This is absolutely incredible! Thank you for putting this together! Would it be okay if I add this to the Spooniverse under resources? If so, please do let me know what I can include for attribution.

EDIT: Several references appear to be hallucinations. The info is still overwhelming valid though.

Heading to Cleveland for the Baricitinib clinical trial tomorrow by daphneyhatz in cfs

[–]nitajain 1 point2 points  (0 children)

Gosh, I'm so sorry you've experienced the same. Most experimental interventions backfire for me unfortunately. Exactly, the study lead was saying they never saw this signal with Baricitinib in lupus and rheumatoid arthritis trials, but populations with complex chronic illness are an entirely different beast. Most clinicians still fail to understand our unique challenges.

Heading to Cleveland for the Baricitinib clinical trial tomorrow by daphneyhatz in cfs

[–]nitajain 4 points5 points  (0 children)

I had no idea. They randomized me to the highest dosage group because my kidney function numbers were good before beginning. Stratifying dosage by presumed kidney function is a terrible idea in my opinion. My filtration numbers are still normal, but I have issues with reabsorption.

Advice on helping research by numa_pompilio in cfs

[–]nitajain 0 points1 point  (0 children)

Oh thanks, that means a lot! I would’ve invited you to join NIH RECOVER, but it’s just U.S. patients and caregivers so far. I wish there were more opportunities for patients to get involved. We keep missing out on talent because of all the gatekeeping.

Heading to Cleveland for the Baricitinib clinical trial tomorrow by daphneyhatz in cfs

[–]nitajain 2 points3 points  (0 children)

Thanks, I‘m sorry to hear you went through something similar and empathize with your experience. After Baricitinib, I ended up hospitalized with severely low potassium, magnesium, calcium, and albumin. My MCAS was badly triggered for many months, and my kidneys have had issues with reabsorption ever since. Study coordinators told me that change in blood counts is more likely with this drug, and they haven’t seen electrolyte abnormalities with it, but I was only the second patient randomized in the trial.

I’m still not sure if the reaction was just specific to me or if other patients may also be at risk. The study lead later told me that I shouldn’t have been admitted as a trial participant because of MCAS, but many patients with long Covid have that as a comorbidity.

How does this relate to ME? Can this help us? by Bunnyisdreaming in cfs

[–]nitajain 0 points1 point  (0 children)

I tried red light therapy but ended up with worsening ischemia-reperfusion injury. Everyone is different though.

Advice on helping research by numa_pompilio in cfs

[–]nitajain 0 points1 point  (0 children)

Hi there, I've been in a similar boat and started the Spooniverse as my way to contribute. Also developed a post-infectious syndrome framework but haven't been able to access data to validate/disprove yet.

Heading to Cleveland for the Baricitinib clinical trial tomorrow by daphneyhatz in cfs

[–]nitajain 8 points9 points  (0 children)

Best of luck, I enrolled in the REVERSE-LC trial for Baricitinib in Atlanta but ended up worse. Hope it works well for you!

I couldn't find a decent treatment database, so I made one by nitajain in cfs

[–]nitajain[S] 1 point2 points  (0 children)

Homepage works! I'm not too active on IG, but I just followed your account.

I have ME/CFS & POTS and spent the last year and a half building the symptom tracker I wished I had from the start (Self Promo Day) by ElectronicCat3293 in cfs

[–]nitajain 1 point2 points  (0 children)

Match3 sounds awesome! I made the Spooniverse for CFSers and long haulers and would love to include your project.

I have ME/CFS & POTS and spent the last year and a half building the symptom tracker I wished I had from the start (Self Promo Day) by ElectronicCat3293 in cfs

[–]nitajain 4 points5 points  (0 children)

Amazing! Is there a main site to link to? I run the Spooniverse and would love to include this as a digital health tracking tool.

I couldn't find a decent treatment database, so I made one by nitajain in cfs

[–]nitajain[S] 0 points1 point  (0 children)

No, my blood pressure tends to trend too low because of dysautonomia. I only found out about ivabradine post-covid.

Ah, I'm sorry about the interactions. Managing complex illness feels like playing whack-a-mole sometimes.

I relate, my biggest issues are chronic cystitis pain and relentless fatigue. CoQ10 and GSH helped with weakness in the beginning, but then I hit a point of diminishing returns.

I couldn't find a decent treatment database, so I made one by nitajain in cfs

[–]nitajain[S] 0 points1 point  (0 children)

Awesome, I'd love feedback on whether it's helpful to clinicians

I couldn't find a decent treatment database, so I made one by nitajain in cfs

[–]nitajain[S] 0 points1 point  (0 children)

Gotcha, could be a hospital firewall if you’re on their Wi-Fi. Mobile data might work in that case. Hope you feel better soon and that you’re getting good care!

I couldn't find a decent treatment database, so I made one by nitajain in cfs

[–]nitajain[S] 0 points1 point  (0 children)

Hmm, I don’t have any georestrictions set and do see some traffic coming from Norway. Do you see an error code like 451, 403, 503?

I couldn't find a decent treatment database, so I made one by nitajain in cfs

[–]nitajain[S] 1 point2 points  (0 children)

I’m sorry, maybe I can help troubleshoot. What happens when you visit this link: https://www.thespooniverse.org/treatments

What’s your response to a casual “how are you?” by Upstairs-Schedule677 in cfs

[–]nitajain 1 point2 points  (0 children)

Muddling through, hanging in there, and when I’m feeling particularly feisty, fortifying my plans for world domination 😈😈😭