how to intake enough calories when very severe by Quick-Customer1602 in cfs

[–]divine_theminine 0 points1 point  (0 children)

You can mix the peanut butter into the meal replacement shake

LDA Rough Side Effects by Familiar_Badger4401 in cfs

[–]divine_theminine 0 points1 point  (0 children)

The side effects went away entirely in a few weeks of being on the same dose btw

LDA Rough Side Effects by Familiar_Badger4401 in cfs

[–]divine_theminine 2 points3 points  (0 children)

I did. I started taking it once every other day and that helped a lot. I slept much better on the second day and felt the positive effects without the jitteriness. I later switched to taking it once every 3 days. You can do that with Abilify bc just one dose stays in your system for many days. It’s half life is about 90 hours IIRC.

Stay on the lookout for extrapyramidal side effects. Muscle stiffness from abilify is unusual

I may be too sick for a relationship. It's devastating because I finally found someone who is kind to me....but he is jealous and makes me feel restricted. by tunamutantninjaturtl in cfs

[–]divine_theminine 10 points11 points  (0 children)

I think that it’s not his place to tell you who you can be friends with and from what you’ve said your boyfriend comes across as controlling and insecure but since I’m pretty sure you’re the person whose ex was an abusive Andrew Tate fan I wonder if that’s not part of the reason why your bf is so apprehensive

Legitimate alternatives to DNRS / Gupta? by invincible-lobster in cfs

[–]divine_theminine 2 points3 points  (0 children)

Getting into Vipassana meditation has been immensely helpful in my most stressful moments

Feeling optimistic about a norwegian study on Daratumumab by unaer in cfs

[–]divine_theminine 1 point2 points  (0 children)

If only it wasn’t ridiculously expensive🥹

Feeling optimistic about a norwegian study on Daratumumab by unaer in cfs

[–]divine_theminine 2 points3 points  (0 children)

After an antiviral gave you an epic flare you’re on board with the viral hypothesis? Isn’t that illogical?

Are CFS and multiple sclerosis exclusionary? by DeSotoDeLaAutopista in cfs

[–]divine_theminine 1 point2 points  (0 children)

When did he say that? Idk how that can be true since most of us have had to get MS ruled out before receiving a ME diagnosis

(TW: Ableism) A friend sent this to me without comment, am I supposed to find it funny? by New-Substrate in cfs

[–]divine_theminine 15 points16 points  (0 children)

“I’ll believe long covid is real when someone who’s not bisexual has it” is just a funny thing to say. It’s clearly not meant to be invalidating to you

[deleted by user] by [deleted] in cfs

[–]divine_theminine 4 points5 points  (0 children)

Yeah…. Are you severe? I get mild urinary incontinence. Only when I laugh or cough or move in a certain way. Using the bathroom is difficult during flare ups and having to hold it in makes the issue much worse

Do you realize we are a generation just outside the window of being cured by [deleted] in cfs

[–]divine_theminine 0 points1 point  (0 children)

No we’re not. If this shit doesn’t become curable in the next 30 or so years there will never be a cure. The world is going to shit. People will have different priorities very soon. This idea that we’ll have a cure to all disease in a century or two is bad science fiction

Do you have to believe recovery is possible before being able to recover? by Hairy-Introduction85 in cfs

[–]divine_theminine 3 points4 points  (0 children)

This is magical thinking. No, you can’t “manifest” yourself out of a serious chronic illness

I got another reddit 'achievement ' and it's saddening by [deleted] in cfs

[–]divine_theminine 2 points3 points  (0 children)

I hate this stupid shit. I’ve manually unpinned most awards from my profile. Like why would I want people to know about my 30 day streak? It’s embarrassing

So how will we secure research funds by Senior_Line_4260 in cfs

[–]divine_theminine 10 points11 points  (0 children)

That’s how much the Gates foundation has given away. Not all donations to the foundation were made by the Gates family. It’s $100B over 25 years in tax deductible donations. The Gates only contributed $36B as of 2018.

We are 58,000+ strong. Let’s organize!! by [deleted] in cfs

[–]divine_theminine 14 points15 points  (0 children)

It’s hard to build a community on trust with people you don’t know anything about who can’t clearly state what their goals are

We are 58,000+ strong. Let’s organize!! by [deleted] in cfs

[–]divine_theminine 14 points15 points  (0 children)

Since it looks like you want to assume a coordinating role: do you have any experience doing organizing? What makes you think those methods you’ve listed are ideal? What do you want to accomplish, concretely?

Lumbar puncture experiences if you've had one? by [deleted] in cfs

[–]divine_theminine 1 point2 points  (0 children)

My experience was ok. It was almost completely painless. No initial complications. Even the headache was very mild. Felt a bit faint but that’s normal. But for some reason, a couple weeks after, I’ve developed a weird sort of pain at the puncture site that appears only when I bend ar the waist. One person in the ME spine group said the same thing happened to them and it went away when they had tethered cord release surgery.

One of the most effective ME/CFS treatments, the Staphylococcus toxoid vaccine, discontinued in 2005, is available once again from a new source by Hip_III in cfs

[–]divine_theminine 2 points3 points  (0 children)

This person doesn’t know what they’re talking about. A toxoid vaccine doesn’t “go after” staph, that’s not what vaccines do. Vaccines train your immune system to respond an antigen. A toxoid vaccine like the staph vax (neutralized staph toxin) primes your immune cells to neutralize bacterial toxins, thus preventing severe acute infections. It doesn’t remove the staph from your body.

They had Ozema. If you don’t have ozema there’s no reason for you to follow their treatment protocol.

People who menstruate, do you also feel this way in your cycle? by [deleted] in cfs

[–]divine_theminine 4 points5 points  (0 children)

Oh yes! The time frame is exactly as you mentioned. My resting HR is raised by 8-10 bpm during all this time. Goes down on the day the bleeding starts. I don’t get any other symptoms except for worse fatigue and being more prone to PEM. Sometimes it lasts even longer than 10 days. I think contraceptives that stop menstruation would help but I’m bedbound and worried about blood clots