THREAD | Carbon Dioxide + ME/POTS

TL; DR: Bedbound-level ME & POTS here. Wearing an FFP3/N95 alleviates some of my symptoms (at rest). Have looked into why that might be + the connection with CO2.

Wondering if this could help in terms of:
(a) mitigating PEM?
(b) general symptom reduction?

1/23

@angryhacademic.bsky.social

I've recently been trying to learn about Carbon Dioxide, blood flow, CO2 levels in ME/POTS etc.

Is this something you/someone else has already talked about on here?

If not, I will try to make a thread bc I've found some things I think are intriguing.

@naomidharvey.bsky.social I was wondering if you know anything about Carnosine supplementation? Asking because it was you who mentioned Zinc-L-Carnosine to me (for gut-related reasons).

I've been looking into things to trial for MCAS reasons (Zinc is one, but Carnosine came up too).

1/

Joy is an essential part of resistance as it reenergizes us, gives us something to fight for, and undermines the control and subjugation oppressors seek.

This is my SOS 🆘

I’ve had ME/CFS since I was 15 and since 2022 I have been Severe, in the 25% who are house or bedbound.

It’s frightening and awful and we have no help or dedicated medical care.

We need help, this is my SOS 🆘

#DisabilitySOS #MillionsMissing @meactnet.bsky.social

“This survey aims to collect information from individuals experiencing Long COVID who have had adverse reactions to CT or MRI contrast agents”

Question for the #MCAS crew:

Does anyone have experience with taking more than 1g of Vitamin C per day?

The only kind of Vitamin C I can tolerate is a 1000mg effervescent one.

Wondering if that's something I could take a couple of times per day?

1/

Dealing with someone with very severe ME can be frightening as most people, including medical doctors, have never seen a patient so ill.

Understandably, there is a natural tendency for people (families and physicians) to panic, to worry that the person might die, and to rush the person to a

Does anyone in the #ME #POTS #MCAS #LongCovid crew regularly drink redbush/rooibos tea?

I've recently started drinking 2-3 cups of redbush tea per day and my body feels significantly...calmer?

Curious to hear if anyone's had a similar experience!

Don’t forget that if disability makes this hard for you, you can tag your post #Alt4Me to add it to a feed requesting a volunteer come write alt text for you.

And if it’s not hard, consider pitching in to fulfill a request: bsky.app/profile/did:... Also a valuable act of solidarity.

(nofeed)

An important new study on PEM showing abnormal spinal fluid metabolites before and after an exercise challenge:

In controls, metabolites were created in response to exercise, in ME/CFS they were consumed.

As with other research this shows an aberrant metabolic response to exertion in ME/CFS

Just came across a document called 'Supporting People with ME/CFS in Hospital'.

It actually looks very helpful and was created last year: meassociation.org.uk/wp-content/u...

Sharing in case it helps anyone else.

@hopefullizzy.bsky.social @naomidharvey.bsky.social @angryhacademic.bsky.social

@remissionbiome.bsky.social @isabelrb.bsky.social @tessfalor.bsky.social

Going on a 5-day course of antibiotics (think it's phenoxymethylpenicillin but don't have the prescription just yet).

Let me know if there's something I can do to help Remission Biome!

How do people with MCAS keep their prostaglandins under control?

NSAIDs may not be a safe option for me (bc I have IBD).

Any thoughts/experiences welcome.

Have just started PEA.

Am also new here and have no idea how this works.

Tagging @naomidharvey.bsky.social in a boost might help? <3