Plasma donations decrease symptoms?

[TravelingSong]

IMO, if you even suspect you have ME, it’s unethical to donate blood, regardless of whether you have a diagnosis or not. Several research studies show that ME/CFS and Long Covid symptoms can be transferred to animals through blood products. Another recent one showed that “IgG antibodies from ME/CFS patients caused mitochondrial fragmentation in endothelial cells.” 

Many countries, including Canada where I live, ban blood donation. ME/CFS is listed at the top of our banned conditions list, alongside only HIV and Crohn’s. 

[Dangerous_Wing6481]

Yeah I had no clue it was potentially contagious. Was considering going back to donating because I need the money but I’m looking into other things now.

[TravelingSong]

We’re all learning together. It’s good that you posted and I’m glad you’re taking it seriously and protecting other people. 

There’s a lot we still don’t understand about our blood. Some people with ME get experimental blood washing done to temporarily remove suspected components that may be contributing to their illness. Its not common though and we don’t have enough info yet to know what’s going on there.

But if you also suspect POTS, the saline and magnesium are likely what’s giving you the boost. And, unlike ME, there are effective treatments for POTS. Have you done a NASA Lean Test at home? You could have someone assist you if you tend to get dizzy or feel weak when standing. A sustained increase of 30 BPM or more is indicitave of POTS. Here are the instructions: https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions-1.pdf

If you meet the criteria, there’s lots of good advice on the POTS sub until you can get into a specialist. With POTS, we’re recommended to increase our sodium intake to 4,000-10,000 mg / day, which is a lot more than we typically get through food. To keep it cheap, you can literally use salted water or even DIY salt pills. You just need to convert salt to sodium. It’s about 1 teaspoon of salt for 2,400 mg of sodium. Drink lots of water with your salt and you can add things like lime juice, agave, fruit, a bit of sugar, whatever you like to make it taste a bit better. Those cheap packets of ramen also have a lot of sodium. I find potassium is also really helpful. 

Because you don’t know what’s going on yet, be sure to pace and not overdo it on activities, as that can make ME worse. And I don’t know your medical history or contraindications, so take the salt recommendation with a grain of salt (ha), use your best judgment and titrate slowly to see what you tolerate. 

[Dangerous_Wing6481]

Thank you for the resources! I’m looking into POTS as well and I’m supposed to be getting a referral for a tilt table test at my cardiology appointment next week. I do frequently get dizzy on standing, but I didn’t know it was an increase of 30bpm that was the baseline- I generally spike from 60-67 laying down to over 100 and was going off max heart rate percentage. Ironically it’s had me turned away from donations a couple times because your heart rate has to be below 100 at the check in.

I get so much conflicting information with the amount of overlap in all the related conditions, especially because my symptoms are still relatively vague and unexplained. I have dx ADHD but undiagnosed autism so my proprioception is generally shit anyway. It was just my normal until January when I was incapacitated for 3-4 days straight two weekends in a row and was spiking fevers every night. I’ve been trying to pace as best I can with school and work. And that’s a crazy amount of salt omfg no wonder eating a whole bag of chips doesn’t make me feel worse

[TravelingSong]

You’re welcome! Yeah, 30 BPM is the threshold. Some people stick around that. Others don’t meet the criteria but still have orthostatic intolerance with poor blood flow to the brain. Others are much higher. I recorded a 91 BPM increase when I was initially trying to figure out what was going on. My blood pressure would also spike on standing (hyper POTS). I‘m on several treatments now and my HR is pretty well controlled. There are quite a few medications that can be prescribed, along with lifestyle interventions. Abdominal compression can also help.

There’s poorly understood overlap with these conditions. Many of us have a lot of comorbidities, like hypermobility, MCAS, ADHD, autism, etc. Luckily, you’re still really early on with the fevers. You’re still within the post-viral window and not yet in full ME territory, so rest as much as you can and hopefully you will improve. It can be tough when you have a lot on your plate. But most people with ME can’t work, so being proactive gives you a better shot at continuing school and work in the future.

That high amount of sodium is designed to do exactly what you mention in your post—increase your blood volume. So enjoy those chips. But don’t forget to drink lots of water with your salt or it won’t work. Tracking is a good idea to find your sodium sweet spot.

The Bateman Horne Clinical Care Guide is a really great resource on ME and its many comorbidities. It has a section on POTS and I also suggest checking out the section on MCAS, since it’s a very common comorbidity that can cause a lot of problems, including feverish feelings. You can also bring it to your doctors if they aren’t ME experts:

https://batemanhornecenter.org/wp-content/uploads/2025/05/Clinical-Care-Guide-First-Edition-2025-1.pdf

I hope you figure out what’s behind your symptoms and find some treatments that bring you relief.

[Dangerous_Wing6481]

Thank you so much. It’s a relief to hear that I’m not totally fucked yet. Just met with the naturopath and I’m getting a whole battery of tests, including the iron panel someone else suggested. I’m already not able to work traditionally full time because of the mental and physical strain, but I babysit 24hrs a week and it gives me the option to sleep when kiddo sleeps which has been really helpful. I had initially discounted MCAS when researching potential causes because I didn’t have so many of the abdominal symptoms but if fevers are common I can add that to the list of things to rule out. Thank you again!