Saline infusions

[Sean]

Also, asking patients with the experience that ME patients have had of sustained extreme focus on the (alleged) psychological component and pressure to report a good outcome is going to be fraught with difficulties, to put it mildly. About as problematic as it gets for obtaining reliable results.

 

[mango]

If there is actually atrial going on it would be useful to know. But if this is just open label treatments then there is the usual problem of expectation bias. 'Feeling better' is ultimately what matters in ME/CFS, and we have nothing else to measure, so I am not sure in what sense it would be 'more than'.

As a person living with ME, I have to disagree with your statement that 'feeling better' is ultimately what matters.

To me better function, that my body is actually functioning (a bit closer to) properly, is much more meaningful to me than 'how I feel'.

I can still 'feel' absolutely shite as in fluish, nauseous, knackered and as if I've been concussed and/or hit by a bus or three, but if my very severe OI for some reason is less bad, meaning I can for example walk to the bathroom and brush my teeth without fainting, or walk to the kitchen to get a glass of water without getting horrendous presyncope that forces me to immediately lie down on the floor to avoid fainting, or if it allows me to sit up in bed long enough to eat a meal -- that ultimately matters much more to me than 'how I'm feeling'.

To clarify, from my perspective it's about my body actually functioning better (less badly). This is what ultimately matters more to me, and it's also what literally helps keep me alive. I still feel absolute shite, no change there. But days or moments when my body is functioning a little bit better than other times, that's what makes all the difference.

Also, in my case it's actually easily measured with a regular blood pressure monitor.

I'm obviously less severely affected than Maeve was. I'm just speaking from my own experience.

I've never had the chance to try IV fluids. But using for example compression stockings and oral rehydration fluids like Resorb do make a (small but noticeable) difference for me both in function and on the blood pressure monitor's data, especially when measuring orthostatic blood pressure.

I've seen return to work used in studies to measure function and treatment effects, that's why I picked that as an example (instead of listing reported symptom related improvements) in my previous comment when referring to the improvements people have anecdotally reported.

And yes, obviously we are all hoping the doctor prescribing the IV fluids that I mentioned in my previous comment will publish on it. He has done and published scientific studies before, so we will just have to keep our fingers crossed and wait and see. It's still early days.

 

[Turtle]

What I mean by feeling better is all the time. 'PEM' is just not feeling better after exertion. That counts. So yes we have to find a way of dealing with what stops people feeling better all the time but to me that is not PEM. PEM is the result of whatever that is.

If the people taking IV saline are going to work and crashing that is clearly not a recommendation for IV saline.

Rather not well enough to work (yet), but IV saline at least seems to work, must be worth trying then. Isn't that what @MelbME is plans to try?

 

[alktipping]

‘Feeling better’ is no doubt a good thing, and I would be happy if I could feel better all the time, but that is not enough. I could ‘feel better’ a lot of the time if I could get enough rest and avoid PEM and avoid anything else that might trigger PEM such as being upright or light or sound, as could everyone with ME who is not at the severe/very severe end of the spectrum.

Presently my life is a continuous struggle to find a balance between not feeling awful and to actually live some form of life.

What I really want is to be able to do more and not to be made worse by activity and hypersensitivities. I suspect if I ‘felt better’ without having a treatment for PEM, I would increase my activity until I crashed. I suspect ‘feeling better’ by itself would be a dangerous gift, that for me activity levels and activity patterns are ultimately the primary measure of improvement not ‘feeling better’.

This we need more than a reduction in symptoms to regain some semblance of living rather than just enduring.

 

[Chandelier]

IV Fluids and Long COVID: Why Saline Helps Some People and Hurts Others

Do IV fluids help Long COVID? Learn why saline infusions improve symptoms for some people with POTS and dysautonomia but worsen them for others.

longcovidjourney.com

1900-word article (without counting the FAQ)

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Why IV Fluids Help Some Long Covid Patients and Harm Others​

​

Table of Contents​

• What the research actually shows
• When IV fluids tend to help
• When IV fluids can make symptoms worse
• Microcirculation and capillary rarefaction
• Kidney and electrolyte sensitivity
• Why the benefit often fades quickly
• Where viral persistence and antivirals fit
• A more useful way to think about your response
• Safer and more sustainable approaches
• When to ask for extra support
• Why Patients Report Such Different Experiences
• Frequently asked questions
  • Why do IV fluids help some people with Long COVID but not others?
  • Why do I feel worse after IV fluids rather than better?
  • Should I avoid IV fluids if I have Long COVID?
  • Why does the benefit from IV fluids not last?
  • Are oral fluids a safe alternative to IV saline?
  • Is this related to POTS?
  • Do IV fluids treat Long COVID itself?
  • Why might my blood volume be low even though my blood tests look normal?
  • Do antivirals help with Long Covid symptoms?
  • What is endothelial dysfunction and why does it matter here?
  • Is it safe to use IV saline regularly for Long COVID symptoms?
  • How do I know if IV fluids might actually help me?
• Sources and further reading
• Disclaimer

---

Looks like biobabble à la discrétion.

Spoiler: About LongCovidJourney.com

WHO WE ARE

We are a small anonymous team connected by one shared purpose. Some of us live with Long COVID. Some have healthcare experience. All of us share the same goal: helping people make sense of an illness that rarely comes with simple answers. Together, we created the resource we wished had existed when our own questions began.

We know what it’s like to search for answers late at night, to read a research paper without understanding what it means, or to wonder whether anyone else feels the same. LongCovidJourney exists to make those moments a little less confusing.We are not a medical provider or a research institution. We are an independent educational resource built around one belief: people deserve to understand what is happening to their bodies.

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The information published on LongCovidJourney.com is intended for educational and informational purposes only. It should not be considered medical advice, diagnosis or treatment. Long COVID and related post-viral illnesses vary considerably between individuals. Medical decisions should always be made in consultation with a qualified healthcare professional who is familiar with your personal medical history.