Discussion in 'ME/CFS research' started by Andy, Sep 29, 2018.
Open access at https://sajp.co.za/index.php/SAJP/article/view/442
I'm looking forward to other testing, such as, what is the effect on HRV of hamburger consumption for PwME.
I mean really, even assuming the result is valid, which my experience would suggest it's not, what do they want us to do, live, and work, in a bath of warm water?
When was that decided, I must have missed the announcement.
Edit: Beat me to it Wonko
Tiny study, a few barely 'significant' results cherry picked to mention in the abstract. And how long did the effect last?
I see it's a preliminary study, so they were looking for something they could claim as 'significant' to justify doing a bigger study, rather than anything meaningful.
I don't know what they would like us to do but a long hot bath (with some salt in it, idk if that is relevant) is something that has rarely failed to give me roughly half an hour of useable time afterwards and a significant temporary reduction in subjective pain levels. It is impractical for more than daily application (or maybe twice a day if you don't have problems with dry skin, for me it also takes a while to overcome the initial drop in BP) but I would not want to miss that tool. I have no idea if my reduction in brain fog is related to a change in HRV btw, I just know I can at least watch some TV for a bit.
It also has become more useful for me as my illness has progressed more towards the severe level, but I am still well enough that I can take a bath without help.
If we could figure out why it works reasonably well for me (on most days) and maybe doesn't for others, I feel like there is some insight here to be had.
On the other hand I have an idea why it has the opposite effect on me, it causes my HR to climb, above 140, and my blood pressure to drop. The combination causes issues both in the bath and when standing up afterwards.
But I'm happy to accept that I may be a freak
That makes two of us.
I think it does the same thing to me, it just takes 15-30 minutes to swing back the other way around and suddenly the brainfog lifts for a while! I can't get out initially anyway, but either I am big enough or our tub is small enough so I don't have drowning issues...
I don't really want to encourage anyone to spend days playing around with this (I can see how it can backfire), but just sayin' it works for me.
As to the study at hand, it says they measured after 5 minutes and post-immersion, but I can't make out how long they left the people in the water. I also would like to see measurements taken shortly post and perhaps 30, 60 & 90 minutes post or whatever makes sense for the full study (if this was indeed just a preliminary run) and to take note how severe their cfs cohort is symptoms-wise.
Sometimes a hot bath makes me feel significantly better, sometimes much worse. It does help with pain while i'm in there, oh god it feels so good! and afterwards for about 30-60mins i do find it all around quite 'reviving' even if it exhausts me. What i mean by that is even if it uses up what little strength i had left & leave me barely able to stand up never mind walk, I still feel more comfortable once back in bed, than before hand. But that has always been my experience with flu/infections - that the best relief is in a hot bath. And so when my symptom set is most 'fluey' it works the best.
However sometimes it makes me feel massively worse, which is interesting based on what you say @Wonko because when it makes me feel awful the HR increase is really noticeable - racing, racing heart & nausea & headache. I have noticed that it has this effect when my symptom set is most 'weird' - what i mean by that is tingling sensations in extremities, numbness, goosebumps moving across scalp, utterly bizarre proprioception (hanging upside down/legs bent back under body/arms above head - even though i know for a fact im laying flat on back with legs straight & arms across belly), & muscle rather than joint pain, plus substantial confusion & disorientation. - Having a bath while like that is a bad idea, but because it's all in addition to the 'fluey-ness' i will end up doing it to try to relieve the flu feeling because i'm too confused to work out that it's not a good idea.
I do wish the science would progress so we could understand what the crap is going on in our bodies.
<and before any uneducated visitor to S4ME thinks to themselves those latter symptoms i describe can come with anxiety.... a) feeling anxious improves all my symptoms & b) a warm bath is very relaxing to me, so why would it make my heart suddenly start racing?
(Foggy head, I may be missing something...?
They didn't collect data on how this change in heart-rate affected the ME-patients? Not during, directly after or the following day.
Then they can't conclude this to be a possible treatment, without measuring anything else then the change in heart rate itself. What did it to do to patients?
Rising my core body temperature and rising my heart rate would make my really sick, PEM crashing.
@Andy it's an open access article
Thanks, I'll amend my opening post.
True, they measured
So they only measured objective things.
They say in the background section
so it is essentially a fact finding study.
Now, anecdotally, I have always found baths far more comforting when compared to showers (so long as the water is a comfortable temperature), so I wonder if this study is describing what happens to me.
The difference in HRV between controls and most patients is explained by lower levels of fitness and activity levels. The fact that HRV was normal after warm water immersion suggests there is no fundamental autonomic dysregulation.
It's interesting how the same set of results can lead to two opposing conclusions right?
Yes so much so that as long as I’m feeling well enough to get in and out of the bath I have a bath with Epsom salts every day in the morning to help relieve that all over aching fthat’s at its worst for me in mornings. I try to take it steadily though and have a rest after the bath wrapped in towels to dry off rather than use energy actively drying.
Ah, that's the important little bit I was missing - thanks
I still think it's strange they didn't include at least one datapoint, to get at idea about if it might be beneficial to patients or not. Also find the conclusion misleading, : "
Clinical implications: Warm water immersion appears safe and may be beneficial in the management of individuals with CFS."
Since they don't know what the treatment did to patients, only that HR and BP didn't go to dangoures levels - for healthy people
But I guess this is my answer, their plan is not to have ME-patients do hot baths - they want to combine GET and warm water, and make patients exercise in water. So they assume if patients can take the temperature rise, they are going to benefit?
Wasn't there a paper a few months batch on pool exercise, and it was concluded that it was likely to be a bad thing?
It seems obvious. How can "scientists" be so wilfully dim?
High sodium hamburger consumption is good for HRV, so therefore good for pwME. They should conduct prior hamburgerism and post hamburgerism if they want to be serious about autonomic dysregulation.
My body temperature is always low so I used to take a bath to heat up. Like others it also helped the pain. But as I got worse, the physical effort of getting into a bath negated any benefit even with an electric bath seat so I had to give it up.
In fact, after a few years of having to use baby wipes because I could not use a shower over the bath either I got a wet room so I can sit down and be washed, so no bath available anymore, sigh.
So their experiment does not account for the effort involved. Basically, if people with ME can cope with using a bath and it helps, fine, if it makes them feel worse don't do it. What a waste of research money.
I had a bath this morning and it made my nose bleed. Bet they haven't got anywhere put that in their data.
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