How I improved from very severe to moderate in 14 days

[JES]

just in terms of the logical reasoning process

i was under the impression that most of the accounts of people improving after sleep deprivation - were along the lines of people feeling somewhat better for a day or 2 after a night of shorter sleep.

i think it wise to draw a distinction between that effect - which many people experience - and what Martin experienced - which he describes as going from bedbound to almost normal functioning lasting for 2.5months.

logically it would be unsafe to assume these are the same phenomenon - or due to the same mechanisms - however appealing that may be.

You are correct that improvement from mild ME/CFS is quite different and much easier to achieve I think than from moderate or severe ME/CFS.

However, using the same logic, it would make sense for someone with milder ME/CFS like myself to experience improvement from sleep deprivation more easily with just one night of not sleeping. For someone with moderate or severe ME/CFS like Martin, it would also make sense that the sleep deprivation would need to be over a longer period to make a difference, which sounds consistent to me.

I don't see an inconsistency here, but the bigger problem is to figure out some other way to replicate this treatment effect rather than not sleeping for extended periods. I have co-incidentally also trialed tDCS with a home device. I could not find a way to use it (with the various mounting positions) that would help me and it actually seemed to worsen some of my symptoms over time.

On the other hand, I experienced a day of quite notable improvement years ago after having a brain MRI done. This would not rule out at least that "brain chemistry changes" could be enough to trigger remission in my case. Then again I also experienced dramatic improvement after getting a cold or flu, which would point more towards immune dysfunction. Yeah, it's not easy to figure this out, but it would certainly be nice if ME/CFS could be solved for a subset at least with just "brain chemistry" or "hormones", as immune dysfunction seems more difficult to solve.

 

[Garz]

@Garz thanks for the tramadol info! I know of people who feel better on it (it helped me overcome the terrible pain and inflammation in the first days of sleep deprivation without debate).
But most of my improvement was off the tramadol - it must have been out of my system a long time ago.

I think that my sleep deprivation was so serious for the body that it also reacted seriously - this cannot be compared with a short deprivation that will bring improvement for 1-2 days (some people report this type od short-term improvement).

If my improvement was while taking tramadol and stopped after stopping - that would be clear, but the story is quite different. :-/

So far it seems to me the most likely:
- brain chemistry changes
- metabolic changes
- hormonal changes
- immune function change

Hi Martin
perhaps hadn't explained my thought process fully

as clarification, i wasn't suggesting that the tramadol or any other drug was in your system 2.5months later - that is clearly not the case

i was suggesting that some down stream effect from the tramadol or other drug may have been lasting long after the drug itself had left the system.

many drugs are known to have these type of effects - just in my recent unrelated reading i have come across two.

naltrexone - is an opioid antagonist that binds and blocks opioid receptors in the brain temporarily - in low doses it stays in the body for only a few hours - and the body is thought to respond by upregulating the endogenous opioids and opioids receptors ( this one is interesting as Trammadol also acts as an opioid receptor antagonist)

other non-opioid related drugs are known to have effects lasting months after administration - long after the drug is excreted - for instance the antiparasitic Ivermectin is known to prevent parasites from recolonising hosts for over 6 weeks after administration - even though the drug is excreted within a day or so - here the mechanism is thought to be some modulation of the host immune system.
This demonstrates an effect in the same order of months after administration of your own experience.

these are just examples of two well known drugs without doing any digging into it - so i am sure there are others - but often these off target or secondary effects are not well researched as they tend to be outside the purview of the original drug trials - so tend to get discovered by accident.

anyway - this was my thought process

i can quite easily understand a person feeling a little better after a short night of sleep - i have experienced this myself on occasion - which could be explained by mild suppression of the immune system and increase in cortisol that is known to occur after even one nights poor sleep.

this could result in reduced symptoms as the hosts immune system is fighting whatever its upset about a bit less for the following day - but like you i think it unlikely that this is the same mechanism that could cause a near complete remission for over 2 months.

i hope its of some help

 

[bad1080]

naltrexone - is an opioid antagonist that binds and blocks opioid receptors in the brain temporarily - in low doses it stays in the body for only a few hours - and the body is thought to respond by upregulating the endogenous opioids and opioids receptors ( this one is interesting as Trammadol also acts as an opioid receptor antagonist)

the main half-life of naltrexone is in the range of 4h but there is another metabolite which has a half-life of 12-14h, so it stays in the body for much longer than a couple of hours. i don't wanna scare people away from it, just give them the full picture so they can make an informed decision.
also the upregulation of the endorphins is just one of the suspected modes of action, another is the immune-modulation of the glia cells in the brain (which are likely stuck in "attack mode" in people with me-cfs) and another is from it being a prokinetic so it has positive effects on the motility of the gut.
currently there is research being done into dextro-naltrexone (but funding is difficult, what else is new) an isomere which can not bind to the opioid receptor, taking those side-effects out of the equation as they have considerable overlap.
i was wary of the reports of side-effects myself but in the end i am glad i gave it a try.

 

[serafim]

how long have you been v severe before improving?