Paradox: pacing is making me worse, not pacing gives me PEM...

[CSMLSM]

So you've recovered after 40 years of illness, that's quite extraordinary! So are you saying that EBV was the cause of your illness? I haven't done much research on EBV, but I agree it could well be the at the root of the illness, at least for some people if not everyone.

I am not sure but yes it does seem to be the culprit. The thing is many pathogens cause immune dysregulation and as one takes residense others find a niche to fill from that dysfunction and snowballs down from there so it is the dysregulation of the whole bodies microbiome that causes the dynamic variation in us all.
The treatment I do brute forces homeostasis to over come the immune dysregulation and get the immune system to recognise and tackle more of these pathogens. It also puts your body in a more natural homeostasis state (healthly state).

 

[vision blue]

I
The treatment I do brute forces homeostasis to over come the immune dysregulation and get the immune system to recognise and tackle more of these pathogens. It also puts your body in a more natural homeostasis state (healthly state).

Sounds great But how ? Perhaps younput itvelsewhere and yours may have been the list where i know everything on it was contraindicated for me or otgerwise made me worse

Are you also the one with the feral fox visitors? Inposted on another thread that id very much lije to no more qnd asked a few specific questions if yku ever have the energy, time, and inclination to adreess that furthet.

 

[CSMLSM]

Sounds great But how ? Perhaps younput itvelsewhere and yours may have been the list where i know everything on it was contraindicated for me or otgerwise made me worse

Are you also the one with the feral fox visitors? Inposted on another thread that id very much lije to no more qnd asked a few specific questions if yku ever have the energy, time, and inclination to adreess that furthet.

Last bit was abit confusing, sorry are you saying you have asked me questions before but I did not answer if so I am sorry.
I have posted around PR and am getting explanations about specifics clear as I go as my memory is still coming back. It is complicated and I am having to relearn alot of lost knowlegde.
If you ask on any of my threads a question, as long as I see it I will answer it for you the best I can. I now even be able to link a specific answer from something I have already posted.
How recent did you ask?

 

[Davsey27]

Pacing in areas where the home base is in an area there is too much Mold/outdoor toxins seems to make things worse . Pacing in better environments seems to help

 

[Husband of]

This is an interesting thread. I am surprised by what many are saying.

Now I don't know what my wife should be doing.

Because she has only been Ill for 17 months I thought she might still have a chance of recovery by aggressive resting.

But this thread seems to suggest that would be a bad idea.

 

[hapl808]

This is an interesting thread. I am surprised by what many are saying.

Now I don't know what my wife should be doing.

Because she has only been Ill for 17 months I thought she might still have a chance of recovery by aggressive testing.

But this thread seems to suggest that would be a bad idea.

I would say no one has a clue - we're all guessing. Experiment carefully and observe reactions over a period of days. I desperately wish I hadn't tried to push through when I was moderate - directly led to a decline to severe. Not sure about 'aggressive' pacing, but when I was moderate and still trying to make it to the gym, travel, etc. All likely a mistake.

 

[Wishful]

Because she has only been Ill for 17 months I thought she might still have a chance of recovery by aggressive resting.

As hapl808 says, whether resting will help is just a guess. You can think "maybe just one more day is required to see improvement", but maybe it's 10,000 days and still no improvement. The problem with the "might need to try it for 2 or more years" experiments is that you can't do all that many of them in a lifetime. I tried a lot of different experiments in my first few years, and quickly learned what didn't work quickly--and a few that did work quickly. That doesn't prove that 17 months of some treatment wouldn't have worked, but I have no evidence that any of the long-term treatments were any more likely to succeed than the 'try it for a few days' ones.

So, should she continue aggressive resting? My guess is that rolling some dice, consulting an ouiji (sap?) board or an astrologer, or any other effectively random decision-making method will provide equally valid decisions. Maybe ask her whether she wants to continue that, or whether she'd be happier trying to do something more active. Her decision, rational or not, based on evidence or not, is probably more valid than random chance.

 

[wabi-sabi]

Let me chime in with the voice of cynicism...

Most of us don't ever recover from this illness. We learn to manage it. Looking for recovery will be fruitless. Look for something that helps you live well with the illness. For me that's staying in bed a lot and using a wheelchair when I go out. I balance staying in bed enough to prevent a crash with not staying in bed so much all my muscles dissolve.

 

[Husband of]

Let me chime in with the voice of cynicism...

Most of us don't ever recover from this illness. We learn to manage it. Looking for recovery will be fruitless. Look for something that helps you live well with the illness. For me that's staying in bed a lot and using a wheelchair when I go out. I balance staying in bed enough to prevent a crash with not staying in bed so much all my muscles dissolve.

Sure but most people say that you have a better chance at recovering the earlier on in your illness. So, I'm here hoping that 17 months is still earlyish and therefore my wife has a greater chance of recovery than someone who has had it for say five years.

therefore I am hoping that trying to recover is still a valid strategy.

and I often hear that resting is the best method of recivery, if done early, before it's too late. But this thread potentially contradicts that, or it might be that once your at the point that resting makes you worse, then you are at the point where recovery is a lost cause.

Certainly i take from what you are saying that it's already clearly too late to bother with that.


@Wishful sorry I wasn't saying she has been aggressively resting for 17 months, I was just saying she has had MECFS fro only 17 months and so I had hoped aggressive resting might still give her a chance of recovery

 

[wabi-sabi]

therefore I am hoping that trying to recover is still a valid strategy.

I will hope along with you!

 

[Rufous McKinney]

So, I'm here hoping that 17 months is still earlyish and therefore my wife has a greater chance of recovery

Your wife is very lucky to have you, and the ongoing support and advice.

My husband is rather obsessive about health matters, but has chosen to not engage in my saga. I've had to get past expecting him to engage. I understand this, and its OK. I have to be realistic.

 

[Wishful]

Sure but most people say that you have a better chance at recovering the earlier on in your illness.

I'm not sure whether that's actually valid. Some people might have ME that goes away early, regardless of whatever treatments or lifestyles are tried. Others might have ME that responds better to treatment, and they manage to find that treatment early rather than late. Other people have ME that sinks its nasty claws in and refuses to let go. I'm unaware of any properly-done study that shows that early treatments, whether aggressive resting or whatever else, is effective at reducing long-term ME severity. Given the lack of a marker and effective measurements of symptoms, I don't see how anyone could provide reliable statistical evidence.

Does ME 'dig its nasty claws in deeper' the longer the victim goes without practicing pacing, aggressive resting, avoidance of factors, etc? I don't know, and I doubt that anyone else does either, since we don't know the mechanisms involved.

I still think the question about whether aggressive resting will be better than not practicing aggressive resting is just a coin flip: 50/50. Aggressive physical exertion is more likely to cause harm, but isn't guaranteed to be not effective as a treatment. No guarantees anywhere.

FWIW, on my morning walk AI was thinking about this thread and I couldn't remember any of my experiments with avoiding factors for a long period that had a long-term beneficial result. I avoided some foods for a couple of years, and was able to consume them safely again, but was that because I avoided them or just a change that would have happened even without avoidance? I'm back to intolerance of some of those foods again, so I think it's just how ME changes over time. ME is a disease that you can't make long-term projections about.