Why does it take years to move down a level of ME?

Is this more likely due to an immune system problem?

For me there came a point where after many years with very severe ME where resting finally helped to move me down a level.

I am now over 25 years into ME and would describe myself as moderate with the very odd severe bout. I have a resting routine where I lie down in the afternoon and evening every day apart from the odd time where I may have an appointment. I should add if home in the morning I will be found sitting upright/lying down in bed throughout the morning as well. This is how I manage to stay at this level of moderate.

If I were to increase activity every day I would eventually deteriorate back to severe again. I know this because I have lived with ME for many years and know how it operates.

What systems in the body would act like this where improving takes so long, years and years?
And why there is so much absurd amount of resting required to improve levels of ME.

 

For me, I had some improvement in the initial years, but it's been a slow but steady decline since then (including new symptoms). I'm not sure (specifically) what really accounts for the improvement, but I'd like to blame age and subsequent infections on the steady decline, even if it isn't true.

 

@Snow Leopard I wonder the impact on the ME for men when their testosterone levels drop as they get older. I don't know how old you are. Do men feel a greater depth of immune-induced like weakness in ME or notice any other change.

 

I am not sure that resting does lead to improvement.
From my own story ( improved for a few years then much worse) and that of friends, ME seems to have a mind of its' own and is different in everyone.

 

I feel this way at moderate level. I don't feel like I am getting improvement now, just holding.

 

Aging could also impact (in positive or negative way) if the change is observed over several years or decades. Naviaux observed how a person's metabolism is very different in their 20's or 30's compared to later in life. The immune system is also changing over the years, which is one reason why vaccines work better in young people. Normally these things get worse as you age, but I wonder if there's a chance that aging would do something positive to our wonky immune response. Seems like a small chance, but over the years I've noticed so many weird things with this disease that it wouldn't surprise me.

 

Who knows what controls the level of severity and the fluctuations in levels of health, setting aside the exertion-related crashes? We still do not have a mechanism of illness.

 

In the earlier years when I didn't have orthostatic impairment I was able to stay upright with no problems, read books, knit etc. I was even able to tolerate hot temperatures. I still needed adequate rest in between 'activities' but I wasn't as disabled as I am now with OI/ME.

I feel much better in the evenings if I rest adequately during the day. What I can do in the morning and evening is like having two different illnesses it seems.

I'm hoping with all the awareness being brought up with post-covid and autonomic issues will help us all in this area.

 

How do you make sense of a chaotic system ? How do you make sense when comparing separate chaotic systems ? 5 dimensional multi directional Jenga anyone ?

Age and aging in ME/CFS is (yet another) unexplored area and it's certainly reasonable to postulate that maturing in the young, or growing older in adults could impact the pathophysiology of ME/CFS in individuals. Amelioration of ME/CFS correlated with aging would be a significant finding; but would it be a function of maturation/senescence or merely the passage time ?

An earlier post on this: https://www.s4me.info/threads/decodeme-uk-me-cfs-dna-study-underway.15604/page-30#post-353267

 

Forced 'resting' actually made my ME worse. That was the only time I've ever had a decline in my ME symptoms (other than from the covid vaccine).

 

As a measure of how complex these questions are, it was long considered that far from being a support for the immune system, high levels of testosterone were an immuno-suppressive, if that were true, and if immune response did play a role in ME/CFS then one would expect male patients to see improvements as they age.

I don't know what the current thinking about testosterone and the immune system is, and we probably don't know enough about the patient population to say whether there's any indication that male or female patients experience age related worsening or improvement.

As an N = 1 my experience is of stepped decline, from my 30s to mid 60s with a substantial downward drop in my 50s coinciding with onset of secondary hypothyroidism. My own view is that any given hormone measure will be unlikely to help much in understanding ME/CFS, and if the endocrine system is involved it'll be via understanding of the role of the whole system and not discrete bits, that provides any progress.

 

My illness has become more challenging since menopause.

 

I was like that for the first couple of years but then everything ME wise went back to pre-meno levels.

 

I think exertion triggers an inflammatory process in the brain for some people Rosie.

If I rest I avoid the inflammatory process which produces neurological symptoms and makes one's brain feel like a burning cauliflower.

It initially takes time to subside which is about three days but then there is an inflammatory residue of some sort, possibly glial cells in a defensive mode or something like that which takes time to unwind and for the inflammation to reduce, months, comparable to the healing of a wound perhaps, still leaves a scar.

I also think there is a behavioural element, in that one at first does not know how to rest properly and relax and so still think and act in ways that make it worse.

I think I have learned unconsciously how to behave and use my brain differently, when I can afford to think and when not to bother.

So when new to the game its easy to continue to precipitate the inflammatory response, having learnt the ropes it is possible to spend longer without inflammatory episodes caused by push crash, what I think you are calling down a level. Really its about consistent pacing and living inside the glass cage. It can feel better but I know if I push it, it pushes back.

 

Thanks everyone for your thoughts. I want to come back to this thread but need to take a few weeks break from the forum shortly. Thanks again.

 

My suspicion is this is correct. Resting is about not getting worse, while healing is probably about other things.

If you don't have enough rest then the healing processes would have to overcome the disease faster than you are deteriorating.

The caveat is that we still don't know enough to be sure about any of this.

PS We also have to guard against resting too much. Muscle can be reconditioned, but weakened bone is much harder to deal with. This is a marathon on a tightrope over an abyss.

 

This!

 

I don't know what your experience was but I found some strange effects which did not fit with ME's usual path until I read about the way that people with ME use adrenalin to do more. (That is a short phase that may not be accurate as it has not been researched but it is close and would make sense)

I was given a relaxation tape by my GP but when I lay down and used it I felt much worse to the extent I could barely move. Another time I missed my bus so I had a lie down and was barely able to get out of bed for the next few days.

But when I took the "adrenalin effect" into account it all made sense. If I rested I dropped to my actual ability rather than the overclocked state I had been in.

Nowadays, I use the effect occasionally to be more normal like at Christmas and use resting to see if I have slipped into it unnoticed and I am much more aware of the signs so I don't overdo things accidentally.

If you have been doing much more than your base ability then resting could overlap PEM and it would appear that it was the resting when it was actually what was done before that was the problem