Are ME relapses like MS relapses?

[AdamS]

I don't know a great deal about MS admittedly, but from what i've read, relapses usually involve an exacerbation of symptoms followed by either a slow recovery/remission or sometimes a permanent worsening. This is thought to be due to damage to the myelin sheath (caused by the immune system). I couldn't help but see some similarities with the symptom exacerbation experienced in ME/CFS here.

Is it conceivable that a similar thing happens during major ME relapses and even PEM? (not necessarily myelin shealth damage but some other damage, which isn't reversible in some/many cases)?

I'd say that I was gradual onset and ME crept into my life slowly, before a seriously bad 'relapse' at the gym which changed my baseline from about 85% to 30-40% functioning in a matter of hours. I always wonder what could have happened so rapidly in this timeframe that affected my physical/cognitive functioning so acutely. The fact that my executive functioning/information processing abilities etc haven't improved makes me wonder if the damage is permanent.

Anyway, interested to hear your thoughts!

 

[arewenearlythereyet]

I am hoping that it isn't permanent. I do sometimes worry that I spent at least 6 months before my diagnosis just crashing and burning constantly. I guess until we know the cause and mechanics for the symptoms it's difficult to know how a treatment could work or what the prognosis will be. theres no reason at this stage to think that it won't be completely reversible for everyone. That is my hope, but it's probably best to prepare for a degree of management rather than an outright cure. My optimistic view is that I will be able to throw all my supplements away and just take 3-4 pills a day and get back to 90% with no restrictions or pacing.

 

[AdamS]

My optimistic view is that I will be able to throw all my supplements away and just take 3-4 pills a day and get back to 90% with no restrictions or pacing.

That would be the dream!

 

[boombachi]

I had a gradual onset and steadily worsened for a period of about 3 or 4 years. I have gradually improved since then but there is still a cyclical nature and I have gone back and forth in terms of my baseline. Sometimes improvements have been due to reducing activity. Other times it seems my capacity for activity genuinely improved. During the good times I tend to think I am cured until I overdo it and crash. when I am bad I get very down and feel very negative about prognosis.

I know 2 people with MS. One has relapsing/remitting and during a relapse she suffers with fatigue, paralysis etc... in remission she goes horseriding and waterskiing. The other person I know has progressive MS and gets progressively worse so there are similarities with the course of the illness in that some are severely affected and have no remission and others fluctuate.

I am currently experiencing what I can only describe as remission as I have no brain fog and my activity band registered nearly 8000 steps yesterday. I am tired (seriously u fit and trying to fit in everything at once) but not crashing. I am saying this to evidence that in my case I don't think anything is permanently broken. I know this is not much comfort to those stuck in bed not experiencing this and we all know what works for one is not a cure all. I hope it gives you some hope that this can be fixed. The rituximab responders also show that function can be restored.

 

[Jonathan Edwards]

I don't know a great deal about MS admittedly, but from what i've read, relapses usually involve an exacerbation of symptoms followed by either a slow recovery/remission or sometimes a permanent worsening. This is thought to be due to damage to the myelin sheath (caused by the immune system). I couldn't help but see some similarities with the symptom exacerbation experienced in ME/CFS here.

Is it conceivable that a similar thing happens during major ME relapses and even PEM? (not necessarily myelin shealth damage but some other damage, which isn't reversible in some/many cases)?

I'd say that I was gradual onset and ME crept into my life slowly, before a seriously bad 'relapse' at the gym which changed my baseline from about 85% to 30-40% functioning in a matter of hours. I always wonder what could have happened so rapidly in this timeframe that affected my physical/cognitive functioning so acutely. The fact that my executive functioning/information processing abilities etc haven't improved makes me wonder if the damage is permanent.

Anyway, interested to hear your thoughts!

I think MS is quite different in that each relapse involves aifferent area of brain so new symptoms are different each time. One relapse may produce weakness in one leg, the next loss of vision in the right eye etc etc. I have not heard of anything suggesting relapses in ME are explicable on effects in different brain areas in that way.

 

[Jessie 107]

I had a gradual onset and steadily worsened for a period of about 3 or 4 years. I have gradually improved since then but there is still a cyclical nature and I have gone back and forth in terms of my baseline. Sometimes improvements have been due to reducing activity. Other times it seems my capacity for activity genuinely improved. During the good times I tend to think I am cured until I overdo it and crash. when I am bad I get very down and feel very negative about prognosis.

I know 2 people with MS. One has relapsing/remitting and during a relapse she suffers with fatigue, paralysis etc... in remission she goes horseriding and waterskiing. The other person I know has progressive MS and gets progressively worse so there are similarities with the course of the illness in that some are severely affected and have no remission and others fluctuate.

I am currently experiencing what I can only describe as remission as I have no brain fog and my activity band registered nearly 8000 steps yesterday. I am tired (seriously u fit and trying to fit in everything at once) but not crashing. I am saying this to evidence that in my case I don't think anything is permanently broken. I know this is not much comfort to those stuck in bed not experiencing this and we all know what works for one is not a cure all. I hope it gives you some hope that this can be fixed. The rituximab responders also show that function can be restored.

 

[PennyIA]

I've been experiencing relapsing/remitting symptoms for a long time. But even during my best remission periods, I was still probably only around 75% of my former self or what can be expected for a 50-something woman. I still had to monitor my activity levels in the hopes of preventing crashes that would lead to a relapse. I could have a small 'crash' where I over did something. Which would make me overly tired for about a week... but as long as I kept those to a minimum I wouldn't tend to relapse (until who knows what would kick in and I'd get more and more tired every day until I can't work any longer).

That's not how I've heard people with MS describe their relapse/remitting patterns. When they are in a remission period, they are usually 100% or even 110%. Even when they are in relapse, they may have some paralysis and some fatigue, but they seem to have a higher quality of life during their relapses than most of the relapses I've had or that I've seen others describe.

 

[Jessie 107]

Mine was also gradual onset, I unfortunately kept on pushing myself. Now I can't walk very far without bringing on PEM, I'm still having flare ups every week no matter what I do!
You are doing well to be able to do 8000 steps, I can only dream of that now.

 

[boombachi]

Mine was also gradual onset, I unfortunately kept on pushing myself. Now I can't walk very far without bringing on PEM, I'm still having flare ups every week no matter what I do!
You are doing well to be able to do 8000 steps, I can only dream of that now.

I know and I wish I could bottle it and pass it round. I said it to emphasise the point I was making but I realise that for some hearing this is like rubbing salt in their wounds.

 

[Marco]

As Jonathan said MS lesions are random and affect different areas of the brain and hence different symptoms. When I crash the 'neurological' symptoms are always the same, right leg starts dragging (never injured) and then everything shuts down.

 

[Basilico]

As it's been explained to me by various neurologists, each MS relapse causes some damage that then results in scar tissue. No one particular attack is necessarily a long term problem, but the cumulative effect of many relapses each contributing additional scar tissue is what eventually leads to long term disability, like paralysis.

I am diagnosed with MS. At first, I was told it was relapsing/remitting, but I've never had a true relapse or a true remission, but I also certainly don't have the progressive form. As time goes on, I become more convinced that I actually have CFS/ME, because my symptoms make more sense when viewed from that diagnosis.

You pose an interesting question. It is common that many people in the early stages of CFS/ME push themselves too hard and get into a cycle of crashing, which then leads to a permanent state of disability they don't seem to recover from. But, it's still unknown what exactly is causing that, so it's hard to say that it's irreversible. Seeing some of the dramatic improvements Goldstein was able to get in short timeframes, I'm leaning toward believing that damage done from PEM/crashes are reversible.

 

[lansbergen]

I'm leaning toward believing that damage done from PEM/crashes are reversible.

After I started taking the inmune modulator I became a bit better after each flare. So in a sense I need the flares to improve. But if I overdid to much the flares were to severe to benefit of it.

 

[msf]

I don´t think so, as I don´t believe the ME episodes cause any physical damage - if they did wouldn´t we have seen it by now? They may cause some slight damage to the muscle, but you could do that in a gym too. I think an ME episode is more like an infection, where if you have several in a row you get run down.

 

[Mij]

I had a neighbour who had polio as a child and relapsed 35 years later- her legs just gave out on her. The way she described it to me was very similar to what I experienced 15 years ago when I was walking down the street.

 

[Ravn]

I had exactly the same onset as you, Adam. Slow, insidious deterioration to say 80% then a sudden crash overnight to 30%. One difference though: you went to the gym. I went to the doctor for a lumbar puncture. This was because 20 years ago I was diagnosed with MS and, naturally, the doctor suspected my new symptoms (at the 80% stage) could be caused by a flare up of the MS (which had been in remission for 15 years). Unfortunately the lumbar puncture went wrong and I spent an hour in absolute agony, the can't stop yourself from sceaming out loud type of pain (plus some lesser after effects for months and of course the crash to 30%). So your trigger for the sudden crash seems to have had to do with physical exertion while mine was trauma. Maybe this supports the theory that different triggers can lead to the same ME processes?

As for the MS, MRI scans and other neurological testing just showed the same old lesions I had 15 years ago when the MS went into remission so luckily it looks like the MS is still in remission. I do have some mild "left-over" neurological symptoms that haven't changed in 15 years so I find them quite easy to distinguish from the ME (though the doctors don't seem to be able to believe that). I also feel the fatigue I had with the MS back when it was active was of a different quality to the one I have now with the ME. But even for me who knows both types first hand it is impossible to describe how the difference feels. Apart from one key point: light exercise helps with MS fatigue. It most assuredly does not with ME fatigue.

 

[alex3619]

There was a recent repeat CPET study out of New Zealand that showed they do not have the same energy crash as us. Their issues appear to be neuroimmune in a way that is different to ours. Our crashes have a distinct metabolic issue that so far is not seen in any other disease, though there was one HIV patient who showed the same problem on a repeat CPET.

Demyelinization shows up on some neuroimaging. We do have visible problems that might be lesions, but unlike demyelinization they can appear and disappear, or move, on repeat scans.

 

[Alvin2]

I do wonder why we are getting worse, many conditions you have it or you don't, the severity of symptoms are not as wide ranging. Why this is and why a bad blowout can cause permanent capacity reduction is a very good question. If for example its immune then heavy activity may be causing some immune change. It may be found that high levels of lactic acid or AMP is priming the disease mechanism and this causes the the permanent reduction in ability to function.
We really need more information before we can come to any conclusions or even postulate good theories