ME as a permenant damage to the central nervous system

[Davsey27]

Curious if anyone else agrees with this that It is a post something [insert here could be a number of things viral,bacterial,toxin exposure,etc] permant damage to the central nervous system

The damage that has been left over in most cases that likely will never be fully regained even with all the funding thrown at research

Similar to an acquired brain injury seen in athletes or gulf war illness

Perhaps this may be in my opinion likely never a 100 % cure for most individuals [which is different than the 5% remissions]

Thank you

 

[L'engle]

I tend to agree. Sometimes I think my body might be able to improve significantly but brain fog and other neurological symptoms it seems less likely. The long covid brain scans are showing damage at a small scale and I think this will be a most likely diagnostic for us as well.

 

[belize44]

Sad, but I tend to agree as well.

 

[andyguitar]

The damage that has been left over in most cases that likely will never be fully regained even with all the funding thrown at research

First we would need to see if there is any damage. Then, if there is, does it cause any symptoms. If we assume yes to both the next question is can it be reversed? Some stroke victims make a full recovery even when there is observable damage that causes symptoms. In ME/CFS I've not seen any conclusive evidence that there is damage that causes symptoms. More a case of some dysfunction that might cause symptoms.

 

[Hip]

This viral "hit and run" theory of ME/CFS is one of the oldest theories. This is the idea is that during the acute viral infection, some permanent physical damage is caused in the brain or in some other important area of the body, and ME/CFS appears as a result of that permanent damage.

One thing that argues against this "hit and run" theory is the fact that when you give enterovirus ME/CFS patients interferon therapy, this can often allow severe bedbound ME/CFS patients to return to work. Unfortunately though most patients relapse within a year, so interferon is not a permanent cure.

If the "hit and run" theory were true, you would not expect antivirals to provide any help.

Of course, it could be that a certain subset of patients have their ME/CFS due to permanent physical damage. I might be in that subset, as my illness started after a viral brain infection which did indeed permanently damage my brain.

 

[BrightCandle]

I have had spontaneous remissions that resulted in considerable increase in capacity and I have improved from my worst. This would not be possible if it was damage. Its something that can resolve in a matter of days which makes me think its immune system driven. Given some people have recovered and many have had remission events I think there is ample evidence to suggest recovery with the right intervention would be rapid we just don't know what those are.

 

[Wayne]

Some stroke victims make a full recovery even when there is observable damage that causes symptoms.

Hi @andyguitar -- Just ran across a video a few days ago about a clinic in Florida getting dramatic results successfully treating stroke victims. Made me wonder if any of this is applicable to ME/CFS brains. Looking into this further is high on my "to do" list. I think there's a good probability that some natural alternatives to the drug they talk about might get similar results. You only need to watch about 3 minutes to get the gist of it.

 

[wastwater]

Dr Hyde says it is
I think it damage to the brain vascular system then glial activation

 

[Wishful]

I agree with BrightCandle: I've had my ME abruptly switch from full ME to full non-ME over the space of minutes, which is strong evidence that there isn't permanent damage involved. I've also had abrupt switches from long periods of just dragging myself around, to feeling energetic enough to go for multi-hr hikes (but not fully non-ME), which also doesn't fit the theory of permanent damage.

I think ME involves a feedback loop with a positive value. Switch that to a negative value and the system returns to normal.

 

[Wishful]

Dr Hyde says

But what does Dr. Jekyll say?

 

[L'engle]

It's probably immune based as a start but then as we are forced to overdo things and keep upright postures etc, damage could occur.
When I collapsed at work 15 years ago, I felt a "clunk" or "thunk" feeling in the back of my head a few seconds before having to sink to the floor. I was already "mildly ill", meaning exhausted 24 hours a day but still able to keep going most of the time.

Over the next few months my brain fog worsened from mostly manageable to only having windows of proper functioning. My other symptoms worsened as well. Damage? Who knows. A researcher looking at a PET scan for specific features would have to determine that. Even so we don't really know if all types of brain damage can be detected yet. Imagery is improving these days so time may tell.

If the illness were recognized and people allowed to rest and heal, the possibility of damage would likely be much less.

 

[Blazer95]

It may be a protection Mechanism to stop myself from giving up, but I tend to think this:

1. There is damage. Wether its endothelial, nerve damage, brain, immune system or all of the mentioned.
2. There is Not only damage but also dysregulation, ongoing inflammation etc.

2 can be fixed "easier" thus allowing more people to move up one bracket (f.e from severe to moderate-severe)

1 can "partially heal" or rarely "heal". This is what my doctor said "i mean If your immune system is severely damaged, that doesn't mean it cant Recover atleast partially".

I think full Recovery is Not possible. I think Remission is.

I Like to have some "realisitic optimism" by my side. Maybe its Just Helping me, maybe its true.

 

[belize44]

It's probably immune based as a start but then as we are forced to overdo things and keep upright postures etc, damage could occur.
When I collapsed at work 15 years ago, I felt a "clunk" or "thunk" feeling in the back of my head a few seconds before having to sink to the floor. I was already "mildly ill", meaning exhausted 24 hours a day but still able to keep going most of the time.

Over the next few months my brain fog worsened from mostly manageable to only having windows of proper functioning. My other symptoms worsened as well. Damage? Who knows. A researcher looking at a PET scan for specific features would have to determine that. Even so we don't really know if all types of brain damage can be detected yet. Imagery is improving these days so time may tell.

If the illness were recognized and people allowed to rest and heal, the possibility of damage would likely be much less.

Agreed!

 

[Viala]

I had a few remissions and felt very normal then like nothing was wrong. One of the longest one happened already after couple years of ME/CFS, a lot of energy like a healthy human being. I relapsed because I didn't have enough time to heal when I had to do things that caused a crash in the past. I think that up to some quite severe point there is no permanent damage, hopefully. It takes time to regenerate after such a disease and the problem is many of us do not have this time and also not everyone has remissions. When we will know more about CFS it should be easier to get into remission.

 

[Wishful]

When we will know more about CFS it should be easier to get into remission.

Achieving remission is easy. The hard part is doing it intentionally and reliably. Still harder is maintaining the remission state.

By achieving remission being easy, I mean that it's as easy as taking a single dose of some chemical ... but it has to be the right chemical for you, and maybe at the right point in your ME, and with other mysterious contributing factors. The point is that it's not hard in the way that it requires months of dosing and radiation treatments or whatever just to see a slight improvement.

 

[Blazer95]

I would partially agree with this and that makes it even more frustrating

 

[alcasa]

This viral "hit and run" theory of ME/CFS is one of the oldest theories. This is the idea is that during the acute viral infection, some permanent physical damage is caused in the brain or in some other important area of the body, and ME/CFS appears as a result of that permanent damage.

One thing that argues against this "hit and run" theory is the fact that when you give enterovirus ME/CFS patients interferon therapy, this can often allow severe bedbound ME/CFS patients to return to work. Unfortunately though most patients relapse within a year, so interferon is not a permanent cure.

If the "hit and run" theory were true, you would not expect antivirals to provide any help.

Of course, it could be that a certain subset of patients have their ME/CFS due to permanent physical damage. I might be in that subset, as my illness started after a viral brain infection which did indeed permanently damage my brain.

How do you know you do have permanent brain damage?

 

[GreenEdge]

Yes, I believe ME is damage to the central nervous system, but I don't see it as permenant.

I often feel nerve pain in my hands, so I know I have nerve damage. When I do, I believe that's inflammation and healing. And when I've taken cannabis, the hands and feet are just more sensitive than the rest of my body. That's inflammation and healing.

I've been supplementing with Vit. B1 Thiamine (TTFD). Each time I take TTFD the nerve pain increases and I find it harder to sleep, but over time the daily nerve pain has diminished to the point where I don't notice it and I can now take TTFD (or ordinary Thiamine) daily. So my verdict on Alithiamine (TTFD) is you feel worse before you feel better, for example thread: Bad reaction to 50mf TTFD thiamine (allithiamine)

I have also taken lion diet to another level, I find the closer I get to natural, the better I feel. 4 months ago I increased fat and that's helped. A few days ago I made a change that has speed up my digestion and I feel better. I now eat my meat (beef) raw with frozen (lamb) fat and my sense of taste and smell are improving. And fatigue I've had for over a month is improving. Some days I feel good until I do hard work and within 10mins I feel fatigued again and realize: I'll need to continue taking it easy for a little longer.

 

[Hip]

How do you know you do have permanent brain damage?

This is a theory that there might be some permanent damage in the body during the acute infection, but nobody knows if it is true, or where the damage might be.

 

[Dysfunkion]

I've had windows of feeling almost normal but they're extremely rare. I have a lot of issues with a lot of systems in my body so I think the main issue is that my brain is overburdened by all of my sensitivities and infections but technically can actually function well temporarily when the stars align. I remember when I was very young having less severe neurological problems but still have the same one's I do now which simply got worse as I got older. They are very stroke like and I know when my immune system is acting up or I get over exposed to radiation it can get pretty ugly. If I keep my immune system and diet under control with a stable environment I can control symptoms well enough but you can still tell there's something a bit off about me.

I am fully aware when my brain isn't working correctly though, like I can tell you even when I'm being forced against my will to act like a broken robot what is going on. Not sure what implies about the nature of my damage though. One of the biggest things my brain has issues with is processing opposite things (like I regularly mix up night/day, left/right, reversing numbers and the first sounds of two words when I read them, ect) , controlling speech, controlling motor functions while processing certain sensory information, and math. Possibly was born with it and my brain developed around it or I got something very early on that got it that wasn't treated right and gradually caused severe accumulative damage.