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Does anyone with CFS get back to 100% ever?

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hunter1899

Senior Member
Messages
152
Rough day. Reading this forum is so helpful but damn it can be disheartening sometimes. Does anyone with CFS get back to 100% ever? If so does it happen over time on it’s own or only through treatments and supplements?
 
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jaybee00

Senior Member
Messages
593
As far as famous MECFS people, Laura Hillenbrand seems to have gotten better—same for Howard Bloom (search this forum or google). There are no approved treatments or cures for MECFS.
 
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Wishful

Senior Member
Messages
5,750
Location
Alberta
Yes, I recovered to 100%. Several times! Never for longer than a day though. Temporary remissions at least prove that it is possible to recover, rather than being permanent damage. We just need to find a reliable way to trigger remission, and keep us in that state.
 
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Richard7

Senior Member
Messages
772
Location
Australia
I hope so.

But I have my doubts.

I know that there was a presentation given by Neil McGregor (a biochemist who has been doing me/cfs research since the 90s) in which he said that pwme/cfs were so very different from controls genetically that he thought that they had never in truth been well (in the sense that the controls were well).

People like Jen Brea and Julie Rehmeyer seem to have had clear mechanical CNS problems that perpetuated their ME/CFS and perhaps made them susceptible to ME/CFS in the first place. Which would also mean that they too had never truly been well in the sense that the controls are well.

Or might, I understand that while teathered cord is usually something that happens at week 10-12 of gestation it is also something that can happen later in life as a result of a traumatic injury such as a car crash. So if teathered cord sets up a subgroup up for ME/CFS, that subgroup could contain people who once were well and people who never were truly well. And one can imagine that they might get fully well after the surgery.

But only if the only difference between this subgroup and controls was teathered cord. Tis subset may for all I know have some of the genetic differences that McGregor spoke of.

I know that there are people who seem to have recovered from ME/CFS - I have two in my family. But I am not aware of any research that has compared them to healthy controls. I think I heard Ron Davis say something about the need to study these people to see if they were in fact recovered (i.e. as healthy as controls) or just better than they had been/ well enough to get by.

The group of women that Osamu Hotta studied would seem to be a useful cohort to study. They recovered from something that seemed to meet our definition, but recovery for that study was defined as having returned to work or school. They could still be pretty ill and meet that definition of recovery.

This sort of evidence makes me suspect that we may have all been people who are damaged in some way that made ME/CFS possible, and that a return to health - if possible might be a return to a sort of ill-health rather than the health enjoyed by controls.
 
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Richard7

Senior Member
Messages
772
Location
Australia
@jaybee00 thanks for the link to the podcast.

His comments on stress ring a bell with me, I cannot watch movies for all the reasons I used to like them and only manage the blandest tv if I watch it online and skip all the tense or otherwise emotional bits. And do indeed find stress energizing in the short term and have mistakenly assumed I was getting better.
 
godlovesatrier

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
Worth checking out Hips new thread. It covers loads of remission stories. In my own case the terrible muscle fagigue in the cells of my muscles that was impossible to get rid of has gone. However the fatigue in the whole leg/arm etc comes and goes depending on triggers. Whole body fatigue isn't great. I'm breathless all the time since 2018. Although this is the year I stopped taking stimulants.

I have a theory that it's important to keep on top of infection and take a regular daily traditional medicine anti viral tonic. My theory is that if you can keep the immune system in relative normalcy it stops you deteriorating and allows you to feel a tiny bit better. But that's just my own theory.
 
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Wishful

Senior Member
Messages
5,750
Location
Alberta
Richard7 said:
he said that pwme/cfs were so very different from controls genetically that he thought that they had never in truth been well (in the sense that the controls were well).
Click to expand...

An interesting concept. I thought I was healthy before ME, but maybe I would have been healthier without whatever it is that allowed me to become a victim of ME.
 
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Wishful

Senior Member
Messages
5,750
Location
Alberta
godlovesatrier said:
I have a theory that it's important to keep on top of infection and take a regular daily traditional medicine anti viral tonic.
Click to expand...

That might work for a subset. For me, full-blown viral infection only made my ME symptoms worse for a day or so. If some hidden or partial viral infection is involved, the antivirals for normal viral infections might not work.
 
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hunter1899

Senior Member
Messages
152
Lieselotte said:
@hunter1899 I thought the same thing when I started looking through this forum. There are so many people that seem to never have gotten better. But some do make full recovery. And as you look here more, you will see that there are many who improve their condition a good amount. Don't lose hope :hug:
Click to expand...

Appreciate that.
 
godlovesatrier

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
Wishful said:
That might work for a subset. For me, full-blown viral infection only made my ME symptoms worse for a day or so. If some hidden or partial viral infection is involved, the antivirals for normal viral infections might not work.
Click to expand...

Hi wishful. Yes I agree with you. But I think that's where a combination of say 5 or 6 traditional broad spectrum anti virals is better, assuming it was taken regularly. Even so whilst I did make gains doing this, the body gradually returns to its depressed state and I am sure the more severe the patient the more futile every single attempt at treatment is - until we figure out what the exact root cause of the disease is.
 
ScottTriGuy

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
hunter1899 said:
Rough day. Reading this forum is so helpful but damn it can be disheartening sometimes. Does anyone with CFS get back to 100% ever? If so does it happen over time on it’s own or only through treatments and supplements?
Click to expand...

I've had 2 complete recoveries / remissions when I got back to full on triathlon training and racing. But now it's been over 5 years.

Still, it gives me hope that one day I will permanently recover.
 
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NL93

Senior Member
Messages
155
Location
The Netherlands
100% full recovery seems rare (<10%) , but slowly over the years “recovering” up to fairly normal functioning is common. Pacing would still be necessary . Like being able to work full time, socialize, but no exercise.
 
uglevod

uglevod

Senior Member
Messages
220
I've recovered to like 60% on MP(mpkb.org) during the last 4 years, still suffering with brainfog and neurosis, but bed bound exhaustion for hours following 1 hour walk is the thing of the past.

Treatment is brutal though, especially for the first 1.5 years. Huge amount of apoptosis - blood tests like I was under mild chemo.
 
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