Does anyone with CFS get back to 100% ever?

[hunter1899]

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?

 

[jaybee00]

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.

 

[Wishful]

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.

 

[jaybee00]

Here is part 2 of @ScottTriGuy interview with Howard Bloom.

https://medicalerrorinterviews.podb...cfs-how-howard-beat-chronic-fatigue-syndrome/

 

[Richard7]

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.

 

[Richard7]

@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]

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.

 

[Wishful]

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).

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.

 

[Wishful]

I have a theory that it's important to keep on top of infection and take a regular daily traditional medicine anti viral tonic.

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.

 

[Lieselotte]

@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

 

[hunter1899]

@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

Appreciate that.

 

[godlovesatrier]

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.

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]

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?

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.

 

[Wishful]

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

Getting two "longer than just a day" remissions certainly does show that it's not permenent damage. It certainly gives my hope for permanent recovery some day.

 

[hunter1899]

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.

To what do you attribute your two remissions?

 

[lint7]

Yes, I recovered to 100%. Several times! Never for longer than a day though.

I burst out laughing at that. Thanks.

 

[Wishful]

I burst out laughing at that. Thanks.

Good. PWME need all the laughs and smiles we can get.

 

[NL93]

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.

 

[Wishful]

Pacing would still be necessary . Like being able to work full time, socialize, but no exercise.

That might be true for some subsets, but not for all. I can do lots of physical exertion, pacing not necessary, but even minor socializing causes PEM.

 

[uglevod]

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.