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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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A Spontaneous Remission/Recovery

Messages
90
Did you ever hear of somebody with CFS who had a spontaneous remission? Long term, without relapsing?
Or
Did you hear of somebody who recovered and didn't relapse?

I'm just curious if it's possible.
 
Messages
90
I've been in a soft remission lately - not 100%, not totally normal in my energy levels but doing better. So far though I've never held on to a remission.
That's great! I hope you will be even better.
Did you try any specific treatment, medication(s) that helped you?
 

Diwi9

Administrator
Messages
1,780
Location
USA
The bigger problem is that we cannot even definitively diagnose ME/CFS. When was someone diagnosed and by what criteria? I'd wish to have statistics too, I just don't believe any of them or recovery stories because we don't know from what kind of "fatigue" someone has recovered. When a single government chooses to seriously study and track this disease, then we will have this information...for now, it's all anecdotal.
 

Runner5

Senior Member
Messages
323
Location
PNW
Did you try any specific treatment, medication(s) that helped you?

I quit taking Prilosec & Zantac and all other stomach medications, added in digestive enzymes, realized I was allergic to Oats, started avoiding easily digested carbohydrates. I found out that heavy fats like butter and meat give me gastritis.

I quit all sleep medications, no more L-Tryptophan, Benedryl etc.

Been living on protein shakes and vegetables.

Supplements I still take, L-Tyrosine, Fish Oil, Multi vitamin

My inflammation is really down but it is super hard to stick to the no grain / no sugar / no heavy fats / not a lot of meat. I did sneak out for a Starbucks today and the other day when I had a headache I did eat a pint of ice cream. I should be better....

It seems like my body requests mostly fiber, lowish carbohydrate and easily digestible protein with low fat. It's probably too specific to be of use to anyone else other than myself :(
 
Messages
90
I quit taking Prilosec & Zantac and all other stomach medications, added in digestive enzymes, realized I was allergic to Oats, started avoiding easily digested carbohydrates. I found out that heavy fats like butter and meat give me gastritis.

I quit all sleep medications, no more L-Tryptophan, Benedryl etc.

Been living on protein shakes and vegetables.

Supplements I still take, L-Tyrosine, Fish Oil, Multi vitamin

My inflammation is really down but it is super hard to stick to the no grain / no sugar / no heavy fats / not a lot of meat. I did sneak out for a Starbucks today and the other day when I had a headache I did eat a pint of ice cream. I should be better....

It seems like my body requests mostly fiber, lowish carbohydrate and easily digestible protein with low fat. It's probably too specific to be of use to anyone else other than myself :(
Thanks.

I am on a quite strict diet too, helps with many symtoms but not enough, I'm mostly bedbound.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@Runner5 So, before you changed to your new diet, you had PEM, orthostatic intolerance, cognitive dysfunction, and fatigue lasting >6 months, and then switching diet made all your symptoms go away? Did you happen to have immune system issues or chronic infections, too?
 

Rvanson

Senior Member
Messages
312
Location
USA
Did you ever hear of somebody with CFS who had a spontaneous remission? Long term, without relapsing?
Or
Did you hear of somebody who recovered and didn't relapse?

I'm just curious if it's possible.

No, I have not
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
It would be great to meet some of those people ... and listen to their stories.
How they made this statistics?

I imagine they make up the numerous blogs and YouTubes of ex CFS folks saying that yoga / diet / exercise / DNRS / Gupta / etc cured them. And for all we know those things may have played a role along with good luck

Also the many who have mystery illnesses that went away and they desperately want to forget so they pretend it never happened / people who never got a CFS diagnosis and identified as CEBV / Lyme / POTS / CIRS / severe anxiety or depression and shared their remission stories under a different headline

Let’s say 1 in 100 people share their experiences online in a way that’s indexable by Google (given the demographic distribution of people more apt to do so and the demo of the diagnosis), there should be 8,000 stories on various forums, blogs, news articles, case studies, and social media, maybe half of which are in English = 4,000 (which sounds about right from what I’ve seen)
 
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notmyself

Senior Member
Messages
364
till we don t have a 100% biomarker diagnostic for this disease statistics don t really meant much...so don t judge or chances of recovery from statistics..you can have 0% chance or 100%...nothing is for sure
 

andyguitar

Moderator
Messages
6,595
Location
South east England
@Diwi9 and @notmyself have both identified the main problem . The lack of statistical evidence. As for the question asked by @Eve18 here are 2 cases: Female who became ill with ME age 12. Ill for 3 years and unable to attend school. No treatment. Recovered. Now age 28 no health problems and doing an MA in art. Female became ill age 25 tried most of the popular alternative treatment used in the UK. Ill for 5 years. Recovered about 7 years ago. Has been well scince then. Both were known to me. As to what got them better and stay better. No idea.
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
I quit taking Prilosec & Zantac and all other stomach medications, added in digestive enzymes, realized I was allergic to Oats, started avoiding easily digested carbohydrates. I found out that heavy fats like butter and meat give me gastritis.

I quit all sleep medications, no more L-Tryptophan, Benedryl etc.

Been living on protein shakes and vegetables.

Supplements I still take, L-Tyrosine, Fish Oil, Multi vitamin

My inflammation is really down but it is super hard to stick to the no grain / no sugar / no heavy fats / not a lot of meat. I did sneak out for a Starbucks today and the other day when I had a headache I did eat a pint of ice cream. I should be better....

It seems like my body requests mostly fiber, lowish carbohydrate and easily digestible protein with low fat. It's probably too specific to be of use to anyone else other than myself :(

Funny enough, its pretty similar to mine.
I HAVE to avoid any sugar, gluten, additives, processed food, wheat, rye. etc, MSG and eat little and often food.
When I take a trigger I crash pretty heavy and may accompany with angioedema and colitis.
Basically a makers diet without grains exception rice. I eat nightshades.
This keeps me pretty "stable"