Hello, Has Anyone Cured Their CFS by 100%

[unto]

sick since May 1985
I did not do important therapies, have been increasingly deteriorating slightly,
I have a moderate / mild ME program that allows me to work 5-6 hours a day ...
I do not think you can recover from ME, someone thinks so but I think it's mostly a "his" conviction ........
over time you learn to live with the disease and suffers less ....

 

[Abdulrahman]

This is an ME forum, not a chronic fatigue forum. I have trouble believing that someone fully understands ME or the actual symptoms involved if they are willing to refer to it as CF.

Thank you for the deep insight, I'll get a lawyer to proofread my messages from now on. I added the words "Syndrome Disease" to the original message although the title already clearly states "CFS" which cannot be anything but Chronic Fatigue Syndrome on this Board..

And by the way,understanding ME or CFS as per its current medical definition means nothing in terms of actually developing a cure. One is an exercise in semantics and definitions, while the other is an intellectual challenge that requires high intellect. This is a more worthy goal.


Abdulrahman

 

[valentinelynx]

how did you find this out?

From an RBC (red blood cell) magnesium level. The body tightly controls the amount of magnesium circulating in your blood, so your blood levels will appear normal even if your total body stores are extremely low. Total body stores are measured by measuring the amount of magnesium found in your red blood cells. Low magnesium stores are very common in ME/CFS, as well as in Lyme disease and other tick-borne infections. Easy, inexpensive test, well worth doing.

And, it took me a year of taking supplements to get my RBC Mg+ levels back in the normal range. I have to take about 2 grams a day of magnesium supplements to keep my stores up! I use chelated magnesium (e.g. Enzymatic Therapy's Krebs Magnesium Potassium Tablets). Cheaper magnesium supplements often are largely MgOxide, which is very poorly absorbed: it makes a great laxative, though!

 

[Jenny TipsforME]

more so than the first time

I didn't know this before it happened to me, but this seems to be a common pattern. Someone gets ME, perhaps initially severe, or boom and busting. They gradually get better even to the point of remission. This comes quite easily (in retrospect) perhaps through pacing. Then they get a new virus (possibly at the same time as being very busy) and they're worse than ever. This time the post viral ME symptoms are very hard to shift.

In my early twenties I found ME hard to live with but I never had months of bedbound level like I did in a 2012 relapse. The strategies I used to use just don't produce the same result.

What I don't know is if there's any point in talking about this widely? Is it possible to prevent? If not, it might be better people in remission don't know about this phenomena. They might as well enjoy their health rather than living with a sword of Damocles hanging over them.

My relapses and downward steps have always been post viral (sometimes also if I do too much, but never without a virus as well). Even being housebound I don't avoid viruses, so it is hard to know how to prevent this problem.

 

[Alvin2]

Low magnesium stores are very common in ME/CFS, as well as in Lyme disease and other tick-borne infections. Easy, inexpensive test, well worth doing.

I've taken magnesium in the past, an absorbable form, natural calm i think it was, didn't do much unfortunately
Never had a test done though

They might as well enjoy their health rather than living with a sword of Damocles hanging over them.

I would want to know, that way i can take precautions and warning signs would not be ignored. Even if Ron Davis finds a cure i will not become complacent, i always prepare for the future

 

[maybe some day]

Realistically, "cured" is a dangerous word. We have a long road ahead just to trust our bodies even if we did smash this illness. Remission is more likely.

 

[IreneF]

I had a remission of about 2-3 years. Then I went downhill until I was housebound. I've gotten to a point where I can go out occasionally and do some things around the house, but my energy level and well-being are so erratic. I've spent the last 3 days in bed or lying on the couch, for example, but on Monday I bought groceries and made a full dinner.

 

[Ambrosia_angel]

Thank you for the deep insight, I'll get a lawyer to proofread my messages from now on. I added the words "Syndrome Disease" to the original message although the title already clearly states "CFS" which cannot be anything but Chronic Fatigue Syndrome on this Board..

And by the way,understanding ME or CFS as per its current medical definition means nothing in terms of actually developing a cure. One is an exercise in semantics and definitions, while the other is an intellectual challenge that requires high intellect. This is a more worthy goal.


Abdulrahman

Hmmm...

If you've had the disease and suffered from the trauma of having this disease then you would not be so comfortable to dismiss what somebody is telling you facts about the name. This forum is not full of online SJWs telling you that your political correctness is important to the recovery of a disease. It's because there's quite a clear difference that very much impacts how we are treated by medical professionals and everyday people.

This also links into my answers. I think it's possible but hard to know. 3 reasons:

- A lot of people have underlying illnesses that mimic some of the symptoms of ME. If you go on to a lupus or ms or other autoimmune forum there are a handful of people who had ME for a long time before their diagnosis changed. It's difficult to know whether it's comorbid or another illness altogether

- A lot of people do just have CF which is a symptom that can be caused by many different illnesses included post viral fatigue and depression. Therefore many studies on recovery can be bias.

- An online forum is not the best way to find this out because most people with chronic illness actually manage it pretty comfortably. They don't need the medical and emotional support that the internet provides. Whether that be ME or RA or cancer or lupus. Most who are moderately ill and in remission aren't online researching their illness because its a small part of their life.
When my symptoms alleviated I didn't use the forum. I don't go on any forums when my life is busier. So asking that question here may also be bias.

A lot of people on here don't think that recovery is possible but nobody truly knows not even the specialists. These are just my thoughts!

Also snarky sarcasm is not cute btw you're lucky people are accepting here because on other forums I use, that wouldn't be okay..

 

[justy]

What I don't know is if there's any point in talking about this widely?

Personally I don't think this is talked about widely enough - Its common enough in older patients that it needs to be something the Drs and researchers know about so they can take it into account.

 

[Manganus]

I totally aree @Jenny TipsforME . This beast went into remission for me for over 17 years, but the entire time I could still feel it inside of me, even though my energy level was quite strong and I always felt good but never quite great. Then about 3 years ago, wham bam, the entire process started all over for me. At least I wasn't shocked as I always felt it was still there. But I was certainly angry! I will be quite interested in what Dr. Davis finds.

14 years of recovery in my case. Sometimes, duringe those years, I wondered if I'd lost some capacities for life, due to my illness as a 17-years old. But I did definitely not feel any remains of the illness.

Long version:

Spoiler: timeline

• 1980, October/November, Copenhagen, possibly viral and bacterial infections, almost recovered within a year
• 1994-98, Sweden, a series of relapses, intellectual stress, no severe infections, no season pattern, each relaps worse than the previous - end-result: partly recovered, limited life, limited capabilities
• 2008, February, Austria, sinusitis, possibly bacterial agent, recovered in 3-4 months from debilitating headache (the most distressing symptom), life further limited
• 2009, March-August, Copenhagen, series of relapses, tissue inflammations, no obvious infections, never recovered, gave up working in December 2010
• 2011, February-June, Copenhagen, dinstinct inflammation at/around jaw joint, without identified cause, severe pains & fatigue, partly recovered
• 2013, December, Spain, inflammation of the colon (colitis & proctitis), no identified cause, severe loss of mental capacity, hardly recovered