Have you ever had remission from CFS?

[Hip]

Hi Hip, yes but in my case this idea doent fit. I had NO treatment other than natural therapies and rest. I had a remission for 10 years. 3 years ago i had measles and ive been in a severe relapse ever since -lthough i am slowly slowly climbing out of it, again with no drugs, just diet supplements and herbs. I believe now that i can never get rid of "it" whatever "it" is, but i can put it into remission for significant periods of time.
I hope that is the case because its happened to me and others on this thread before. During those 10 years i wasnt 100% but i also did mostly everything i wanted to and wasnt too restricted. I also had various intense stresses and illnesses in that time but didnt relapse until the incident 3 years ago.
I wish i knew a simple way to explain it but im afraid i dont.

The idea might fit:

What happened to you might conceivably be explained by the re-emergence of your old CFS viruses, due to the measles infection.

Let's say your CFS was originally caused by one or more enteroviruses, and/or one or more herpes viruses (these are the viruses typically associated with CFS). These CFS viruses you would have caught years ago. Let's assume that, by your program of rest and natural therapies, you managed to get on top of these CFS viruses, and they were more-or-less brought under control by your immune system. These viruses can never be eliminated from the body, but they can be tightly controlled by the immune system, so that you have minimal symptoms.

Everything was fine, but then measles came along. Now measles virus is well-known to cause significant immune suppression in the infected person. So it is quite possible that this measles-induced weakening of your immune response then allowed all the old CFS viruses to regain the upper hand - and your CFS returned.

Of course, nobody really knowns very much at all about the true causes of CFS, so this all just speculation.

 

[Tulip]

Of course, nobody really knowns very much at all about the true causes of CFS, so this all just speculation.

History dating back to 1934 clearly shows that ME is caused by an enterovirus.

 

[Hip]

History dating back to 1934 clearly shows that ME is caused by an enterovirus.

I'd be willing to place bets on enterovirus as one of the major causes of CFS; but there is a yet no proof that enterovirus causes CFS, just an association to CFS. If there were proof, this would revolutionize the everything about CFS, especially in terms of getting serious funding. Hopefully one day.

 

[justy]

Hi Hip, yes i think that is a VERY plausible explanation. I also believe i may have some kind of predisposition as i have had MCS since i was a child and also had a lot of infections and viruses in childhood. I had really bad pneumonia at 10 then i had an operation at 11, another one at 12 and really bad Glandular fever at 13 which took me years to get over. I think a viral cause alongside some genetic predisposition or weakness alongside an inability to deal with toxins or the build up of toxins is a plausible scenario (especially for me)

 

[nanciswell]

I had had crushing fatigue/ social phobia for 35 years . I had been taking 15 mg of biotin for 6 months when I upped it to 40mg. .. I had had major relief of the fatigue with taking the biotin. overnight ... but then after a couple of months of taking 40mg daily and being full of energy the fatigue returned. I did not try upping my dose of the biotin to see if that alleviated it.. Instead I started taking P5P .

I did have a reaction to a small dose of the P5P of irritable bowel when I first took it probably due to an oxalate dump .. I was able to build up quickly to 100 mg daily and have had alot of energy since then. .

THese supplements are recommended for problems with oxalates which makes sense in my case. I had what looked like a dump where the body moves oxalates out of storage so there is a temporary worsening. This has happened with taking a few supps... once while taking the biotin . as well as the initial worsening with taking P5P. .. as well when starting to take manganese.

I did get tested for pyroluria and as long as that test was accurate I do not have that .. which would also explain an improvment with taking P5P/B6.

 

[acouchy]

I have experienced one remission in 16 years. Probably 6-7 years into my illness. I had gained 40 pounds from taking the anti-depressants my GP had prescribed. I decided that the anti-depressants were not helping and that it was time to stop taking them and lose the weight. So I started the Atkins diet. I followed it very strictly for 2 weeks. I didn't notice any changes while I was on the diet but soon after I stopped my symptoms greatly improved. I felt fantastic (lots of energy and very little pain) for 2 months. I remember my co-workers commenting on how changed I was. I've never been sure if it was the diet or something else. I recently was talking with my specialist about the possibility of the Atkins diet helping me and he recommended the Paleo diet if I wanted to try something high protein again. So I decided to give it a try. I have just completed my first month. I have lost 12 pounds and mentally feel great about losing some weight and having followed this diet so strictly but no changes in energy,pain,headaches or brain fog. I have decided to continue with a very strict eating plan for another month and then make a decision about how strictly I will follow this diet in the future.

 

[Kenjie]

Dec 2011 I had my son at that moment I developed an under active thyroid which wasnt diagnosed til March 2012 I spent a good portion of that year dreadfully fatigued and it was not until august that I'd started thyroxine. The doctors originally thought my thyroid would improve on its own but I persisted and said i believe I need medication. Slowly I started to improve after that. It was a couple months before I could better function again.

I'd still get tired but I could manage much easier. April 2013 I returned to nz after 3 years in Australia. May 2013 joined a gym. Got a few colds and the odd occasion I had to skip gym due to not feeling up to it but I have to say it was nothing in comparison to the past year and half... December 2013 I caught a tummy bug...

...doctors thought I had appendicitis... I had stomach pain.. Bad number 2s as well as vomiting....then I seemed to be constantly unwell after that but I'd already enrolled in a college course so in feb 2014 til July 2014 I struggled through but I completed it somehow... That was an accomplishment in itself! I was severely ill throughout last year constant virus after virus. At one point blood tests showed 4 viruses all at the same time. I also had a consistent sinusitis throughout 2014...

That was finally diagnosed as chronic sinusitis in Nov 2014 after trying to get doctors to listen to me on many occasions. December 2014 was diagnosed with CFS after all tests for everything else came back normal. Was also cleared of chronic sinusitis via camera up my nose dec 2014.. Now been badly fatigued ever since and even when I have 'better days' I can still feel tired or very tired.

So if I ever had a 'remission' it would have been 2013 although not a hundred percent remission but I could do way more than I can now including gym and walking about town.