Have you ever had remission from CFS?

[taniaaust1]

Has anyone had more than one remission? .

What I find interesting, Ive heard of many having a remission but then crashing, is that ive Never heard of anyone having a full or very near full remission crashing and having a second remission. I wonder why no one ever seems to have a second remission. (maybe more damage is done the second time over?)

 

[justy]

What I find interesting, Ive heard of many having a remission but then crashing, is that ive Never heard of anyone having a full or very near full remission crashing and having a second remission. I wonder why no one ever seems to have a second remission. (maybe more damage is done the second time over?)

I'm working pretty hard on that second remission, i'll let you know when it comes!

 

[SaveMe]

I discovered some exciting news on the subject of remission.

We followed 65 CFS patients for 3 years. After the 3 years were up, 10% sustained total remission and 56.9% experienced partial or total remission!

Shorter illness duration was a significant predictor of sustained remission, and thus early detection of CFS is of utmost importance!

 

[heapsreal]

i got a complete remission using inosine which lasted about 6 weeks where i was exercising and actually sleeping normally like a normal person with no meds herbs etc, then i crashed. I got close to this after doing 12 months of famvir then i changed to valtrex and lost all those gains, currently trying to get them back. As for inosine, i tried a few times and was unable to repeat it, although it did continue to help with joint pain which i was told this was due to raising uric acid levels which works as an antioxidant, inosines other supposed benefit is improving nk function. Im currently back on inosine, famvir and cycloferon another med which has helped me so we will see what this brings me plus another thousand other supplements, who needs real food when u have lots of supplements,lol.

cheers!!!

 

[Tulip]

I discovered some exciting news on the subject of remission.

We followed 65 CFS patients for 3 years. After the 3 years were up, 10% sustained total remission and 56.9% experienced partial or total remission!

Shorter illness duration was a significant predictor of sustained remission, and thus early detection of CFS is of utmost importance!

However the million dollar question is, did they have CFS or M.E. ?. M.E. isn't post viral syndrome for instance.

There is no way of knowing.

 

[Hip]

However the million dollar question is, did they have CFS or M.E. ?. M.E. isn't post viral syndrome for instance.

There is no way of knowing.

Yes, that is the million dollar question.

I would like to know: out of those people that said that had CFS/ME symptoms for a up to a year or so from an initial triggering viral infection, and then got full remission, how may of those had Epstein-Barr virus as their trigger?

Chronic EBV infections can last a long time, and do cause the CFS/ME state while the infection is ongoing, but these chronic EBV infections do eventually resolve on their own. So if this happens to someone, they are going to think that they had CFS/ME, and got full remission, whereas in fact they just followed the normal course of chronic EBV infections: ie, the EBV infection precipitated the CFS/ME state for a while, followed by a pretty much guaranteed recovery.

Does anyone have any info on how many recovered people might have just had chronic EBV infection, rather than proper CFS/ME?


Another interesting case of remission is that of Dr John Chia's son, Andrew Chia. I read that Andrew got remission after (I think) interferon therapy for an enterovirus-associated CFS/ME. He was fine, until he went on a mountain hiking holiday I believe, where the constant day-after-day physical exertion of mountain hiking brought back his symptoms, and a relapse.

The trick, it would seem, if you do get remission, is not to push your luck, and go do too many exerting things.

 

[Tulip]

Yes, that is the million dollar question.

I would like to know: out of those people that said that had CFS/ME symptoms for a up to a year or so from an initial triggering viral infection, and then got full remission, how may of those had Epstein-Barr virus as their trigger?

Chronic EBV infections can last a long time, and do cause the CFS/ME state while the infection is ongoing, but these chronic EBV infections do eventually resolve on their own. So if this happens to someone, they are going to think that they had CFS/ME, and got full remission, whereas in fact they just followed the normal course of chronic EBV infections: ie, the EBV infection precipitated the CFS/ME state for a while, followed by a pretty much guaranteed recovery.

Does anyone have any info on how many recovered people might have just had chronic EBV infection, rather than proper CFS/ME?


Another interesting case of remission is that of Dr John Chia's son, Andrew Chia. I read that Andrew got remission after (I think) interferon therapy for an enterovirus-associated CFS/ME. He was fine, until he went on a mountain hiking holiday I believe, where the constant day-after-day physical exertion of mountain hiking brought back his symptoms, and a relapse.

The trick, it would seem, if you do get remission, is not to push your luck, and go do too many exerting things.

Yup, lot's of people get post viral syndrome and then completely recover for ever, get wrongly told they have ME/CFS and then can't understand why people with the real M.E. can't get better. Most doctors don't realise that M.E. is NOT PVS.

I think people with M.E. need to realise that remission isn't recovered, you can't go back to those pre illness energy levels. It needs to be a new lifestyle in order to maintain the remission. Now if only our brains would accept that instead of thinking "I'm well! I'm going to do everything that I have missed out on for the last 5 years in the next 3 months"

 

[anne_likes_red]

I think PVFS accounts for a good portion of the percentage of "CFS" patients who recover. The literature I have from the MEA (Britain). and even my local ME association says 80% recover! Obviously some ME sufferers do recover, but 80%?? Fully? Does that mean that for the million sufferers there are 4 million recovered? Where are they now?
....So those who don't recover not only have a debilitating and progressive illness, but they have failed to recover. I've ben trying to recover for nearly 27 years.

Re Remissions. I haven't had a remission, but after my initial onset in 1984 (a cerebral and retinal protozoal infection) I "recovered" over the course of a year to 70% approx, then to maybe a bit better than that before contracting Mono in 1998. I'm now 30%, and sometimes worse.

 

[leaves]

Hey Anne, what protozoal infection was that ? How were you treated? Is it gone now?

 

[anne_likes_red]

Hey leaves,

I have/had congenital (from before birth) Toxoplasmosis. It killed my twin in utero. I was treated in hospital with pyrimethamine (which inhibits folate metabolism), I developed CFS, then every approx 18 months after that episode the toxoplasmosis flared up and I was treated with drugs and steroids again.
After 10 years I was treated for the toxo with a 12 week course of injectible homeopathics and since then (many years now) I have never had any detectable evidence of toxo again. My titre has stayed at 550.
That "controversial" approach - the homeopathics - was recommended by my primary GP (MD) and I'm very grateful to him.
Anne.

 

[heapsreal]

maybe the difference between post viral fatigue and ME is that the brain and nervous system get injured in ME from the infection and that injury is still there even if the virus is cleared, but then theres those who still have the active viruses going forever who sort of fit both categories.

cheers!!!

 

[*GG*]

I think PVFS accounts for a good portion of the percentage of "CFS" patients who recover. The literature I have from the MEA (Britain). and even my local ME association says 80% recover! Obviously some ME sufferers do recover, but 80%?? Fully? Does that mean that for the million sufferers there are 4 million recovered? Where are they now?

....So those who don't recover not only have a debilitating and progressive illness, but they have failed to recover. I've ben trying to recover for nearly 27 years.

Re Remissions. I haven't had a remission, but after my initial onset in 1984 (a cerebral and retinal protozoal infection) I "recovered" over the course of a year to 70% approx, then to maybe a bit better than that before contracting Mono in 1998. I'm now 30%, and sometimes worse.

I believe Dr. Bell said something like this, but he now wishes he never published the paper that stated something to this effect. It should be on a website in the near future, from the MA CFIDS org in the USA.

GG

 

[justy]

I didnt have a short illnes the first time, was gradual onset and definately not PVFS. I also think that if you have a remission from M.E you cant push back to completely normal, otherwise i believe you will relpase again. However i was in remission for pretty well 10 years and did lots of stuff in that time that well people do. 10 years is a long time to think you are cured for only to find the dreaded disease surfacing again and even worse than the first time. My relapse happened after a measles infection (i had been vaccinated) which then caused pneumonia and ive been ill now for 3 years. I wish i could see some sort of pattern to all this.
One thing that i think protected me in the 10 years was having two more children. I couldnt attempt to work much and had to slow way down, i also breastfed my kids for a long time, again protecting me from going back to work, deep inside i knew i was always scared of the day wehnn i had to stop being at home and work as well, i always knew this was never really going to happen but was in denail about it for many years.

 

[invisible ME]

I believe Dr. Bell said something like this, but he now wishes he never published the paper that stated something to this effect. It should be on a website in the near future, from the MA CFIDS org in the USA.

I think Dr. Bell spoke about this in a talk he gave last year (scroll down the page about half-way for the videos). If I remember correctly, he said his previous research that indicated fairly high levels of recovery turned out to be inaccurate. When he revisited those patients he found that most of the patients who has self-reported as recovered actually had fairly debilitating symptoms, except that their OI symptoms had abated. This allowed them a much higher degree of functioning, although they really were not "recovered" at all.

I can't remember more details, and it would be interesting to know whether his earlier study relied primarily on self-reported improvement without some kind of objective markers. This seems to be a recurring problem in ME/CFS research. I sometimes wonder if we are not so happy to have improved at all (especially those who have been sick for many years or decades) that we over-emphasize improvements. Within the next year I will have been sick for fully half of my life. I can barely even remember what true health feels like.

 

[LaurelW]

I think you are right about this--I went through it myself. During a period of relative "wellness," I still got PEM and had trouble with stress making me worse. But compared to how awful I felt before, it felt like "recovery."

 

[johnwfalk]

I got sick on May 5, 2007 with brutal flu. This was a month after appendix ruptured on flight from Dubai to JFK. Basically from May 5th onwards I tried to keep going with my life until I fully crashed in March 2008: bedridden, unable to read, etc. In July 2008 on went on anti-candida diet and followed Dr. Teitelbaum's protocol inclduing T3 (body temp 95), 10 mg cortisol, HCG to boost sub-testtosterone, antifungals, Valtrex, antibiotics, Florinef for severe POTS, klonipin to sleep more deeply, etc. I was fanantical, especially about rest and diet. By March 2009 was feeling awesome and had fulle energy and back working full time and working out (with weights mostly but some jogging) by May 2009. Ah, but in feeling so good I forgot what it was to feel so bad, and I went off every step of protocol and diet. In Sept 2009 had massive cravings for sugar which I indulged with pints of ice cream. In October these cravings had gotten way out of hand so I went back on low carb, anti-candida diet - but kept living at full speed. Had relapse while out running with family. I rested for month - but then went back to work and fully collapsed again in February 2010. Been in bed ever since but only recently - for whatever reseason - have returned to what got me better the first time. If I would have to list in order of importance it would be: low car/anti-candida diet; klonipin for deep sleep; resting nearly all day until I no longer needed nap; T3; HCG; and nutritional supplements inclduing d-ribose. As for the rest I don't know whether they helped greatly or not.

 

[Hip]

maybe the difference between post viral fatigue and ME is that the brain and nervous system get injured in ME from the infection and that injury is still there even if the virus is cleared, but then theres those who still have the active viruses going forever who sort of fit both categories.

cheers!!!

Yes that is an important debate: whether it is permanent damage that is the underlying cause of CFS/ME, or just ongoing low-level chronic viral infection that causes CFS/ME.

Call me an optimist, but I like to think that there is little permanent damage. If you look at the work of Dr John Chia, and his use of interferon therapy to bring about near remission in patients with enterovirus-associated CFS (which does seem to work: it provides near remission for up to 14 months in some patients), this would seem to support the idea that there is no permanent damage. It is just the ongoing low-level chronic viral infection that causes CFS/ME, and when this infection is virtually banished (temporarily) by interferon therapy, you get a remission.

Unfortunately, interferon therapy cannot eliminate every last viral particle from the body, so after a year or so, it seems that the virus re-estabishes itself from its almost banished state, and the CFS/ME comes back.

 

[justy]

Hi Hip, s a person who has had a long remission i can say that at least for some of us the damage does not seem to be permanent. When i was in remission i had no cognitive problems etc, i could more or less function normally which would imply the damage isnt permanent. On the other hand though in a strange circular way because i relapsed badly again, many years later i wonder if there is something permamnent that doesnt go away which means we can relapse again.

 

[Hip]

Hi Hip, s a person who has had a long remission i can say that at least for some of us the damage does not seem to be permanent. When i was in remission i had no cognitive problems etc, i could more or less function normally which would imply the damage isnt permanent. On the other hand though in a strange circular way because i relapsed badly again, many years later i wonder if there is something permamnent that doesnt go away which means we can relapse again.

I would suggest that the permanent thing is just the presence of the virus in the body. Even though you may be able to push back the virus population to a bare minimum using intense antiviral therapy like interferon, the fact that some viruses remain means that the infection can slowly reestablish itself; that is, the virus population can begin to grow in size again once you finish the interferon therapy.

I would guess this is why people get a year or so remission from CFS/ME from interferon therapy, but all this time the virus population may be regrowing. Usually people in remission crash back into CFS/ME during a week that they have overexerted themselves for several days in a row, suggesting that the exercise has somehow weakened the immune system, and allowed the virus to "blitzkrieg" back into dominance.

 

[justy]

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.