Who are the 10% that get better

[LINE]

@LINE, I would very much like to hear what you have discovered, if you wouldn't mind making a separate post about it (if you haven't already, that is). Please give us the condensed knowledge of your 25,000+ hours of research!

How much detail do you want?

 

[David Jackson]

Lol, not sure what to say, @LINE. Maybe if you summarize, and then we can ask you about certain specifics???

I learnt something tonight from @Dainty's posts... personally, I find it more helpful to hear of what has helped others, than paying hundreds to see some doctor, or reading through stacks of journal articles...

 

[alex3619]

I hear stories of remission from time to time. Many long term patients report that they recovered, and spent some good years, and then they crashed. Typically they are sicker the second time around. Now I do not doubt that some recover and do not relapse. However I also know some seem to recover and then relapse. We have to be careful about interpreting full recovery. Dr Bell may be different as he followed his patients for his whole career, though I do not know how many patients were lost to his practice. I think that, as a clinician, he is one of the few whose opinion carries weight, due to his long involvement. He also found in a small investigation that ten out of ten recovered patients were actually still sick but far below having clinically significant illness.

I good friend of mine seemed to fully recover, and went back to a productive life. It only lasted a few years. The relapse has been ongoing many years with no signs of recovery. Other long term patients have said much the same thing to me.

Those who recover do need to look after their health.

I read that, and this is not confirmed, one Rituximab-induced-recovered-patient relapsed after an ongoing exercise program. It may be that there is some residual problem in energy capacity and that overtaxing this might lead to relapse. Or not. Its far too soon, with too little research, to be sure of anything.

The majority of recovery stories I have read seem to be in the first five years. Given that we know there is a shift in biochemistry in patients at about the three year mark I have to wonder if this is involved. However, anyone who has been sick less then three to five years has a better chance of recovery.

 

[nikefourstar]

I hear stories of remission from time to time. Many long term patients report that they recovered, and spent some good years, and then they crashed. Typically they are sicker the second time around. Now I do not doubt that some recover and do not relapse. However I also know some seem to recover and then relapse. We have to be careful about interpreting full recovery. Dr Bell may be different as he followed his patients for his whole career, though I do not know how many patients were lost to his practice. I think that, as a clinician, he is one of the few whose opinion carries weight, due to his long involvement. He also found in a small investigation that ten out of ten recovered patients were actually still sick but far below having clinically significant illness.

I good friend of mine seemed to fully recover, and went back to a productive life. It only lasted a few years. The relapse has been ongoing many years with no signs of recovery. Other long term patients have said much the same thing to me.

Those who recover do need to look after their health.

I read that, and this is not confirmed, one Rituximab-induced-recovered-patient relapsed after an ongoing exercise program. It may be that there is some residual problem in energy capacity and that overtaxing this might lead to relapse. Or not. Its far too soon, with too little research, to be sure of anything.

The majority of recovery stories I have read seem to be in the first five years. Given that we know there is a shift in biochemistry in patients at about the three year mark I have to wonder if this is involved. However, anyone who has been sick less then three to five years has a better chance of recovery.

So I have been sick 2 months so I have a chance at recovery, my on set so so strange that I feel like if I did recover I would never go back, unless I really fucked up like I did the bring this on.

 

[arewenearlythereyet]

I suspect that this will be a condition that will always require vigilance to manage even after going into remission. i spoke to someone the other day who claimed to have had CFS and recovered (mono trigger). When I asked a few more questions though she admitted that she was still managing and pacing so I think some of the 10% are probably in the "margin for error" or are simply telling people what they want to hear. Also anecdotally my sister in law also had CFS and went into remission for 3 years. The whole family was so happy saying she was recovered. A year ago she crashed bad and is worse than back to square one. She said that she always knew that she was still vulnerable but it was easier to go along with what the family wanted to hear. I would be more interested in a stat that says how many people go on to live a "relatively normal life after remission" and another that showed how long remission lasted. I wouldn't consider being bed bound or housebound a normal life, but maybe doing part time or full time work with adaptations and limited leisure activities avoiding aerobic exercise? A stat around this might give a bit more hope and manage expectations rather than a vague maybe 10% " full recovery"? Not sure how we would get to that number though.

 

[nikefourstar]

I suspect that this will be a condition that will always require vigilance to manage even after going into remission. i spoke to someone the other day who claimed to have had CFS and recovered (mono trigger). When I asked a few more questions though she admitted that she was still managing and pacing so I think some of the 10% are probably in the "margin for error" or are simply telling people what they want to hear. Also anecdotally my sister in law also had CFS and went into remission for 3 years. The whole family was so happy saying she was recovered. A year ago she crashed bad and is worse than back to square one. She said that she always knew that she was still vulnerable but it was easier to go along with what the family wanted to hear. I would be more interested in a stat that says how many people go on to live a "relatively normal life after remission" and another that showed how long remission lasted. I wouldn't consider being bed bound or housebound a normal life, but maybe doing part time or full time work with adaptations and limited leisure activities avoiding aerobic exercise? A stat around this might give a bit more hope and manage expectations rather than a vague maybe 10% " full recovery"? Not sure how we would get to that number though.

I heard that from dr kamraoff that that was the pronosis of about 5% 10% but idk I think it depends how the fatigue hit you of how careful you have to be, mine was is weird that it seems like I could snap in out of it just like how I snapped into it. I remember the second it happened no virus no limp nodes swelling just I really weird feel of fatigue like someone flipped a switch I felt spacey and haven't felt the same since

 

[gregh286]

I heard that from dr kamraoff that that was the pronosis of about 5% 10% but idk I think it depends how the fatigue hit you of how careful you have to be, mine was is weird that it seems like I could snap in out of it just like how I snapped into it. I remember the second it happened no virus no limp nodes swelling just I really weird feel of fatigue like someone flipped a switch I felt spacey and haven't felt the same since

I didnt get viral onset or flu, lymph nodes either. Where you doing anything unusual before onset? Extreme exercise training, food poisining , drugs, etc?
I hope you recovery quick, but prepare yourself also in case it lingers, this disease will put you in places you didnt think existed. Its horrific. You need perpetual mental strength and family support.

 

[mars2001]

Hi , I have had cfs/me for around 25 years , and I feel I have approached 90% in recovery . I feel refreshed in the morning and have the stamina to do tasks I never had before . Looking back I tried many interventions and I think the most successful were : modafanil , valacyclovir , low dose prednisone , immunoglobulin infusions for my immunodeficiency that I have had since childhood , many years of allergy shots , Cpap machine for my sleep apnea and most recently moringa oleifera and niacin. I sincerely hope that this info helps someone else alleviate their pain and suffering .

 

[nikefourstar]

I didnt get viral onset or flu, lymph nodes either. Where you doing anything unusual before onset? Extreme exercise training, food poisining , drugs, etc?
I hope you recovery quick, but prepare yourself also in case it lingers, this disease will put you in places you didnt think existed. Its horrific. You need perpetual mental strength and family support.

Can I ask how yours came on since it was a viral onset?

 

[gregh286]

not viral.
mine come on through stress of trading financial markets day in, day out, i believe, come on over a 1-2 year period.
fueled by adrenaline every day,,,,,stuck in fight or flight mode for years.
classic case of yuppie flu. misuse of alcohol and other things.
gulf war syndrome, PTSD, etc all share similar traits to ME/CFS.
Different stressors, but outcome all very similar

 

[SuzieSam]

Don't give up hope @nikefourstar. Please investigate other things it could be, like Lyme etc, and also low B12, folic acid and anemia, if your doctor hasn't already.

So often doctors label people with ME just because they lack the time or skill to investigate properly. It's disgraceful.

It's great that so many people here have found things that help them, but so overwhelming to know where to start! Especially when you can't get out of bed and your brain is malfunctioning!

There is a pinned post in the Treatment forum, (I think), which says how to go about testing for similar diseases.

I'm currently trying to get advice on Rising Phoenix about how best to test for vitamin and mineral deficiencies, and other testable things that we can remedy with supplements.

DON'T GIVE UP! You can get through this. You will get through this. Please don't do anything hasty. I know it feels unendurable. But you're a long time dead, my friend...

 

[Old Bones]

Because if I don't have a prayer of at least improving then there no way I'll make it a year with this disease it's. It's not worth it.

@nikefourstar The anguish expressed in your original post is palpable. I'm rather late to this discussion, and you've already received much valuable counsel. Most of it refers to the prospect of physical recovery. For you, in this moment, it's probably more important to focus on the potential for emotional recovery. Based on my experience, this is achievable.

Others on this forum know I'm among the longest-ill members. Yet, I consider my current life to be worthwhile. But that wasn't always the case. A year after the viral infection that precipitated my decline, I described my life over a period of several months as "working, sleeping, and crying". I struggled to keep going, not only because of severe physical symptoms (PEM and NRS, as you've described), but especially because of the emotional instability. This was uncharacteristic for a previously calm and generally content person, and terrifying. It was like I'd changed into an entirely different person.

Like you, had I contemplated living the rest of my life in such a state, I wouldn't have thought it worth it. Fortunately, my emotions returned to baseline, without intervention. These days, my physical limitations are even greater than they were during my emotionally-unstable phase. Yet, I'm almost always able to find something to be grateful for.

People are amazingly resilient. Most will adapt to changed circumstances with a bit of time, and reach a state of acceptance. This doesn't mean you will be, or even need to be, happy with your new "lot in life". But, you may find yourself spending less time contemplating your losses, and more time just "being". And as others have mentioned, there is more reason now than ever before to be optimistic.

You mentioned having a loving family. Have you discussed, really discussed, your concerns with them? If not, may I suggest you do so.

Most of all, be gentle with yourself. Welcome to the forum. I sincerely hope you become an active member -- someone who will share in the excitement of the discoveries about ME we know are just around the corner. Hang in there -- things will get better for you.

 

[justy]

good friend of mine seemed to fully recover, and went back to a productive life. It only lasted a few years. The relapse has been ongoing many years with no signs of recovery. Other long term patients have said much the same thing to me.

That's me exactly.

 

[Sidereal]

I don't doubt that a restoration of relatively normal function is theoretically possible even in long-term patients but I doubt that the underlying disease/vulnerability ever truly goes way and I must admit that I wince when I hear relative newcomers to this illness say that they are recovering. Maybe so but it's best to stay cautious and manage one's expectations.

I thought I had recovered a few years after my first moderate bout in mid-teens. So many young people and their parents (and opportunistic charlatans like Crawley) think they're recovered just because they're restored enough to be able to go to university, live independently, get married etc. I was one of those people. If you had asked me when I was 19 I would have said I'm in remission but in hindsight of course I was only functioning at 85-90% level which is well enough to lead a normal life but not well enough to endure years down the line a few years of severe mental and physical overexertion (combined with dietary restrictions) which led to a crash 100x more severe than the first one.

 

[Sandman00747]

That's me exactly.

I am unfortunately a member of this club too! But the odd thing is in all my years of remission I could always still feel this beast lurking inside me. It's hard to put into words, but I just knew I was still ill / infected, whatever. So, when the recurrence came I was not shocked. Yes, I was greatly upset and madder than hell, but not shocked!

 

[Sidereal]

I am unfortunately a member of this club too! But the odd thing is in all my years of remission I could always still feel this beast lurking inside me. It's hard to put into words, but I just knew I was still ill / infected, whatever. So, when the recurrence came I was not shocked. Yes, I was greatly upset and madder than hell, but not shocked!

Same here. Just this inexplicable sense that I was not quite like other people, that I needed to be more careful or something. When it came back it was devastating but not at all surprising.

 

[Sandman00747]

Same here. Just this inexplicable sense that I was not quite like other people, that I needed to be more careful or something. When it came back it was devastating but not at all surprising.

Sidereal, you are like my doppelganger. I could not think of better words or way to word it! You description stood the hair up on the back of my neck! I knew somehow that I still was not exactly like other people and needed to take a little more care of myself just like you said!

I wonder how many others are like us? And, I really wonder if the people who say they are "cured" harbor these same or similar feelings too? I would really like to know!

 

[perrier]

I am nearly recovered after 25 years of severe M.E. (a low of completely being bedridden to a significant time of being bedridden for 20 hours). Prior to that time, I had CFS for many years. I work a full time job now and do significant work at home. The help I received was and is from natural remedies that I found via the 25,000 hours of research. If you need help, then let me know.

Please tell us how you recovered.

 

[Dechi]

I have made it better.
I would say I am 90%+ functional. Pretty much no limitations.
I have CFS since 2012.
Only recovered last year but was a slow process.
I have been a member here quite some time.
I was moderate maybe a 40/100 on a bad day and 60 on a good day. Pretty much housebound but not bedbound. There were days I thought I could die......other days I wish I would.
I remain on PR because I like to read about need discoveries and how close they are.to find root cause.
I used amino acids to get me to 75/100. Ldn from November put me to 90.
Don't give up....one year can make massive difference.
This time.last year I was a mess. Recovery not start until February.

I think CFS is an autoimmune reaction to stress/cortisol/adrenaline that causes the breakdown of the PDH pathway....IMHO.

This stress can take any format......infection....viral....menopause...gluten reaction......adrenaline junkie.....chemical sensitivity.....etc. hence wide range of subjects on PR.

Don't give up I fought it long and hard for 4 years.
I also have a friend in Scotland who fully recovered also using LDN and vitamin d.
We do exist.

@gregh286 which exact brand of amino acids do you buy ?

 

[Sidereal]

Sidereal, you are like my doppelganger. I could not think of better words or way to word it! You description stood the hair up on the back of my neck! I knew somehow that I still was not exactly like other people and needed to take a little more care of myself just like you said!

I wonder how many others are like us? And, I really wonder if the people who say they are "cured" harbor these same or similar feelings too? I would really like to know!

Many people I've met on these forums seem to have this amazingly good intuition/instincts about our bodies and capabilities. People with regular diseases are sometimes the exact opposite, blissfully unaware of the damage they might be doing to themselves by pushing & overexerting themselves. Of course this has made us the target of abuse by some psychiatrists who think we're just being neurotic and focus too much on irrelevant bodily sensations. I suspect that this increased interoceptive awareness is actually beneficial in terms of survival with our extreme energy limitations and relates probably to the dysautonomia and brain stem dysfunction we have. My body sends me so many signals about all sorts of things that "normal" people never experience and are just baffled by when I talk about them.