Is there a healing process in ME/CFS?

[Tuha]

I would like to ask you a question. Do you think that there is a healing process in ME/CFS? I got it in 2000. First it wasnt that bad I worked full time till 2008 but after ignoring it all that time I crashed badly and except small walk and 1 hour behind my computer I had to stay almost only in my bed for almost 2 years. But then I started to recover slowly during the 8 years periode. At first I tried some treatements like ATB, antivirotics, probiotics. I dont know if it helped because the recovery process went very slowly. Now I dont take anything (expect 2-3 supplements) for 5 years but I still recover slowly.

Now I can walk 1-2 hours without problem and work 4 hours a day. Does anyone has the same experience? Is it possible if you give your body good conditions (I am succesfull with avoiding crashes) it can slowly heal?

 

[lansbergen]

Is it possible if you give your body good conditions (I am succesfull with avoiding crashes) it can slowly heal?

I think it can.

 

[hixxy]

Well my experience being housebound for 5 years is that I've only deteriorated in this time. I dream of the day I will stabilise and not keep collecting new, often disturbing symptoms.

 

[cman89]

I do believe there is, but research suggests that ME/CFS is a type of neural malfunction illness, presenting with a wide range of symptoms, but in some way, connected to the neuroimmune system. One can treat each symptom and see possible relief, and perhaps spontaneous healing is more common than we may perceive, but the level of malfunction is to a level in ME that level of disability can be quite high. Also, given the nervous system's central role in almost all bodily processes, many organs can be affected. Unfortunately, neural illnesses can be difficult to address, and ME is as if you combined the symptom variance of MS with the wide variety of triggers of say, many cancers. This does not mean that there is not hope, but ME treatment is very systemic and unfortunately has to be tailored to the individual. Medicine isnt quite there yet with the level of tech required. BUT, we are close, and the internet alone is a great resource for patients , as confusing as things can be.

 

[cman89]

I think if we think of ME as less of an illness and more as a malfunction syndrome, then some of the processes ,make more sense.

 

[*GG*]

I would like to ask you a question. Do you think that there is a healing process in ME/CFS? I got it in 2000. First it wasnt that bad I worked full time till 2008 but after ignoring it all that time I crashed badly and except small walk and 1 hour behind my computer I had to stay almost only in my bed for almost 2 years. But then I started to recover slowly during the 8 years periode.

At first I tried some treatements like ATB, antivirotics, probiotics. I dont know if it helped because the recovery process went very slowly. Now I dont take anything (expect 2-3 supplements) for 5 years but I still recover slowly.

Now I can walk 1-2 hours without problem and work 4 hours a day. Does anyone has the same experience? Is it possible if you give your body good conditions (I am succesfull with avoiding crashes) it can slowly heal?

How do antivirotics differ compared to anti-viral meds?

GG

 

[alicec]

Is it possible if you give your body good conditions (I am succesfull with avoiding crashes) it can slowly heal?

First time around I would have said yes. I did gradually recover and while I was never able to be as physically active as I once had been, I was still able to pretty much lead the life I wanted to - including a lot of travel and learning a new language. I would call it definite remission.

When I crashed again it never occurred to me that I wouldn't eventually recover to at least some extent. Four years later, much as I don't like to admit it, I am forced to conclude that I am steadily getting worse.

Looking after myself carefully is just not enough to break the cycle, though it might make it a bit easier to manage the disease..

 

[CFS_for_19_years]

I think in the first few years there is a healing process, one that enabled me to work part-time from home for a number of years, but nothing like the full-time job working on my feet I'd done previously.

Unfortunately, I've lost any gains I've made. Even though I have fewer flu-like symptoms now (no sore throats, fever, etc.), I'm much more fatigued and am now housebound. Five years ago I was driving 2-3,000 miles a year. Now I'm driving 300 miles/year and having prepared meals delivered to my home. I wouldn't have needed that five years ago.

I didn't see this recent decline coming. I want everyone to be aware of it. It happened about 20 years into my illness.

 

[taniaaust1]

Is it possible if you give your body good conditions (I am succesfull with avoiding crashes) it can slowly heal?

I see it like any illness, if you can get as many things as optimum as possible for ones health, one has more chance of slowly healing but if there are things which are there which make it harder for the body to heal, it will be harder to heal.

Anything bad for ones health isnt going to be an aid in ME recovery and could hinder it.

 

[taniaaust1]

I didn't see this recent decline coming. I want everyone to be aware of it. It happened about 20 years into my illness.

I think we can suddenly be hit with a decline at any time with this illness, even those who may be on an improving path with it. So many different things can just suddenly make it worst. Some things with it seem to come down with luck eg if I hadnt caught a virus and then not been able to rest while I had it when in remission, I may not have got ME again.

Though I seem to have noticed that those who have had it long term eg over 9-10 years, are more likely to get severe medical complications from it.. its the long term ones who seem to actually end up dying from this illness not those who have only had it for 6 or less years.

 

[lansbergen]

Though I seem to have noticed that those who have had it long term eg over 9-10 years, are more likely to get severe medical complications from it.. its the long term ones who seem to actually end up dying from this illness not those who have only had it for 6 or less years.

As I said before I was dying and I have no doubt if I had not started taking the immune modulator I would have died a long time ago.

 

[Justin30]

its the long term ones who seem to actually end up dying from this illness not those who have only had it for 6 or less years.

So what do think s the case that if you treat it early and take care of yourself that you have a better chance at long term recovery?

I mean like using drugs and rest to help yourself heal?

Thanks

 

[lansbergen]

So what do think s the case that if you treat it early and take care of yourself that you have a better chance at long term recovery?

I mean like using drugs and rest to help yourself heal?

Yes

 

[justy]

Now I can walk 1-2 hours without problem and work 4 hours a day. Does anyone has the same experience? Is it possible if you give your body good conditions (I am successful with avoiding crashes) it can slowly heal?

Like @alicec I did get well enough to call it a remission the first time I was ill - it lasted about 8 years and was to about 90% normal functioning. I didn't do anything to get to that point other than lots of rest and sleep, some acupuncture, lots of hot baths (I was living in a very cold apartment) and a weekly massage by an aromatherapist friend.

Eventually I caught a nasty virus from my kids, developed pneumonia that didn't clear up for over a year and then had a minor operation. I was supposed to be able to go back to work the next day, but never did - couldn't even get out of bed for three weeks. Then it all began again, much the same as the first time, but much more severe. I'm 8 years into the severe relapse now and show no signs of getting any better. I am mainly housebound, have to use a wheelchair to be able to go out and often use it in the house now as well. I would consider my self at about 25 -30%, with the odd better day here and there.

 

[taniaaust1]

So what do think s the case that if you treat it early and take care of yourself that you have a better chance at long term recovery?

I mean like using drugs and rest to help yourself heal?

Thanks

My belief is the less sick one is the more chance one has probably got of recovery.. less complications etc etc (so treating it earlier I guess plays a part with that). From my own experience it is easier to heal and make bigger health gains when one is less sick with this then when one is at a sicker point.

I think the most common thing which happens is ME people over do things and dont rest enough early in this illness leading to worsening states. By the time they realise not resting enough is a problem for them they are worst.

As far as treatment goes, I think you would agree, that is really a hit or miss thing as we all seem to need different things. I wish I could trial that drug which kills off the B cells which seems to help some of us but we know it doesnt help all. I dont know why but I keep feeling like that one may help me.

 

[taniaaust1]

Like @alicec I did get well enough to call it a remission the first time I was ill - it lasted about 8 years and was to about 90% normal functioning. I didn't do anything to get to that point other than lots of rest and sleep, some acupuncture, lots of hot baths (I was living in a very cold apartment) and a weekly massage by an aromatherapist friend.

Eventually I caught a nasty virus from my kids, developed pneumonia that didn't clear up for over a year and then had a minor operation. I was supposed to be able to go back to work the next day, but never did - couldn't even get out of bed for three weeks. Then it all began again, much the same as the first time, but much more severe. I'm 8 years into the severe relapse now and show no signs of getting any better. I am mainly housebound, have to use a wheelchair to be able to go out and often use it in the house now as well. I would consider my self at about 25 -30%, with the odd better day here and there.

My situation is very like justys. I had a remission through aggressive rest therapy (I didnt get medical care as drs abandoned me). My remission 100% lasted 2-3 years. I then caught a virus going around (it wasnt even a bad one, it was just like a normal cold virus so I didnt rest up while I had it) but that triggered the ME/CFS for me again. Now Im basically housebound and using a wheelchair.

Take care even though you are doing better, always try to avoid ME common ME triggers which are known to trigger ME and if you have one, rest more.

 

[cman89]

another thing that people have mentioned is oftentimes the biggest leaps in treatment come from drugs that do major alterations to one's physiology, like Rituximab wiping out B cells, etc...so until it comes to that ,recovery may be very piecemeal and incomplete.

 

[lansbergen]

another thing that people have mentioned is oftentimes the biggest leaps in treatment come from drugs that do major alterations to one's physiology, like Rituximab wiping out B cells, etc...so until it comes to that ,recovery may be very piecemeal and incomplete.

Yes very slow improvement.

For the incomplete, if it is the infection I suspect there always be some agent left but that does not need to be a bog problem as long as the cell machenery can control it.

 

[CFS_for_19_years]

I think one thing that helped me heal somewhat in the first few years of my illness was seeing a naturopath on a regular basis to get chronic sinusitis under control. Once the sinusitis was under control we moved on to other ways to strengthen my immune system. I think I saw her every ten days for a year or two.

If one has the means, I would recommend seeing a naturopath in the first years of one's illness to get out of the worst symptoms that occur early on.

 

[Justin30]

So heres a question that I am interested in were symptoms much worse in the begining then subside over time.

Like have the weird neuro ones sunstantial imporved or gone away like the twitching, blurred vision, jerks, etc?