Who are the 10% that get better

[SK2018]

The group that stays as far away as possible from CBT and GET

 

[Mohawk1995]

On the other hand, my impression is that the recovery rate is less than 10%. My own view actually is that it is 0% for those who meet the Canadian criteria.

This is a very difficult thread to read and respond to. I want to be sensitive to those who have struggled for years and also those newly diagnosed while at the same time giving you my reason for hope. I did not suffer from this disease, but my son did. He started having daily massive headaches (at the age of 13) that would only go away (to a degree) by sleeping until 3 pm and then he went back to sleep at 9 or 10 pm. We are confident this came on after a viral infection. We pursued treatment for "atypical migraines" for 4 years. Being in the health care field, I just kept having the feeling that something did not line up. He was up and down with his symptoms, but always had brain fog and fatigue. He was a good student and a really good athlete and he attempted to continue to play sports through this time period with baseball being the only sport he could keep playing during the summer until he was 16. He then had to quit that as well.

As for Canadian Criteria:
1. Fatigue: Our son had significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level. (Eventually relegated him to being home bound most of the time)
2. Post-Exertional Malaise and/or Fatigue: Our son had severe crashes. These were made even more so when he tried to do off season conditioning for baseball. Crashed anywhere from 3 days to 2 weeks in duration.
3. Sleep Dysfunction: Slept 12-16 hours. Rarely woke up refreshed. Had weird teeth grinding, very fitful sleep and was diagnosed with Periodic Leg Movement Disorder.
4. Pain: Initial primary pain was disabling Headaches. Also had unusual pain in legs.
5. Neurological/Cognitive Manifestations: He had brain fog, memory issues, difficulty concentrating, inability to sustain cognitive activity and was unable to complete High School.

The Good News: He is now over 3 years out from treatment by Dr Lerner. He would say that he is fully functioning and that his recovery began with the Anti-viral infusion he received (that I have posted on other posts). It has taken an additional 3 years. He is now a full time college student getting As and Bs, he works out on a regular basis, is active socially, he sleeps much better and rarely takes naps. We as his parents still get nervous when he gets sick or when he appears to be struggling with being down, but he is now rebounding and not crashing like he did before.

I share this only to provide hope and our experience. We (and he especially) knows that his case is a rare one. We did the same types of treatments that others have done. We are no more worthy of this happening then anyone else. It breaks our hearts to see what this disease has done personally to others and we are now in the early stages of seeing how we can best help others in this fight.

But why do you think now is going to be the time when they find a treatment? Haven't you been hopeful over the past 10 years I'm sure? Why is now so special?

@nikefourstar I think my son could relate to you. We were often on the edge with him and he went to receive counseling from someone who understood what he was going through and did not try to fix it with CBT or GET. He simply supported him and helped him cope. He still sees "Dr Jim" on occasion to continue to deal with life and the after effects of having ME/CFS for years.

Why I have hope now? Because of the research currently being done on the Biochemical, Molecular, Metabolite and Neuroscience fronts. There are common threads that are coming together that fit what the presentation of this disease looks like. Whenever we can identify things that line up with what we are actually seeing (Laboratory Science aligning with Clinical/Empirical Science) we are getting much closer to understanding this disease. You are right to be skeptical because this is a devastating disease of which few have recovered from. I also have hope because of the human spirit and the will to keep fighting that amazes me with so many people on this website. Lastly I have hope because at least right now our son seems to be doing well and is able to live life. That is our hope for every person who suffers from this.

Again this post is only meant to provide encouragement. We have and remain incredibly humbled by this process and by the spirit of the people who suffer from this disease and the people who care for them.

 

[otherworldly]

I find there seems to be an awful lot of gym bunnies in this forum or tri athletes, distance runners, etc.
So many health conscious people come down with CFS. Bizarre.

not bizarre @ all. exercise is not synonymous w/health. keep in mind that some kind of stressor, whether virus, surgery, vaccine, etc, preludes this disease, & exercise is certainly a huge stressor, esp. if diet isn't supportive in relation 2 activity. also some ppl who exercise r adrenalin junkies, while many others just over do it & push themselves 4 all sorts of reasons.

 

[maybe some day]

This is a very difficult thread to read and respond to. I want to be sensitive to those who have struggled for years and also those newly diagnosed while at the same time giving you my reason for hope. I did not suffer from this disease, but my son did. He started having daily massive headaches (at the age of 13) that would only go away (to a degree) by sleeping until 3 pm and then he went back to sleep at 9 or 10 pm. We are confident this came on after a viral infection. We pursued treatment for "atypical migraines" for 4 years. Being in the health care field, I just kept having the feeling that something did not line up. He was up and down with his symptoms, but always had brain fog and fatigue. He was a good student and a really good athlete and he attempted to continue to play sports through this time period with baseball being the only sport he could keep playing during the summer until he was 16. He then had to quit that as well.

As for Canadian Criteria:
1. Fatigue: Our son had significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level. (Eventually relegated him to being home bound most of the time)
2. Post-Exertional Malaise and/or Fatigue: Our son had severe crashes. These were made even more so when he tried to do off season conditioning for baseball. Crashed anywhere from 3 days to 2 weeks in duration.
3. Sleep Dysfunction: Slept 12-16 hours. Rarely woke up refreshed. Had weird teeth grinding, very fitful sleep and was diagnosed with Periodic Leg Movement Disorder.
4. Pain: Initial primary pain was disabling Headaches. Also had unusual pain in legs.
5. Neurological/Cognitive Manifestations: He had brain fog, memory issues, difficulty concentrating, inability to sustain cognitive activity and was unable to complete High School.

The Good News: He is now over 3 years out from treatment by Dr Lerner. He would say that he is fully functioning and that his recovery began with the Anti-viral infusion he received (that I have posted on other posts). It has taken an additional 3 years. He is now a full time college student getting As and Bs, he works out on a regular basis, is active socially, he sleeps much better and rarely takes naps. We as his parents still get nervous when he gets sick or when he appears to be struggling with being down, but he is now rebounding and not crashing like he did before.

I share this only to provide hope and our experience. We (and he especially) knows that his case is a rare one. We did the same types of treatments that others have done. We are no more worthy of this happening then anyone else. It breaks our hearts to see what this disease has done personally to others and we are now in the early stages of seeing how we can best help others in this fight.



@nikefourstar I think my son could relate to you. We were often on the edge with him and he went to receive counseling from someone who understood what he was going through and did not try to fix it with CBT or GET. He simply supported him and helped him cope. He still sees "Dr Jim" on occasion to continue to deal with life and the after effects of having ME/CFS for years.

Why I have hope now? Because of the research currently being done on the Biochemical, Molecular, Metabolite and Neuroscience fronts. There are common threads that are coming together that fit what the presentation of this disease looks like. Whenever we can identify things that line up with what we are actually seeing (Laboratory Science aligning with Clinical/Empirical Science) we are getting much closer to understanding this disease. You are right to be skeptical because this is a devastating disease of which few have recovered from. I also have hope because of the human spirit and the will to keep fighting that amazes me with so many people on this website. Lastly I have hope because at least right now our son seems to be doing well and is able to live life. That is our hope for every person who suffers from this.

Again this post is only meant to provide encouragement. We have and remain incredibly humbled by this process and by the spirit of the people who suffer from this disease and the people who care for them.

Thanks for posting, awesome that your son recovered. I agree it's a sticky subject. I thought after 5 years I would be recovered. 5 turned to 26 and counting. I feel that full recovery is extremely rare. Recent research does look promising as you mentioned.

 

[XenForo]

...
my biggest nightmare is nightmares.
total setback when i have those.

A few of us find that nimodipine helps with panicky nightmares. (Although it doesn't seem to help me with CFS much if any.)

 

[user9876]

The Good News: He is now over 3 years out from treatment by Dr Lerner. He would say that he is fully functioning and that his recovery began with the Anti-viral infusion he received (that I have posted on other posts). It has taken an additional 3 years. He is now a full time college student getting As and Bs, he works out on a regular basis, is active socially, he sleeps much better and rarely takes naps. We as his parents still get nervous when he gets sick or when he appears to be struggling with being down, but he is now rebounding and not crashing like he did before.

Glad your son is getting better.

I think it has been said that children do seem to have a greater chance of recovery particularly within the first few years. But I've seen no real systematic evidence of this (or to the contrary).

 

[Alvin2]

I suspect the 10% are those who don't have ME/CFS at all or a parallel condition that has similar symptoms but has a treatment or self resolves. It may even be a statistical artifact.

The group that stays as far away as possible from CBT and GET

Aint that the truth, those CBT people are like cultists, they believe in their miracle cure no matter how badly it fails. In fact it could be a cult, they sacrifice reality for their nonsense ideology (beyond the scope of CFS, they think they can cure almost any psychological disorder)

 

[maybe some day]

I suspect the 10% are those who don't have ME/CFS at all or a parallel condition that has similar symptoms but has a treatment or self resolves. It may even be a statistical artifact.


Aint that the truth, those CBT people are like cultists, they believe in their miracle cure no matter how badly it fails. In fact it could be a cult, they sacrifice reality for their nonsense ideology (beyond the scope of CFS, they think they can cure almost any psychological disorder)

I read that post a few days ago but forgot to ask at the time..who are CBT and GET

 

[Alvin2]

I read that post a few days ago but forgot to ask at the time..who are CBT and GET

They are not people, CBT is a talking "therapy" that essentially posits that if you ignore your problems they will go away. GET is a treatment that believes in gradually increasing levels of exercise to "fix" ME/CFS, and it not only doesn't work but often ME/CFS worse permanently.

Though one could argue CBT and GET are the PACE study authors, they created a fake study to legitimize their lies and foist them on ME/CFS patients as a method of revictimization.

 

[maybe some day]

They are not people, CBT is a talking "therapy" that essentially posits that if you ignore your problems they will go away. GET is a treatment that believes in gradually increasing levels of exercise to "fix" ME/CFS, and it not only doesn't work but often ME/CFS worse permanently.

Though one could argue CBT and GET are the PACE study authors, they created a fake study to legitimize their lies and foist them on ME/CFS patients as a method of revictimization.

Got it..thanks for clarifying, yes I remember the bogus PACE

 

[EtherSpin]

I have seen that, but I'm new and I guess I didn't know how much the evidence was lacking just a couple of years ago. But hasn't he been working on the cause and treatments for years now? What makes now his time to find something? And how good do you think these treatments will work? If I could get back to just a fraction of what I could do before and didn't have unfreqshioned sleep I could live a good enough live where I would be content and count my blessings. I'm at a real low right now I have never been so scared in my life, it almost doesn't seem real.

I've been sick since 07-ish but didn't realise what it was till 2010 or so ( its "-ish" and "or so" because I didn't want to believe it was CFS when I probably knew it was!) and the speed of discovery of new information seems to have doubled in that time even though I no longer have the cognition to keep up.
I have a couple of predictions about CFS and they seem to be coming to pass - I imagined/fantasised about treatment centres that give you a group of treatments while you get some kind of blood filtration not unlike what renal patients need to sit through - taking away waste products from broken energy cycles, infusing as many beneficial compounds in as much quantity as our bodies will utilise whilst getting a drug infused (along the lines of rituximab) and then intramuscular injections of peptides like folistatin and thymosin to make sure we keep every strand of new muscle we inadvertently make.
I could see stuff like this on the horizon with the OMF/Ron Davis stuff in concert with Naviaux's work and Fluge + Mella.

my other prediction was that there will be a tipping point where people will realise there are breakthroughs to be made and researchers with no skin in the game will jump onboard the CFS research train - without naming names I think its happening - far too often we are being told that CFS is *now* to be considered a real condition with concrete biological problems and then.. repeat in 6 months, some people are framing their stuff as the research to end all and they are the same people who also have a little too much sympathy for doctors who say CFS is imaginary

 

[antherder]

I imagined/fantasised about treatment centres that give you a group of treatments while you get some kind of blood filtration not unlike what renal patients need to sit through - taking away waste

Have you ever heard of any studies that have done this? Put CFS/ME patients on dialysis to see if they improve? If so, does anyone have any links? If not, it would be interesting, wouldn't it.

If they did improve, I wonder if they could look at the waste that was filtered out, and compare it to the "cleaned" blood, to try and narrow down the problem. Don't know anything about dialysis, so just thinking out loud here...