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Who are the 10% that get better

JES

Senior Member
Messages
1,323
I haven't had a diagnosis yet but I have PEM and NRS what other illnesses out there have these two factors, plus I feel worse then when I did when I first felt something was way off? I have pretty much gone crazy about this. All my dreams are gone. I really just wish I had enough energy to be with my family. And I don't think I can stick around long enough to wait for a treatment or cure

You said in another thread that you can still do push-ups without getting worse the day after. If you can do that, your PEM might not be like in CFS, as hundreds of other diseases also cause fatigue and insomnia. The thing that is specific to CFS PEM is that you don't recover even from the slightest physical exertion. Don't get me wrong, fatigue is horrible, but you should rule out other treatable diseases like Mycoplasma, Lyme, etc.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
But why do you think now is going to be the time when they find a treatment?
Because the research is very close to finding answers.
Why is now so special?
Have a look at the Latest ME/CFS research section of the forum--it is very impressive. We have never had such impressive, tier 1 researchers working on this disease and they are making a great deal of progress.
I'm just wondering I'm just really fucking scared and didn't get to do anything in life yet that I wanted to do.
I think we can all understand the scared part as it is a natural reaction to getting a debilitating set of symptoms--we've all been scared--over and over again. And many here can identify with the feeling of having no future. We are just trying to tell you that 30 years ago that was a reasonable fear--but it isn't today.
 
Messages
85
If you truly believe that
Because the research is very close to finding answers.
Have a look at the Latest ME/CFS research section of the forum--it is very impressive. We have never had such impressive, tier 1 researchers working on this disease and they are making a great deal of progress.
I think we can all understand the scared part as it is a natural reaction to getting a debilitating set of symptoms--we've all been scared--over and over again. And many here can identify with the feeling of having no future. We are just trying to tell you that 30 years ago that was a reasonable fear--but it isn't today.
If you truly believe that then I will try and stick around as long as I can
 
Messages
85
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.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque

David Jackson

Senior Member
Messages
195
So I have done a lot of research on cfs for a couple months now and it seems like the leading doctors say there is up to a 10% chance for someone with this to recover. Who are these people??

I'm not completely sure of the 'how' and 'when', but I am sure that I am going to be one of this 10%. ;)

And when I do recover, I am going to let the people with CFS know how I did it, so they can try what worked for me, and see if it will help them too. Because I don't like the thought of people suffering with this disease like I have. :hug:
 

LINE

Senior Member
Messages
843
Location
USA
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.
 

Forbin

Senior Member
Messages
966
At a lecture he gave in December 2015, Dr. Bell was adamant that 5% of his patients do recover. He was clear that these cases were no different from the other cases he had studied. He had no explanation for their recovery.
- - -
Question: "The 5% that may be recovered... since there isn't a lot of testing done yet, could it be that those 5% don't even really have SEID, or CFIDS, or Iceland Disease or whatever you want to call it?"

Dr. Bell: "Yeah, but I don't think so."

Question: "You do think that 5% might actually recover?"

Dr. Bell: "Oh, yes."

Question: "Oh, really?"

Dr. Bell: "Yeah. That's something that I've looked at very intensely over the years... I wanted to know what did they do that was different - that caused them to recover. Did they exercise more, or less; did they take more vitamins, less vitamins; did they eat better?

"Now Lyndonville is a very small area, and I was the only physician in the area - so I kind of had a lock on these patients - and I was nice to them - I tried to be nice. And after looking at this, about half of the patients ate terribly. You know, they'd go to McDonald's every once in a while - and the other half ate meticulously - very good foods - and I didn't see any difference. Half of them had lots of vitamins, half of them did not... So I couldn't tell.

"But what I was quite sure about was that they had the same illness. So, I had lots of ways of measuring the severity, measuring the complexity of the symptoms. For example, I was very intent on measuring the degree of lymph node tenderness. That's an unusual symptom - so that if you have rheumatoid arthritis, that's not one of the things that would happen. So I'm quite sure they all had ME/CFS and there was a subset that clearly did get better."

Question: "And you never had any inkling of what it was? [That caused them to recover]"

Dr. Bell: "Not an inkling - -"

[See at 46:52 in the video. He mentions the 5% recovery rate earlier in the lecture as well.]

 
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Dainty

Senior Member
Messages
1,751
Location
Seattle
I am also a recovering patient. I've had about 5 solid years of recovery so far and every expectation that it will continue. I was mostly bedridden for several years and diagnosed according to the Canadian Consensus Criteria, which I matched "about five times over" as my mom would say.

In a nutshell, cranial osteopathy is what helped me the most. It's extremely gentle manipulation to address structural issues that interfere with the body's self-healing mechanism. If interested, here's where you can find more info on the modality, and here's a good starting point to find a practitioner. I'd recommend only going with one who practices it on 100% of their patients.

I began getting these treatments for symptom relief, not for a cure. But what it did is make it possible for my body to rest deeply. And that, it turns out, is a key essential ingredient for healing.

I wish I could say that was the only essential factor, but that's not really the way osteopathy works. When your body starts healing, it gets pretty loud about any obstacles in its way. And if you don't address those obstacles, your healing stops. But doing so turns your life upside down and inside out in very difficult ways. There are often emotional and behavioral factors contributing to the physical structural issue. But you never really know it until it surfaces. Cranial osteopathy brings that sort of thing to light, and you either accommodate it, or your body's healing does not progress.

It's really hard to describe for those who haven't experienced it. My boyfriend, who doesn't have CFS/ME but does have various other health issues, is going through the same process right now with cranial osteopathy. "It really flips something", is the best he could describe it, when I asked him to compare the effects of this treatment to his previous efforts to take care of his health. With cranial osteopathy, if you slow down, if you let it work, it forces you to change in ways you never imagined you had to change. And this is why I can't just mention the treatment, because if you don't listen to your body and change in the ways your body recommends, cranial osteopathy can't do much for you.

I don't think I could have done it without some really amazing people being my support system. I ended up giving up most of my religion, my "status" as some super-spiritual guru highly respected amongst hundreds or thousands of religious conservative "fans", and pretty much my entire approach to life. I spent years re-learning how to exist in a way that nurtured my health. In exchange, I'm well enough to work odd jobs and most days are almost completely symptom-free.

I'm happy to talk to people about it, but I'm not looking to convince anyone. I was initially told about it by someone here on PR all those years ago, and I'd love to pay it forward by helping others if I can. I'm not well yet, but I'm getting there. I don't know yet if this treatment holds all of the answers for me, but it's sure making a hell of a difference and I'm happy with the results so far. :)
 

David Jackson

Senior Member
Messages
195
In a nutshell, cranial osteopathy is what helped me the most. It's extremely gentle manipulation to address structural issues that interfere with the body's self-healing mechanism.

@Dainty, could you please give me a real quick definition/idea of what you mean by "structural issues" here?

And, thanks for posting that whole thing, btw.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi, I do believe that some people naturally recover. In my anecdotal experience these tend to be younger people, and younger males more so. I had M.E at a younger age and made a near full recovery after about three years. Then I had about 10 really good, almost normal years. Unfortunately 8 years ago I had measles, followed by pneumonia and the whole thing started up again, but this time much worse and I now am mainly severely affected - housebound, wheelchair user and have developed MCAS, which is a whole new level of hell.

I have also had severe anxiety at the beginning of this severe relapse so I know how awful that can be, that has now completely left me, thank god, and I feel so lucky to no longer have it.

I also found a really good M.E Dr - there are some in the US and a couple in Europe, and he found many underlying issues that we are trying to treat - I have met many of his patients who are and have improved massively with treatment - but not yet cured. But as Sushi says that is on its way!

You mention in your post that you have the usual symptoms of PEM and NRS - what is NRS?
 

Dainty

Senior Member
Messages
1,751
Location
Seattle
@Dainty, could you please give me a real quick definition/idea of what you mean by "structural issues" here?

Great question. Not so simple to answer, but I'll do my best.

There are many things that fall under this broad category. The most obvious example most people are familiar with is bones being out of alignment. Lesser known examples would be bones being the wrong shape, or bones being way harder than they're supposed to be. The first time my current osteo felt my head, he turns and tells my then caregiver: "She's literally hard-headed." If bones are too hard, or the wrong shape, it can cause a lot of strain on the body. With osteopathy, bones can soften back up again and literally change their shape back to what works for the body. My boyfriend's ribcage is actually pretty significantly deformed from countless street fights in his earlier days, it's visually shocking to anyone who saw it. Osteopathy is restoring his ribcage to normalcy. It's incredible to witness (and extremely painful for him, at times!)

But that's not the only kind of structural issue. The fascia is incredibly important to pretty much all functions of the body. It envelopes every organ, muscle, bone, etc and carries lymph fluids and makes sure things glide against each other smoothly. Lots of other important functions I'm not remembering at the moment. Fascia can get "wrinkles" in it, if you can imagine how saran wrap gets wrinkly and sticks to itself. When that happens with fascia, it causes problems. I have fascia adhesions in my abdomen, which results in abdominal tightness, G.I. emergencies that send me to the hospital, severe menstrual cramps, etc.

Fascia can also simply be stretched too thin or too tightly over an area, because it's being pulled by a structural problem elsewhere. So for example, I've read that people with carpal tunnel syndrome often have strains in their torso literally pulling the fascia like a long sleeve shirt, so that it's stretched tight against the wrists. Combine that with a lot of repetitive use, and you have carpel tunnel.

Finally, there's this thing called the Primary Respiratory Mechanism. It's a "pulse" that originates in the cerebralspinal fluid in your spine and head, and radiates to the rest of the tissues of the body. it is believed to play a very significant role in the body's self-healing and health maintenance. It's controversial, but whatever. Osteopaths feel for this pulse. If there's any part of the body where they cannot feel this pulse, they know there is some structural issue blocking the pulse from reaching that part of the body. Just like if someone had a severe injury to their arm, you would feel for a pulse and try to determine where the issue is affecting the pulse. the goal is to restore natural flow and movement.

Without movement, the human body locks up and begins adhering to itself. If you immobilized a joint long enough, the joint would freeze, right? imagine that happening in various ways, all over your body. The "pulse" of the primary respiratory mechanism gives regular movement on a very small level to all the tissues in the body, or at least it's supposed to. And when that gets blocked by trauma, be it physical or emotional, be it acute or chronic, or whatever, then lots of things can go haywire.

My legs were, to quote my osteo, "dead". The "pulse" of the primary respiratory mechanism hadn't reached them for a very, very long time.

A final point: osteopaths don't try to treat all structural issues. Only the ones that are actively causing problems. They can tell if it's a strain on the body or not, unlike many other structural modalities (e.g. chiropractics). Also, osteopathy isn't about fixing the body. It's about supporting the body's efforts to fix itself. So rather than move a bone into place, the osteo might gently work the soft tissue around the bone in such a way that frees it up, and 2 days later as I get up from a chair suddenly the bone pops into place all on its own. It's so freakin' cool.

I hope that helped, sorry for the length!
 

arewenearlythereyet

Senior Member
Messages
1,478
Hi @nikefourstar. I can understand your frustration but please don't give up hope. We have all been to dark places, but where there's life there's hope. Corny I know, but a lot of what your are feeling (hopelessness) is more than likely a symptom of your dysfunctional metabolism. Please have a look at methylation on this site and ask your doctor for some blood work. He has to do this in any case to get you a diagnosis. It might be that the hopelessness you are feeling can be improved. At my worst in 2014 I was unable to walk the 100 yards to the post box to post my sick certificate to work and was housebound. At the time I was wondering how I would ever get back to work or play with my son again etc etc. I'm now walking 20 minutes a day and can hold down a full time job ( with a few adaptation). I still have PEM episodes but they are every 3-4 weeks as oppose to every day. If you have CFS there are ways to improve things (sleep management, pacing, heart rate monitoring, diet and supplements). Best wishes to you.
 

David Jackson

Senior Member
Messages
195
Fasinating, @Dainty, thanks for taking the time to write all that... I know those long posts can take some effort.

I know what you are referring to, as I've had some body work done in the past, but I learn some new things from yuor post as well.

Was it expensive to get all the osteopathic treatments?
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
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.
 

Dainty

Senior Member
Messages
1,751
Location
Seattle
Was it expensive to get all the osteopathic treatments?

It really depends on the practitioner. I actually knew of one in Portland who would treat all children absolutely free.

The first one I went to charged $300 for half hour sessions. I found her on the site I linked to. She over-treated me, then blamed the resulting issues on anxiety. Not a good one.

The next one I would have seen, when she heard my complex case, actually said flat-out she wasn't the right one to treat me.She referred me to my current practitioner, who charges a whopping $68 out of pocket for an hour long visit. He's internationally renowned in his field, but avoids putting his name out there because he's got too much business already, working without a secretary out of a run down office. Why? "So my patients can afford to see me."

He's even refused to take my money several times, because I was living on the streets and struggling financially.

I'm not sure how many others out there are quite as amazing as he is, but from what I've seen this field is far more likely to have people who genuinely care about the patient being able to access it.