My recovery story, in case anyone is interested

[Snowdrop]

I don't know what to think in terms of how he believes that statement makes sense or that it won't go unchallenged.
I suppose his real audience is the general public who he knows will not dig deeper.

 

[Snow Leopard]

IIRC, almost everyone has had EBV, so that on its own can't be a factor.

And some of us on this forum, such as myself have never had EBV...

Just to briefly mention, I became very ill from a vaccination (polio I believe) while in grade school, around 12-13. I wondered for months if I would ever get better. I finally did, but believe to this day this played a pivotal role in my later on developing ME/CFS.

If you are willing to share your story, did you suffer from (temporary) acute flaccid paralysis (eg severe muscle weakness) in a particular part of the body, typically the lower legs?

 

[MeSci]

Snowdrop, you see it like this:

physical --> psych

which I agree with except I would add another layer of depth:

physical --> psych
\\ //
\\ //
Mind

The problems and frustrations many patients have seem to stem from psychologists who see it like:

psych --> physical

It can be stated more concisely:

psychosomatic or somatopsychic.

I think that we need to use the latter word more frequently until people are familiar with the word and the phenomenon. See this post, which was the first time I came across it (thanks, @biophile!).

Here are a few definitions.

 

[MeSci]

And some of us on this forum, such as myself have never had EBV...

I haven't had obvious EBV either, but almost everyone has been infected with it, commonly without any symptoms, as described here, for example.

Have you been tested for EBV antibodies?

 

[Jenny TipsforME]

I see that pwme superficially appear dualist because of the passionate demand for biomedical research and strong opponence to CBT. If you scratch the surface though most of us have an unusually nuanced understanding because we live out a physical condition that is made worse by psychological stress. If we don't feel backed into a corner, we can be perfectly balanced on this issue! Perhaps we should be more public about this?

In terms of the thread as a whole I wanted to add a couple of points from my experience.

1) I've previously got to about 95% recovered. I wouldn't say full remission, but I could for example go to a festival, drink and then walk several miles home in the early hours without relapse. I add it here because I don't know how I got that good! I ate badly including wheat dairy and sugar. I didn't meditate or do anything specific psychology wise. I did general, relaxed pacing and that was it. Relapses seemed to be combination of virus and stress in terms of demands (not sad feeling emotional stress). I don't think I've had a setback or relapse without a virus being in the picture. I think previous recovery may be lucky based on long enough time between viruses and perhaps a POTS remission?
2) Bizarrely, given this experience, I am now the type that tries lots of things and hangs onto the 5% improvement. I agree that it is good to add in all of those 5% things together and try relaxing etc. This is probably a health psychology thing. I feel more positive trying something new rather than passively waiting. I have reduced gluten, added sugar, lactose and increased protein and salt. I take supplements and try to measure their effects. I do meditation like yoga nidra. I avoid situations that provoke an adrenaline rush. These things reduce symptoms. I am not cured.

 

[A.B.]

I don't know how I got that good! I ate badly including wheat dairy and sugar. I didn't meditate or do anything specific psychology wise. I did general, relaxed pacing and that was it.

Fluctuating symptoms are typical for autoimmune diseases and, I believe, some infectious diseases as well.

Fluctuating symptoms can easily give the false impression that some thing the patient is doing is making the symptoms better or worse. I believe that a significant portion of stories on how a patient improved or got cured are probably the result of the patient starting a treatment right before an upswing in symptoms.

 

[Jenny TipsforME]

. I believe that a significant portion of stories on how a patient improved or got cured are probably the result of the patient starting a treatment right before an upswing in symptoms.

@A.B. yes this is the point I was trying to make. However, I don't think it is the whole story. We do have some control over symptom severity. Not having a sense of that is a quick route to depression (horrible on top of ME). On an individual level this sense of control may matter more than the factual accuracy of what is really helpful. It is problematic when trying to help others though.

There are some things it might be worth everyone trying simply because lots of people claim they help and there isn't much danger eg cut out gluten, dairy, sucrose, eat more organic, rest, establish energy envelope, find something that helps keep regular body clock/sleep, identify/avoid stressors, learn relaxation techniques, do something fun.

A big caveat with this is that it is only worth it if these things increase your energy or relieve stress. If they take more energy than you save it is counterproductive, eg you feel slightly better gluten free but it costs more energy than that to cook from scratch. I think these work by taking demands off your body, allowing more energy to heal. Also useful advice I heard was if something is going to make a difference you can usually tell within a month.

It can be useful to attempt to measure if things help Quantified Self stylie. There's a Cambridge site with free cognitive tests for example. If we measured ourselves more routinely this has more weight than retrospectively guessing why we feel better.

 

[Snow Leopard]

Have you been tested for EBV antibodies?

Of course. Multiple times in different labs, as well as PCR.

 

[cmt12]

It can be stated more concisely:

psychosomatic or somatopsychic.

I think that we need to use the latter word more frequently until people are familiar with the word and the phenomenon. See this post, which was the first time I came across it (thanks, @biophile!).

Here are a few definitions.

Yes, somatopsychic by those definitions I would say is the default position of this forum, which I wouldn't consider dualist at all.

I'm wondering if people here are able to grasp this model (fixed):
physical --> psych
...........\\.....//
.............\\ //
.............Mind

You have to temporarily suspend how 'mind' is defined to be much more encompassing and inclusive, but this view can easily explain why no biomarkers have been found and explain the symptom -> remission -> relapse phenomenom.

 

[Sushi]

Yes, somatopsychic by those definitions I would say is the default position of this forum

The forum itself does not have positions--only individual members.

 

[Vic]

@james7a I've noticed my symptoms get worse when I play games. What kind of games did you play james? Console? Computer? RPGs? Shooters? Strategy?

 

[Wayne]

If you are willing to share your story, did you suffer from (temporary) acute flaccid paralysis (eg severe muscle weakness) in a particular part of the body, typically the lower legs?

Hi @Snow Leopard

I was in about the 6th grade at the time. It was the smallpox vaccine that did me in for what was at least several weeks, and may have been as long as several months. I recall the scab on my arm just would not heal, which at the time seemed like forever. It was very itchy and pussy, and very uncomfortable.

What was even worse was the virtually constant nausea and general weakness that accompanied it. During many of my worst ME/CFS years, I experienced the same kind of deep nausea and weakness--and oftentimes much worse--that was very similar to what I experienced all those years ago from that vaccination.

I think the whole vaccination belief system is flawed. They do increase antibodies to disease, which helps ward off future exposures, but that is only one aspect of the immune system--hence the need for followup vaccinations, or booster shots as I believe they're called.

Besides the immediate near-term "adverse" effects that are often noted, is there any longer-term damage or expense to the immune system from these vaccinations? I believe there is, but nobody really knows, because there have never been long-term studies done--I believe primarily because they don't want to know.

Way too little research and followup. Way too many cocksure attitudes in the industry. Way too quick to dismiss the connection between vaccinations and serious adverse effects, including major ME/CFS symptoms. Too much profit motive, and too little caring about the damage that's being inflicted on countless people. etc., etc., etc.​

 

[WoolPippi]

I was reading some of your initial posts on this thread.....
First of all, congratulations for getting to where you are now and healing! You are pure awesomesauce.

You seem to have a very balanced approach about disease and lifestyle. I like it!

Raw Veganism almost killed me, I was raised as a Vegan (half Indian here) and if that's the cure...then I should have been cured, right?....

James7a does not advocate a vegan diet as a cure for ME.

What he says is that at each meal he stood back and had a look at the food on his plate and asked himself whether this was a good thing to eat. His intuition/body answered and he went with it. That's how he came to his diet. Which fits him personally.

I do the same. Have food, stand back, ask if it's good for me. The answers I get are different from James7a. My intuition shudders at lentils, legumes or raw vegetables. So I stay away from those.

So it's more about accessing your intuition to learn about your personal bodily needs and preferences and trusting the inklings you get.

I'm guessing just about everyones intuition will tell them to stay away from deep fried stuff, milk, bread, sugar, soda, twinkies, KitKat, McD burger, chips, crisps and cookies. Even though I LOVE to eat them my inner voice tells me they're no good.

 

[Sam7777]

Can't help but think that the combination of very hot long baths and clay to mop up sweat well. . .think of what you could be sweating out.. any number of metals or pesticides.

 

[jacqui123]

Great story

 

[alex3619]

I'm wondering if people here are able to grasp this model (fixed):
physical --> psych
...........\\.....//
.............\\ //
.............Mind

I see it more like this:

physical --> psych/beliefs
...........v.....v^
.............v ..v ^
.............Perception of illness.

All a lot of the therapies based on mind-body work can be reliably shown to do is change perception. That can make a big difference to quality of life. Its not clear it makes a big difference to disease process.

Any discussion of mind is on rocky ground. Mind is right up there with magic, spirits, demons, souls and other unproven things. It might exist, but there is no substantive reason we have to believe it actually does exist. What we call mind, what we describe as mind, is better thought of as either brain function, a perception of brain function, or an output of brain function. Mind is a cultural fiction. We need to get it out of any serious discussion of disease.

There are consistent biochemical abnormalities in ME patients and strictly defined CFS patients, and subsets. Its just that while we can measure the physiology, we do not yet know the ultimate causation. The same can be said for many other diseases, including MS and type 2 diabetes. Mental models, and appeals to mental models, come close to invoking magic to explain the physical things. There are no known mental mechanisms for any of the physical things seen in ME. A very small percentage has possible brain mechanisms though, and many or most of the secondary symptoms might be explained by brain dysfunction. When we invoke mind we invoke hypotheses that are currently untestable, and so are not currently scientific.

If we want to invoke mind, why can't we invoke spirits, curses, spells, magic, demons, or aliens? They are all unproven things, and any of them could cause things to happen if they were real.

What we call consciousness is in many respects the brain observing its own functioning.

I do think diet has an impact on ME and CFS for most of us, but I am not even close to being convinced that one single diet is optimal for all of us. For a start, I think all of us would be a heterogeneous group, with many different mechanisms and complications. Its about individual diet, not the single perfect diet. Higher protein lower carb diets seem to be more consistently cited as helping.

I regularly play computer games. They help, not hinder. What I do not do is play fast paced demanding games that induce adrenaline surges and demand intense concentration. Those are a problem. So the type of game is critical. Even so, gaming like most other things has to be paced.

 

[Sam7777]

This still makes sense though.. .as I think about it there's a bit to it. . looking at how people sleep, how the nervous system is responding to things.

I know artificial light is really bad after dark, but its more than that I think with people their nervous systems can become a bit broke from some sort of critical point of just ya know hyper stimulation. In my case that's what happened to me exactly, like I literally burnt out, and then I got slammed with a redistribution accident with alpha lipoic acid 4 years ago right as I was in the process of burning out and throwing literally every legal stimulant I could get my hands on at my body while staying up for days at a time. Four years of quasi chronic fatigue and just sorta zombification sorta underlines the point that I think maybe the nervous system gets stuck in the wrong gear.

It's peculiar because I've spent so much of the last 2 years, especially the last year listening to so many of these podcasts where people were interviewed about sleep science and brain science related to sleep, meditation, traumatic brain injuries, and even yoga.

Like in my case, I am addicted like hell to caffeine. I probably drink on average at least 500 mg of caffeine like its nothing everyday.

To add to that, I remember that there was a previous point in my life about 7 years ago where I did recover once from most of my symptoms as well as losing a tremendous amount of weight primarily through a very strict fasting diet, mostly weston a price stuff but mostly fish, and (in hindsight it was a very low thiol diet because no dairy/no legume etc) . . .the perfect mercury diet in a lot of ways. . . .aaaand I drank absolutely no caffeine during that time....didn't seem to have a need for it. I blame college for me turning into a neurotic lunatic in that regard, it really broke me down ruined all my progress and got me into the caffeine badly.

I have taken a really good supplement most of the last I'd say 2.5 years called relora theanine serine, primarily to calm the brain down. It use to be stronger, I remember the initial effect of it 2 years ago, particularly, it would produce basically a full body zen state, a very trance meditative almost minty cold crisp feeling in the nervous system, . . unfortunately I don't get that anymore.

 

[james7a]

I just thought I would update everyone on my situation.
Firstly I made a website www.recoverfromchronicfatigue.com - I just put everything down in a written down encase people can not watch videos. Someone notified me that it will not show up in google because I made the website with pictures instead of html.. pretty annoying!
secondly I'm still feeling great, lost 8kg ~ in the past 3 months, did my first 60k bike ride 2 days ago and I'm working towards a career as a dietitian. I have to retake my GCSE maths first though which is a pain, but I feel as though I can deal with anything that comes my way when I compare it to the years I spent in my house chronically ill.
hope the best for all of you in 2016

 

[SwanRonson]

No offense at all - I'm sure you're an honest guy. But, the whole internet health consultation business is so shady. Every random dude seems to be offering Skype calls for $90/hour to tell you which supplements to buy. I guess there's a lot of money to be made there, but it still seems kind of icky. I don't know how someone could possibly diagnose somebody without a long-term, in-person relationship with them.

I've been taken in by a couple of them. No more.

 

[sregan]

I just thought I would update everyone on my situation.
Firstly I made a website www.recoverfromchronicfatigue.com - I just put everything down in a written down encase people can not watch videos. Someone notified me that it will not show up in google because I made the website with pictures instead of html.. pretty annoying!

On my macbook (not tried on a mobile device) using FF and Chrome the site is wider than my screen and I have to scroll left and right to read. Using text instead of images and proper stylesheet will fix this and solve your google issue. You can buy very professional website templates for a paltry $10-$20 @ http://themeforest.net/