Cause & Cure

[Victor Maalouf]

I just finished a paper and a few video presentations on the "cause and cure" to the syndromes and symptoms labeled as CFS/ME, Fibromyalgia, chronic Lyme, Gulf War Syndrome, and many cases of Autism Spectrum. I'm being purposefully brazen with the title. My work is based on 2 and a half years of my experience, others' experience, and research, and I'm as confident as I can be that it's true, but you all, some of the harshest critics, no doubt, will be the judge of that.

I suppose I should preface this by saying I was able to recover from one of the most severe cases of CFS/ME/FM you can get: CFS/ME + Fibromyalgia + 5 separate connective tissue tears, MCS, IBS, brain fog, photo sensitivity (general intensification of all experience), bed-ridden 2/3 of the day and getting worse, difficulty walking w/o a crutch, difficulty speaking, extreme nausea and PEM, poor coordination, sleep difficulty, unrefreshing sleep, anxiety/panic attacks, depression, TMJ disorder (cracking in left jaw and bottom teeth newly pushing into top row), and more.

Cort's website has been very helpful to me, particularly when I began learning about these syndromes. PhoenixRising members sharing their experience were very eye-opening.

I know we are the biggest critics of any treatments or theories as to how it all works, so I wanted to share my ideas and observations with you first.

Intro:

150+ case observations:

How they work:

Causes:

Update: Just published the paper on my experience, explanation of how the symptoms work, causes, and other theory here:

https://docs.google.com/document/d/1724m3mmhgHGrhMiiXD7ev1zVJNVGEbmiji_sVsKAyVc/pub

Thanks for your interest!

 

[Folk]

Most people here won't be able to watch a 4 hour long video.
Would you care giving a preview, a simple summary of what you believe is the cause, and the cure?

Thanks

 

[Victor Maalouf]

Most people here won't be able to watch a 4 hour long video.
Would you care giving a preview, a simple summary of what you believe is the cause, and the cure?

Thanks

The first Intro video gives a very short explanation.

Basically, there are common patterns of musculoskeletal dysfunction in everyone with this wide spectrum of pain, fatigue, cognitive dysfunction, and other common co-symptoms (comorbidities) like IBS, MCS, sensory gating issues, headaches, sleep difficulty, imbalanced gait, etc.

There is one main pattern that almost everyone appears to have some variation of. In my largest presentation I characterize it as a shoulder girdle imbalance/collapse/dislocation. One shoulder "collapses" forward while the other is "jammed" backwards. As an analogy, they become like wringing out a towel or ripping apart a piece of paper, radiating compression and tension forces up and down the body. This compression can affect nerves, organs, circulation, breathing, intracranial pressure, etc, and the tension can cause connective tissue tears, even muscle tears that worsen the twisting throughout the body. These sites of compression and tearing are the various places symptoms can be produced, a range of many possibilities, all contributing to the total package of these syndromes.

The shoulder that is jammed or retracted backwards is frequently the site of an injury (like an AC tear) or restricted range of motion, like frozen shoulder. The side of the body on the forward collapsed shoulder frequently grows incredibly dense with muscle tension and scar tissue. Many with CFS/ME can often feel one side of their ribcage is painful to touch, restricted even.

The mechanism behind the on/off and traveling features of many of these syndromes is the instability of this mechanical warping. The body constantly struggles to remain stable, but shifts in and out of configurations due to the "dislocation" across the shoulder girdle and injuries and how muscle tension dissipates and jumps from location to location. In the case of CFS, this tension can contribute to "locking" the upper torso, keeping the person stuck in a compromised state.

Some people may have hip and/or low back pain, almost always on the same side of the "jammed/retracted" shoulder, opposite to the forward collapse. This pain/weakness can lead to an asymmetrical gait. Of course, not everyone is the same, but the features of the main pattern are surprisingly consistent across individuals.

There are other signs, indications, and specific mechanics that I go over in my videos and paper. These are mechanical, musculoskeletal problems at their root. Correcting these mechanics, general asymmetry, and stabilizing the body, primarily in the shoulders, is how you in effect, cure these symptoms.

In the 4+ hour long compilation I've put together, there are some examples where people improved drastically with certain kinds of physical therapy. My main goal with that video is to make it so that ANYONE can clearly SEE these patterns in each person, and themselves if they have one of these syndromes.

**It is not just the shoulders that are involved, but from what I've observed, they are the prime indicators/drivers of this particular pattern in people with these syndromes. The dysfunction potentially travels throughout the body, "twisting" the core, neck, head, hips, even feet.**

**Also, restricted range of motion or pain in the shoulder is a transient issue, and not always present. Some people are not even aware of an issue until many years into their illness progression or recovery. The specific mechanics require more specific attention/explanation.**

 

[Who Me?]

Most people here won't be able to watch a 4 hour long video.
Would you care giving a preview, a simple summary of what you believe is the cause, and the cure?

Thanks

I won't last 5 minutes of this.

@Victor Maalouf what exactly is your experience /background? Were you just looking into things for a few years after you got sick and developed your own theory? Is there data to back this up?

Are you saying that all of this stems from physical and joint issues? My oversimplication because it'll take me awhile to absorb this.

 

[Veet]

I've had frozen shoulders on both sides. The first preceded my ME collapse by 2 years, although I'd already entered the zone of 'chronically fatigued'. The 2nd came 7 years into ME. I had 20 myofascial sessions, very thorough, not only around shoulder. Eventually I got significant relief. The remaining restrictions released over time, in response to eliminating gluten, then an intensive period of detox. My shoulders are essentially normal now. However, the fundamental condition of ME has not shifted. Diet, detox, supplements have relieved almost all of my noxious symptoms, yet cognitive and physical fatigue and POTS remain disabling.

 

[Cort]

I don't know about frozen shoulders but I certainly believe a "frozen" kind of musculature in the upper body is present. I remember trying neck stretches that laid me out....I got fluey symptoms, fatigue galore.

It feels to me that everything from about my sternum up is in lock down mode.

 

[San Diego]

I started this whole thing with a frozen shoulder, too. While no one seems to know what causes that, it is definitely a sign of inflammation gone bad.

My DO who does body work on me says my thoracic area is one of the worst she’s seen - totally out of whack. That and my neck which is where my pain originates. Who knows. Every little piece of the puzzle can help!

I watched part of the videos. He seems to think we all have imbalances left vs right in the shoulders/clavicles. He may be right, but I wonder about controls - maybe everyone has imbalances now because we’re all on electronic devices all day?

 

[Folk]

I always start my story with bursitis on both shoulder....

Although I had GI symptoms prior to this.

 

[Who Me?]

I started this whole thing with a frozen shoulder, too. While no one seems to know what causes that, it is definitely a sign of inflammation gone bad.

My DO who does body work on me says my thoracic area is one of the worst she’s seen - totally out of whack. That and my neck which is where my pain originates. Who knows. Every little piece of the puzzle can help!

I watched part of the videos. He seems to think we all have imbalances left vs right in the shoulders/clavicles. He may be right, but I wonder about controls - maybe everyone has imbalances now because we’re all on electronic devices all day?

There was a guy on PR a year or so ago, I can't remember his name,but his avatar was a back with scoliosis or something and I think he talked about this too. I can't remember his name. Anyone remember him? I just cant see this as being the whole picture when so many other things going on.

 

[Upgrayedd]

Yeah, I'm having a hard time accepting that we've got so many dysfunctional systems and symptoms (e.g., immune, nervous, intestinal, digestive, cognitive, etc. etc. etc.) but the cause is some orthopedic imbalance. Sounds like a sales pitch from a chiropractor.

I love getting my back cracked as much as the next guy, but you can get an 'adjustment' 6 days a week - it isn't getting rid of your 10 years of CFS/ME/Fibro.

 

[Who Me?]

- it isn't getting rid of your 10 years of CFS/ME/Fibro.

Make that 20 yrs

 

[Victor Maalouf]

Just published the paper here: https://docs.google.com/document/d/1724m3mmhgHGrhMiiXD7ev1zVJNVGEbmiji_sVsKAyVc/pub

I'm going to have to find a better medium. Make a website, as Gdocs doesn't use page numbers apparently. Wonder if I can create hyperlinks for the table of contents...

@Victor Maalouf what exactly is your experience /background? Were you just looking into things for a few years after you got sick and developed your own theory? Is there data to back this up?

Are you saying that all of this stems from physical and joint issues? My oversimplication because it'll take me awhile to absorb this.

My paper draws from over 150 sources, at least 85% from studies and doctors/researchers. Researched over the last 2 years.
Yes, it all stems from a large-scale dislocation of the upper thoracic cage, bracketed by the shoulders.

1998 study where researchers observed asymmetrical characteristics in home video of all of 17 different children with ASD.
http://invibe.net/biblio_database_dyva/woda/data/att/a1b7.file.pdf

I've had frozen shoulders on both sides. The first preceded my ME collapse by 2 years, although I'd already entered the zone of 'chronically fatigued'. The 2nd came 7 years into ME. I had 20 myofascial sessions, very thorough, not only around shoulder. Eventually I got significant relief. The remaining restrictions released over time, in response to eliminating gluten, then an intensive period of detox. My shoulders are essentially normal now. However, the fundamental condition of ME has not shifted. Diet, detox, supplements have relieved almost all of my noxious symptoms, yet cognitive and physical fatigue and POTS remain disabling.

In my experience, as the fatigue improves and the core stabilizes, there are periods where one shoulder becomes more "frozen" or restricted. There will be uniqueness to each person's cases, and the stages can vary, but what feels like normal shoulders may not actually be normal. Until the shoulders are expanded enough and can be properly re-suspended by the torso without twisting it, only when you approach that will fatigue and fog symptoms cease to dip.

I don't know about frozen shoulders but I certainly believe a "frozen" kind of musculature in the upper body is present. I remember trying neck stretches that laid me out....I got fluey symptoms, fatigue galore.

That experience hints at why research on this illness has gone almost nowhere. There is a large misconception that CFS/ME is "triggered" by a "flu-like illness," assumed to be caused by an infection. The reality is that they are caused by rough musculoskeletal shifts when tissue and bone grind against each other between the transitioning phases in and out of these "collapses." I went through many fluey periods, always after making large amounts of progress. I talk about them more in the paper and "How they work" video.

Yeah, I'm having a hard time accepting that we've got so many dysfunctional systems and symptoms (e.g., immune, nervous, intestinal, digestive, cognitive, etc. etc. etc.) but the cause is some orthopedic imbalance. Sounds like a sales pitch from a chiropractor.

I love getting my back cracked as much as the next guy, but you can get an 'adjustment' 6 days a week - it isn't getting rid of your 10 years of CFS/ME/Fibro.

I'm well aware this concept is difficult to believe for everyone. It's the reason I put together the compilation, in the hope that people could see it for themselves, and not have to just take my or anyone else's word for it.

All of the vital systems are bracketed within the upper torso: respiration, heart, major arteries/veins, lymphatic system (thoracic duct) (into and out of the brain), thoracic spine/cord, vagus nerve, intestinal track not too far down, muscle tension traveling up the neck and around the skull.

Yes, admittedly I do want to see if I can help people physically. I've become terribly boringly familiar with the patterns; how they work, the various stages, how they change and move.

I'm not a fan of standard chiropractic, though it depends on the provider and how skillful/experience they are. I don't like back-cracking, personally. I think chiros are too reliant on it and the spine in general. CFS/ME isn't something you can simply adjust.

 

[bobby]

I'm not a fan of standard chiropractic

what did you do to fix the dislocation of your upper thoracic cage?

 

[GracieJ]

Are you looking at "normal" people for these patterns?

I have worked on hundreds, if not thousands, of people with massage therapy. Thoracic anomalies and shoulder imbalance are common across all walks of life, yet not everyone has one of these illnesses.

I will be reading/viewing your information in depth. This is an intriguing idea.

Are you completely recovered? No MCS, POTS/OI, PEM, mitochondrial issues, MCAS, abnormal heart rhythms, muscle and joint pain, leaky gut and digestion issues, candida, headaches, eye problems, energy deficit, sleep disorders, seasonal and temperature issues, adrenal anomalies, need to pace, etc.?

I believe the musculoskeletal shifting you are describing could most certainly be a driving piece of keeping the body in a vicious cycle, but I do not buy it as THE answer to autoimmune disease. Too many unaccounted pieces.

 

[GracieJ]

Imbalances in the shoulders and thoracic area will be preceded by issues in core stabilizers. Those issues come from relative immobility, the relationships between the extremities, the core, and proper body mechanics. There will be issues with gait and hip flexors before the upper body has issues.

I think we are "off" more than the rest of the population because of the muscle anomalies in the tissue itself.

17 years of focused therapy later, addressing the structural anomalies mentioned, I should be well then. It's a great tool for pain and dysfunction. Not a cure yet.

Cause - I do not agree. Cure - no. Great tool for alleviating/mitigating symptoms? I'm with you on that one.

 

[Paw]

One of my several oddball symptoms (which docs describe as "interesting") is a grinding in my neck. If my head were a big ball bearing, it would be as though the "socket" of the neck was lined with grit, sand, and pebbles. Gentle rotation of the head, side to side, has been producing grinding noise and feelings from ear to ear (around the back of the neck) for, oh, at least 25 years.

I have no idea if this is common, but when I've asked people to listen to my neck up close they can hear it too. (I also have TMJ, and can hear/feel grittiness and clicks by opening my mouth wide, but that's in the jaw.)

I used to do a lot of aggressive yoga in my young adult years -- and neck cracking, back cracking, etc. Maybe that has something to do with it.

Anyone else have this sort of thing? I've always wondered if it might be connected to my current state. Now I'm wondering if it could be connected to the muscular skeletal dysfunction described here. I do get shoulder pain/cramps, but not "frozen" shoulders.

 

[Veet]

There is a large misconception that CFS/ME is "triggered" by a "flu-like illness," assumed to be caused by an infection. The reality is that they are caused by rough musculoskeletal shifts when tissue and bone grind against each other between the transitioning phases in and out of these "collapses."

Please do not assume you are the person who has finally gotten the answer to ME.

 

[Who Me?]

Please do not assume you are the person who has finally gotten the answer to ME.

Well @Veet of course he does. We can just tell Drs. Montoya, Kaufman, Klimas, Chia, Enlander, Peterson, Cheney, Levine, Mikovits they can retire now because @Victor Maalouf has finally solved the problem!

Please show backup for your assertions about this "misconception" that MECFS is triggered by a virus and prove "your reality" that it is musculoskeletal besides you just saying it.

 

[Folk]

@Victor Maalouf I don't know if you answer this in your videos but 2 questions about your theory.
First: Why so many people have a onset after Mono and second why some people get better with anti-viral?

 

[Paw]

Please do not assume you are the person who has finally gotten the answer to ME.

Ha, that seems to be a fairly common symptom!