Involvement of Cervical Muscle Lesions and Autonomic Nervous System in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

[sb4]

Abstract
Background: Patients with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) sometimes coincide with stiffness of cervical muscles. This study examined the effect of local modulation of the cervical muscles on ME/CFS and the underlying mechanism.
Methods: In total, 1,226 inpatients with ME/CFS who were resistant to outpatient care were enrolled in this study for 11 years. All patients underwent daily physical therapies to the cervical muscles during hospitalization. Self-rated records documenting the presence and absence of ME/CFS and the representative eight disorders that frequently accompany it at admission and discharge were compared. The pupil diameter was also measured to examine involvement of autonomic nervous system function.
Results: The recovery rate of ME/CFS after local therapy was 55.5%, and did not differ significantly by sex, age strata, and hospitalization period. The recovery rates of the eight disorders were variable (36.6－86.9%); however, those of ME/CFS in the disorder subpopulations were similar (52.3－55.8%). The recovery rates of all disorders showed strong associations with that of ME/CFS (p<0.001). The pupil diameter was decreased at discharge, and the change was significantly higher in the ME/CFS-recovered patients than ME/CFS-unrecovered patients in the total population and the subpopulations stratified by sex, age, and hospitalization period.
Conclusions: Local therapy to the cervical muscles led to recovery in more than half of patients with ME/CFS, at least partly through amelioration of the autonomic nervous system. There may be a causal relationship between recoveries of ME/CFS and these related whole-body disorders.

Saw this study posted over on S4ME. It claims over 50% recovery from cervical therapy involving electrical stimulation and IR light.
Seems excessively high level of recovery, it seems recovery is based on autonomic symptoms and not PEM. Still very interesting to me.

"Notably, the patients enrolled in this study had already completed conventional outpatient care including resting at home for 12-91 days (mean, 49.3 days) before the hospitalization and were resistant to that care. Therefore, it seems improbable that more than half of the patients with ME/CFS would recover via resting alone, even during hospitalization. "
Does this mean, the patients in this study have had CFS for only a couple weeks? or that they had separate care that involved resting for a couple of weeks? If the former then the 50% could be people randomly getting over a short term illness.
Don't know though as I have only skimmed the paper.

@Hip @pattismith

 

[Hip]

Wow, 56% ME/CFS recovery rate is a pretty spectacular result — if the study is to be believed. They had no control group, so very hard to interpret this recovery rate figure.

Does this mean, the patients in this study have had CFS for only a couple weeks? or that they had separate care that involved resting for a couple of weeks? If the former then the 50% could be people randomly getting over a short term illness.

The paper is not very clear on how long the patients had ME/CFS. If they only had ME/CFS symptoms for a short time of a few months, they could be just post-viral fatigue patients, who tend to recover on their own anyway.


Some quotes from the study:

Among patients who visited our institutions between May 2006 and May 2017 and were diagnosed with ME/CFS according to Fukuda’s denition, we enrolled 1,363 patients who were resistant to outpatient care and required hospitalization.
...
Patients who were hospitalized for 5-120 days were enrolled.

So it sounds like the ME/CFS patients were fairly severe, if they required hospitalization. Unless that is, they hospitalize anyone with refractory fatigue in Japan as a matter of course.

As an underlying mechanism, we propose amelioration of the autonomic nervous system that passes through the cervical muscles

So they are suggesting that neck and shoulder muscle stiffness could be causing or contributing to ME/CFS. And thus this is why they are using electric current therapy devices and far infrared heat to relax these tense neck muscles.

For the treatment of the indenite symptoms, we have tried local modulation of the cervical stiffness. Among physical therapies, low-frequency electrical stimulation and far-infrared irradiation are reportedly effective at recovering muscle stiffness of the neck and shoulders.

Well my neck and shoulder muscles are certainly tense, so I might try this therapy on my muscles.



Here they detail the low-frequency electrical stimulation therapy in more detail:

All patients underwent low-frequency electrical stimulation and far-infrared irradiation applied to the cervical muscles for 15 minutes two or three times daily throughout the hospitalization period. No other treatments including medication, injection, external xation, or cervical traction were performed.

The study says they employed a combination of two low-frequency electrical stimulation procedures: the Silver Spike Point from Nihon Medix, and the Pain Topra LCF-30 from Celcom (which looks similar to this product).

I cannot find much information about exactly what type of low-frequency electrical stimulation these two products deliver, but looking at their specifications, the current they deliver goes up to around 50 mA.



In terms of trying to replicate the electrical stimulation to relax neck and shoulder muscles, I believe TENS machines (transcutaneous electrical nerve stimulation), microcurrent therapy and EMS machines (electrical muscle stimulation) can all help relax tense and stiff muscles.

Which one of these three machines is best, I am not sure at the moment.

 

[junkcrap50]

Link to paper: https://www.researchsquare.com/article/rs-100155/v1

 

[Treeman]

How long did the therapy last? I week, 1 month, 6 months?

 

[Hip]

How long did the therapy last? I week, 1 month, 6 months?

They said the therapy was performed two or three times daily for an average of 63 days (just over 2 months).

 

[WantedAlive]

@sb4 Great find! Hard not to be skeptical, but that's not an insignificant number of patients assuming they were appropriately selected. I'm trying to imagine what this might be 'correcting' in those patients who recovered, might it be stimulating blood flow in the brainstem? The neck and shoulders is also the primary location of brown adipose tissue (BAT) and thermogenic response and BAT activation has to be implicated in ME/CFS, I've often wondered if this is contributing to the neck issues in ME/CFS. Anyone got any suggestions how this might be working?

I have to find one of those machines. I wonder if electro-acupuncture could work the same? I've used EA and know where to get it, but instead I was trying to stimulate the vagus nerve.

 

[Treeman]

I have a tens machine and an infra red lamp. I started using both yesterday and have to say that the tens machine provided some noticeable relief from brain fog. I shall continue.

 

[Hip]

I have a tens machine and an infra red lamp. I started using both yesterday and have to say that the tens machine provided some noticeable relief from brain fog. I shall continue.

Interesting. Where precisely are you placing the two TENS electrodes? Is it on the back of your neck, say from nape to going down to the spine? Or the side of the neck, going down to the shoulder?

In my case, the muscles seem tense and stiff on the two sides of the neck, as well as on the left and right shoulder areas.

 

[Treeman]

In my case, the muscles seem tense and stiff on the two sides of the neck, as well as on the left and right shoulder areas.

The muscles do appear to be tight on me all the time down the neck and shoulders too.

Where precisely are you placing the two TENS electrodes? Is it on the back of your neck, say from nape to going down to the spine? Or the side of the neck, going down to the shoulder?

I have a tens machine with 4 electrodes. I placed two either side of the nape under the hair line. The other two further down across the shoulders either side and close to the spine, although I think I will need to play with this positioning as I don't think that was the optimum one.

 

[MonkeyMan]

Hi, this is very interesting to me because I have a lot of neck stiffness (but no pain). I've also had a lot of insomnia and frequently have a feeling of swelling/pressure in my head. At the risk of asking some stupid questions, I'm wondering about the following:

• What should I do? Buy a TENS machine from Amazon and see if it helps? Talk to my GP? Ask for a cervical MRI?
• Is cervical muscle stiffness in any way related to the cervical instability (CCI) / tethered cord / stenosis that Jennifer Brea and others have been diagnosed with? Is it worth buying a "cervical traction device" to see if that helps?

Thanks in advance for any thoughts!

 

[pattismith]

@Hip @sb4 (thank you for tagging me on this)

here the thread I opened about my improvement with TENS in the back neck.

I also notice improvements with the jump technique which I believe works on the neck issue.

I also noticed benefits with the relaxation technique of the neck (head down between legs).

And here some threads about research connecting neck loss of lordosis / neck spondylosis / cervical instability / autonomic disturbance and cerebral blood flow impairement...

 

[Treeman]

What should I do? Buy a TENS machine from Amazon and see if it helps? Talk to my GP? Ask for a cervical MRI?

I bought a tens machine for about 20 quid it was worth the gamble. I've had a number of MRI's on my head, they always say "No problems"!

 

[sb4]

For what it's worth I have been working on my posture for a year or 2. I have managed to reduce lower back pain and neck pain I would get it the evenings significantly but not noticed much on my other symptoms.

I think esther Gokhales work on primal posture is legit. Doing this (stack sitting for example) combined with mike mews tongue posture allows you to sit up straight comfortably with your neck in a very elongated natural position.

The only problem is, I and most people find it difficult to hold the tongue posture. This is from having bad posture (like the vast majority) in childhood causing the maxilla to be smaller than it should, meaning the tongue doesn't fit on the roof of the mouth as it should, which then causes it to rest at the bottom of the mouth; this causes the head to rotate forward and mouth breathing.

Anyway, I realize I'm going a bit off track here but I would definitely recommend people with lower back and neck issues to try Esther Gokhales stack sitting combined with Mike Mews tongue posture (and chin tuck). These combined make sitting comfortable and feels like very natural posture. Also the cervical spine is in a natural stretch like this, instead of being scruntched up all the time with forward head posture.

Heres a little picture I made as a wallpaper on my computer to remind me of good posture.

I have uploaded this picture before but look at this woman who is standing in a natural primal posture. Her cervical spine is very elongated. I think this is the natural position for your neck. It's like your neck is constantly recieving traction especially when walking.

Anyway, I'll stop derailing my own thread now.

 

[Pyrrhus]

I have uploaded this picture before but look at this woman who is standing in a natural primal posture.

I would guess that the most ergonomic way to carry heavy objects is on your head, so that the weight of the heavy object is supported by your spine, not your muscles. When it is the custom in your society to balance heavy objects on your head to carry them for very long distances, it is very hard work indeed, but you end up with perfect posture at least!

 

[JenB]

Is cervical muscle stiffness in any way related to the cervical instability (CCI) / tethered cord / stenosis that Jennifer Brea and others have been diagnosed with? Is it worth buying a "cervical traction device" to see if that helps?

Potentially. People with unstable joints due to connective tissue laxity often “guard” those joints via muscle stiffness/rigidity. However, it does not necessarily follow that relaxing the muscles can make you feel better. Often times, they are spasming for a reason. However, if they spasm inappropriately, calming them down can be helpful. It’s complicated...

As for the paper, it’s hard to know what to make of it. There is no control group and the outcome measures are not well-explained/justified. Some explanation of PEM, a walking test, or CPET would have been nice. I find it implausible that simply relaxing the cervical muscles can resolve ME...

I can think of plausible reasons this might be helpful for patients in their first year, but if these are new patients, they may well be people who would have improved anyway, especially under conditions of rest/limited activity, which you might do in a hospital but not in normal life. But again, we don’t know how long they were sick.

 

[JenB]

I would guess that the most ergonomic way to carry heavy objects is on your head, so that the weight of the heavy object is supported by your spine, not your muscles. When it is the custom in your society to balance heavy objects on your head to carry them for very long distances, it is very hard work indeed, but you end up with perfect posture at least!

I’ve actually starting doing this, inspired by the time I lived/traveled across Africa. I have a 6 pound slam ball that is too light to really be used as a slam ball. I balance it on my head (holding it with one hand) and practice walking around, picking up/carrying things. It elongates my entire spine and feels amazing.

*Note if you have cranial settling, even with the support of one or both hands, this could really exacerbate symptoms. I do not recommend it without clearance from a doctor or PT!

I’ve been meaning for sometime to read Esther Gokhale’s book. Thank you @sb4 for the nudge.

 

[bensmith]

Her posture is amazing. If i wasnt sick i wanted to try sleeping on the floor like in japan. With eds(likely) who knows though.

 

[WantedAlive]

I have a tens machine with 4 electrodes. I placed two either side of the nape under the hair line. The other two further down across the shoulders either side and close to the spine

I just landed my TENS machine today, so keen to experiment and learn from your experience. I got a 4 electrode machine also, are you positioning the electrodes so they pulse across the spine or parallel to the spine? I'm interested to see if this makes a difference. I'm wondering if it could be stimulating blood flow in the spine and neck or if its just muscular. The function of TENS is nerve stimulation so I guess it could be possible to improve circulation in the spinal region.

I agree with @JenB that just relaxing the muscle won't resolve ME. I got ME when I was 52, never had neck problems in my life, until 4 years into my affliction with ME which I tried to resolve with chiro manipulation. The first manipulation at C5-C7 gave me a massive and progressive improvement over 3 days, my legs began to function much better. The second manipulation at C2 three days later really knocked me back, and within a fortnight I had deteriorated to needing a wheelchair. It also seemed to trigger an immune response. I haven't improved since. An MRI revealed nothing abnormal.

So from my experience I'm convinced half my debility comes from the brainstem and signal impedance to the muscle. That's why I'm thoroughly interested to try this TENS out, its a cheap and easy experiment. I've also got an FIR Infared neck warmer arriving and see if there's any validity to this research paper.

 

[Treeman]

are you positioning the electrodes so they pulse across the spine or parallel to the spine?

The pulses radiate out from the position in all directions, so they do both I would say. I also use an infra red light and my sleep and health appear to be improving.

 

[WantedAlive]

@Treeman My understanding is there is a flow of current between electrode pairs that creates the pulse waves, so with two pairs of electrodes you can bracket a target area. My first trial I had current flow across my spine, tomorrow I want to try current flow parallel to the spine. There may be no noticeable difference but for circulatory function I think it’s worth trying.