Rapid recovery from all symptoms of severe ME/CFS by treating proprioception dysfunction syndrome: A case study, 2018(?), Da Silva et al.

[Chandelier]

PDF

Authors: Orlando Alves da Silva, Susan Byrne, Alastair Craw, and Margarida Dolan


ABSTRACT.

Background.
Fatigue with no apparent organic cause is one of the characterising symptoms of ME/CFS, and fatigue is one of many possible symptoms of Proprioception Dysfunction Syndrome (PDS).
The aim of this study was to investigate whether a patient with ME/CFS also had PDS, and to treat the patient following the non-invasive and inexpensive protocol for PDS from [13].

Methods.
A patient with severe ME/CFS was diagnosed with PDS using simple biomechanical tests that investigate body and visual-spatial perception.
The key elements of the treatment involve the use of glasses with ‘Active Prism’ lenses, combined with postural reprogramming.
We subsequently followed four further patients with the characterising symptoms of ME/CFS through diagnosis and treatment for PDS.

Results.
The results show a rapid recovery of the clinical state of the primary patient during the course of the treatment as measured on the Bell Fatigue Scale, allowing him to return quickly to professional life and to re-establish his pre-disease quality of life.
Of the four additional patients, one regained pre-disease levels of function, while the clinical state of the remaining three patients improved measurably.

Conclusions.
Research into the prevalence of PDS among ME/CFS patients should be carried out, and those ME/CFS patients with PDS should undertake the treatment that we describe (begining with postural reprogramming, see Appendix B).

 

[Chandelier]

I came across a „how to recover“ website by a pwME: https://people.bath.ac.uk/ac886/cfs/

At the end they write the following and link to the case study above:

I thought that I'd made a full recovery after implementing all of the strategies described above. However, I had a bad relapse after catching a virus in May 2017 that put me in a wheelchair or in bed for the better part of a year. In April 2018, I was finally diagnosed with a physiological condition called Proprioception Dysfunction Syndrome (PDS).

From the case study:

The symptom of PDS that is most relevant to the present paper is fatigue. When an individual has a proprioceptive dysfunction, the brain perceives incorrectly the tonus of muscle fibres throughout the body and, as a result, many muscle fibres may become and remain hypertonic even at rest. In particular, hypertonicity in both muscles of an antagonistic muscle pair may result in no movement, but would nevertheless require an ongoing supply of energy. One potential consequence of this is profound, long-lasting fatigue that is not substantially alleviated by rest, because rest alone may not correct the perception of the tonus of muscular fibres throughout the body nor the resulting hypertonicity. The clinical experience of the first author shows that when the dysfunction of the proprioceptive system can be addressed, the brain starts to perceive correctly the tonicity of the muscle fibres, and the brain sends a new signal for the hypertonic muscle fibres to relax. As a result, the unexplained fatigue may disappear.

2.1. Performing the diagnosis. To diagnose a patient with PDS, the clinician initially carries out two simple tests 1 as follows:

(1) Head extension. The patient is asked to stand upright (unless the patient cannot stand) and, while keeping their shoulders still, is asked to tilt their head backwards to look up to the ceiling. The indicator for PDS is to observe whether the neck extension muscles (including the trapezius and intervertebral muscles of the posterior chain) on both sides present similar levels of contraction while maintaining full neck extension. This can be recognised 2 by measuring the distance between the shoulder and the ear lobe on a vertical line. The clinician places their palms flat along either side of the patient’s neck with the first articulation of the little finger of each hand touching the top horizontal edge of the trapezius muscle. The distance from the clinician’s thumbs to each earlobe is observed and provides the information on the symmetry of the head in full extension.

(2) Head rotation. The patient stands upright (unless the patient cannot stand) and, while keeping their shoulders still, turns their head slowly to one side as far as possible, then slowly turns the head around to the other side as far as possible. The clinician assesses whether the patient presents with right-left asymmetry in the amplitude of head rotation; such an asymmetry is one of the signs of PDS. This test highlights the relative tonic state of the extensor muscles of the head on each side of the body.

 

[Trish]

Bell Fatigue Scale
https://cde.nlm.nih.gov/deView?tinyId=QJbSliKT6I

100	No fatigue symptoms at rest, no symptoms with exercise, normal overall activity level, able to work full-time without difficulty
90	No symptoms at rest, mild symptoms with activity, normal overall activity level, able to work full-time without difficulty
80	Mild symptoms at rest, symptoms worsened by exertion, minimal activity restriction noted for activities requiring exertion only, able to work full-time with difficulty in jobs requiring exertion
70	Mild symptoms at rest, some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work full-time with difficulty
60	Mild to moderate symptoms at rest, daily activity limitation clearly noted. Overall functioning 70%-90%. Unable to work full-time in jobs requiring physical labor, but able to work full-time in light activity if hours flexible
50	Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity, overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or desk work 4-5 hours a day, but requires rest periods
40	Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity, overall activity level reduced to 50%-70% of expected. Not confined to house. Unable to perform strenuous duties, able to perform light duty or desk work 3-4 hours a day, but requires rest periods
30	Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overeall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform desk work 2-3 hours a day, but requires rest periods
20	Moderate to severe symptoms at rest. Unable to perform strenuous activity, overall activity 30-50% of expected. Unable to leave house except rarely, confined to bed most of day, unable to concentrate for more than 1 hour a day
10	Severe symptoms at rest, bedridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration
0	Severe symptoms on a continuous basis, bedridden constantly, unable to care for self

 

[InitialConditions]

We've discussed this case previously here: https://www.s4me.info/threads/uk-dr-sarah-myhill.18699/post-372441

I can't remember the reason why it's in the Myhill thread, but there was a reason!

EDIT: The author references Dr Myhill frequently in the website article, and it seems he may have been a patient of hers.

 

[InitialConditions]

I don't really know enough about proprioception but it seems anything that invovles the brain's processing of signals can be affected, and this is just one part of the puzzle for some patients.

 

[Oscar220]

Related Phoenix Rising thread from a few years back, describes a pwME's treatment by Dr Silva (mods please delete if inappropriate):

DISCUSSION: Proprioception Dysfunction - treating this improved my symptoms (I think!)

Short Summary: I saw an ophthalmologist who diagnosed me as having a proprioception problem (proprioception is your perception of your body position). He prescribed special lenses and an easy physical protocol. Shortly after these changes I had a significant and sustained improvement, which...

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