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 matches the improvements seen by five subjects in a small study run by the ophthalmologist.
Despite the improvements, I am still largely house bound and spent most of my days laying down, so I am not thinking this is a miracle cure!
Compulsory N=1 disclaimer:
I cannot be sure this is the cause of my improvement. However, there are objective signs that this protocol has had a physical effect on me.
Background:
I stumbled across this topic on Reddit where I found a paper (attached to this post) written by the ophthalmologist who I saw, Dr Orlando Alves da Silva. I managed to contact one of the original participants in the study who gave me further information. Dr Alves da Silva normally prescribes his active present lenses to people with dyslexia or ADHD. It was purely by chance that he found it appeared to help someone with ME/CFS (the one participant in the study I spoke with). That was the reason for testing on further ME/CFS subjects in this study.
The basic idea is that for some people a proprioceptive mis-calibration can cause improper posture or improper muscle tensing. The link to ME/CFS is not well understood. My theory is that improper tensing could be contributing to brainstem / blood vessel / nerve compression by pulling the neck / shoulder / skull bones into the wrong position.
I believe I was the 10th ME/CFS patient that Dr others DeSilva saw, and I understand that he has diagnosed all 10 as having this proprioceptive problem.
Background about me:
I have been diagnosed by a UK neruosurgeon as having some signs of slight instability (i.e. craniocervical instability, CCI) but nothing serious enough to warrant surgery. Most significantly, my internal jugular veins are severely compressed between the C1 vertebra and the styloid process on both sides. I do not have EDS or hypermobility and my main symptoms are fatigue, PEM, headaches, and orthostatic intolerance.
Signs that indicate this might help you:
1. Is your neck and/or upper back stiff, restricted in its movement, and/or painful? (I suspect this may be true for many of us and it's not a particularly useful diagnostic.)
2. Do you have poor posture, possibly with one shoulder lower than the other, one leg longer than the other, or some similar imbalance? When you stand normally, do you support yourself predominantly on one foot?
3. If you move your feet around without looking at them, can you accurately estimate in which direction they are pointing when you do finally look at them? It helps to have someone else move your feet without you looking at what they are doing.
For me the main indicators were numbers two and three. I've always noticed in photos that my right shoulder is lower than my left I have a mild kyphosis of my upper back. Also, for some reason, I’d always noticed that when looking away from my feet I would think they were parallel and then I’d look down to discover they were not. No idea why I was aware of that.
The protocol:
My experience:
Within a few weeks after wearing the active prism lenses daily, and practising the physical elements of the protocol, my headaches (which were daily, persistent, and painful) significantly alleviated. My energy threshold and PEM response to over doing things both improved. This change has now lasted for six months. How I feel on a day-to-day basis has become much more consistent, and my average day is significantly less painful and more enjoyable than before. I am still largely house bound and spent most of my days laying down.
Of course, I cannot say definitively that this change is due to the glasses. However the change did happen shortly after starting to wear them.
Objective physical changes:
Part of the diagnosis and examination process involves physical tests - with and without the active prism lenses. For example, opening the mouth as wide as possible. In my case I could open my mouth wider with the active prism lenses on. It seemed kind of magical. Another example is the exercise where you reach one hand over your head and the other up between your shoulder blades and try and touch them behind your back. After a few days of wearing the glasses I found I could do this with much more ease than before. Again, strange. I also notice that I now stand with my feet more parallel, and I am able to better gauge their direction without looking at them.
Conclusion:
I asked Dr Alves da Silva and he was happy for me to share his details online. My understanding is that the active prism lenses and accompanying protocol were developed by him. He is based in Lisbon, and I believe he has trained up some ophthalmologists in other countries such as Brazil, France, Spain, and possibly Germany. As far as I am aware, there are no practitioners in the US or the UK.
The appointment was inexpensive, around €100. The active prism lenses were more expensive at around €800 for two pairs. The cost was increased by my need for a fast turnaround time.
If anyone is interested in exploring this further, and considering visiting an ophthalmologist, I will write a document with details on the practicalities such as the specific types of frames that are compatible with the active prism lenses.
https://www.orlandoalvesdasilva.org/
EDIT
I forgot to attach the paper, but @anne_likes_red posted it a few posts down. I've attached it here too
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 matches the improvements seen by five subjects in a small study run by the ophthalmologist.
Despite the improvements, I am still largely house bound and spent most of my days laying down, so I am not thinking this is a miracle cure!
Compulsory N=1 disclaimer:
I cannot be sure this is the cause of my improvement. However, there are objective signs that this protocol has had a physical effect on me.
Background:
I stumbled across this topic on Reddit where I found a paper (attached to this post) written by the ophthalmologist who I saw, Dr Orlando Alves da Silva. I managed to contact one of the original participants in the study who gave me further information. Dr Alves da Silva normally prescribes his active present lenses to people with dyslexia or ADHD. It was purely by chance that he found it appeared to help someone with ME/CFS (the one participant in the study I spoke with). That was the reason for testing on further ME/CFS subjects in this study.
The basic idea is that for some people a proprioceptive mis-calibration can cause improper posture or improper muscle tensing. The link to ME/CFS is not well understood. My theory is that improper tensing could be contributing to brainstem / blood vessel / nerve compression by pulling the neck / shoulder / skull bones into the wrong position.
I believe I was the 10th ME/CFS patient that Dr others DeSilva saw, and I understand that he has diagnosed all 10 as having this proprioceptive problem.
Background about me:
I have been diagnosed by a UK neruosurgeon as having some signs of slight instability (i.e. craniocervical instability, CCI) but nothing serious enough to warrant surgery. Most significantly, my internal jugular veins are severely compressed between the C1 vertebra and the styloid process on both sides. I do not have EDS or hypermobility and my main symptoms are fatigue, PEM, headaches, and orthostatic intolerance.
Signs that indicate this might help you:
1. Is your neck and/or upper back stiff, restricted in its movement, and/or painful? (I suspect this may be true for many of us and it's not a particularly useful diagnostic.)
2. Do you have poor posture, possibly with one shoulder lower than the other, one leg longer than the other, or some similar imbalance? When you stand normally, do you support yourself predominantly on one foot?
3. If you move your feet around without looking at them, can you accurately estimate in which direction they are pointing when you do finally look at them? It helps to have someone else move your feet without you looking at what they are doing.
For me the main indicators were numbers two and three. I've always noticed in photos that my right shoulder is lower than my left I have a mild kyphosis of my upper back. Also, for some reason, I’d always noticed that when looking away from my feet I would think they were parallel and then I’d look down to discover they were not. No idea why I was aware of that.
The protocol:
- Wearing active prism lenses prescribed by Dr Alves da Silva. These are made by an opticians very near to his practice in Lisbon.
- Some physical tips to encourage good posture.
- Breathing exercises.
- Infrared-reflecting insoles (to increase the amount of proprioceptive input to the soles of the feet).
- Sleeping on your front on a very thin mattress with a firm support underneath - he shows you the correct position.
My experience:
Within a few weeks after wearing the active prism lenses daily, and practising the physical elements of the protocol, my headaches (which were daily, persistent, and painful) significantly alleviated. My energy threshold and PEM response to over doing things both improved. This change has now lasted for six months. How I feel on a day-to-day basis has become much more consistent, and my average day is significantly less painful and more enjoyable than before. I am still largely house bound and spent most of my days laying down.
Of course, I cannot say definitively that this change is due to the glasses. However the change did happen shortly after starting to wear them.
Objective physical changes:
Part of the diagnosis and examination process involves physical tests - with and without the active prism lenses. For example, opening the mouth as wide as possible. In my case I could open my mouth wider with the active prism lenses on. It seemed kind of magical. Another example is the exercise where you reach one hand over your head and the other up between your shoulder blades and try and touch them behind your back. After a few days of wearing the glasses I found I could do this with much more ease than before. Again, strange. I also notice that I now stand with my feet more parallel, and I am able to better gauge their direction without looking at them.
Conclusion:
I asked Dr Alves da Silva and he was happy for me to share his details online. My understanding is that the active prism lenses and accompanying protocol were developed by him. He is based in Lisbon, and I believe he has trained up some ophthalmologists in other countries such as Brazil, France, Spain, and possibly Germany. As far as I am aware, there are no practitioners in the US or the UK.
The appointment was inexpensive, around €100. The active prism lenses were more expensive at around €800 for two pairs. The cost was increased by my need for a fast turnaround time.
If anyone is interested in exploring this further, and considering visiting an ophthalmologist, I will write a document with details on the practicalities such as the specific types of frames that are compatible with the active prism lenses.
https://www.orlandoalvesdasilva.org/
EDIT
I forgot to attach the paper, but @anne_likes_red posted it a few posts down. I've attached it here too
Last edited:
3 was a real eye opener!
