For those who might be interested, I received the message below from PhotoPharmics today providing an update to a light therapy clinical trial that I have been tracking for close to a year:
Celeste Light for PD Trial Update
As you may already know, organizing clinical trials can be difficult. We are working diligently to get everything in place for our Celeste Light for PD trial—a phase 3 clinical trial in which we will show the efficacy of our proprietary phototherapy device to treat the symptoms of Parkinson's disease.
This trial will be of great interest to people with Parkinson's, caregivers, support group members, physicians and more. If you know someone who would be interested in trial updates, please direct them to PhotoPharmics.com/Connect.
I have been corresponding with Dan Adams regarding this trial since June 2021. Last correspondence with him was in January 2022 and this was his response to my question regarding an update to the trial:
"I’m sorry about the delay. Things always seem to take much longer than we expect. There were several details with the FDA, and some trial details we still haven’t resolved yet, but we are getting much closer. My guess is late spring, early summer this year (hopefully).
Thank you for still being interested and supporting us!
Best,
Dan"
Trial info on clinicaltrials.gov
DB RCT for Specialized Phototherapy in Parkinson's Disease. (LIGHT-PD)
hi canddy - i did my own GOOGLE research on light therapy -- plus i contacted the manufacturer of one of the devices in China and contacted directly another guy -- a Phd who is selling them... NONE of my research shows conclusively the photobiomodulation works... but that there are some studies which show 'improvement' -- but lacking sufficient documentation to convince me.... the devices range from $300 to $7000 ... so if you have the extra money (i don't) -- try one out. INSTEAD... I've been using natural sunlight daily (when the sun is out... and mostly it is in southern california) .. 15 to 30 minutes... sunlight emits powerful infrared light (same as the helmets) -- and it is FREE!Very best of luck to you!
Thanks for the post - participating in a clinical trial for a light therapy device does not cost the patient anything. What I posted is information regarding a clinical trial not a sales pitch for a light therapy device.
There are, in fact, 12 studies in the biomedical literature showing that intervening in circadian function using light therapy is an effective way of improving many symptoms of Parkinson's disease. (Artemenko & Levin, 1996; Paus et al, 2007; Willis & Turner, 2007; Willis et al 2012; Romenets et al, 2013; Videnovic et al, 2017; Martino et al, 2018; Willis et al, 2018; Smilowski et al, 2019; Raymackers et al, 2019; Rutten et al, 2019; Endo et al, 2020.) If you cannot get them let me know and I will send. Note that 5 of them are double blind placebo controlled trials. The real trick to making light work is 'how' it is applied. While getting sunlight at the right time of day if the intensity is not right and the time of administration within the 24 hour cycle is not right then it will not work. There are many types of lights manufactured but few work effectively because they are designed poorly. If you would like to know more scan the net as there are are a few research clinics world wide that have made great progress using light therapy. Interfering with circadian function will be the next big step in helping PD patients. Cheers
thanks - i'll check the links out -- but based on my earlier research, i'm still skeptical -- EXAMPLE #1 ... "Show me"... show me VIDEO testimonials from real PD patients who have had meaningful reductions in their symptoms -- as you know, the "placebo effect" is very powerful when dealing with new therapies
Please tell me on what 'study' you base this comment as i sun daily as a therapy to my PD and i can tell you that my face and eye tremors have decreased significantly ..."While getting sunlight at the right time of day if the intensity is not right and the time of administration within the 24 hour cycle is not right then it will not work."
Thank you. I can see you have done some in-depth research. Please continue to contribute whatever information and links that can help us in the PD community.These are my results from the info you provided:
Artemenko & Levin, 1996 ...........This 26 year old study is 'worthless' if no one in the PD Research community has developed anything to benefit PD patients
Let me comment on your responses, each in turn, to perhaps provide a bit more insight.
The age of any scientific work is somewhat irrelevant in most cases. In fact the work of Parkinson was published in 1817 and still forms that basis of the modern neurological approach to this disease. Also the work of the great neurologist Charcot in the 1850s was the first to imply circadian involvement, as did Parkinson himself, so one can't just throw this stuff out as it formed the basis for one of the most contemporary avenues currently the subject of scientific pursuit. Each article written must be thoroughly explored and one cannot make decisions on the value of the content without doing so. In fact, the article by Artemenko and Levin is in Russian and it is a brilliant piece of work (You will have to either be able to read Russian or to have it translated). It showed that light and drug combinations could reduce the adverse effects (dyskinesia) of dopamine replacement and the need for high doses of drug. This finding alone has formed the basis for a current approach that proved useful in a controlled trial (proving it was not a placebo effect (See Willis et. al, 2018).
That you could not find many of the other articles suggests that you might need to consult a professional that can readily obtain these articles for you. They are all cited in Index Medicus, Google Scholar and Medline. If you go to Medline and use the search terms 'Martino' , Parkinson's and Sleep, you will limit your field and pick that citation up quickly. Sleep Medicine is one of the top medical journals in the world that often deals with sleep in PD but you will have to purchase the article, unless you have someone that can get it for you.
About the comment regarding the Raymackers et al, 2019 publication, I respectfully think that one cannot conclude it was simply a 'placebo effect' as it was a blinded controlled trial. The weakest part of the study was that it only showed a significant improvement in daytime fatigue (a major problem in the quality of life for PD patients). I think, however, when compared to other studies with light, the effects were not as broad reaching across many symptoms as seen in other studies. This reflects on the poor delivery of the light stimulus that this source of light provides (Compare this when you obtain copies of the studies you missed.)
You did make the important realization that sleep was most readily improved by light treatment . But this also is dependent upon how the light is delivered. It varies greatly across the type of different light sources.(i.e. glass vs stand alone unit). By the way, the use of light for treating depression and insomnia did not start with its use in PD. There is a long, involved scientific literature on the use of light for this purpose starting in 1984 (Rosenthal et al) . Artemenko picked up on this in 1996 and asked the question as to whether one could fix the insomnia and depression of PD with light and thereby reduce the heavy drug burden that impacts badly on the PD patient. Given that 'polypharmacy' is a major problem in PD, I believe this was a very useful pursuit to improve the quality of life in these patients.
Also, if one examines the brunt of the PD literature understanding circadian (day/night) function in PD is one of the major areas that is now pursued in Neurology, world-wide. Given that light is the strongest "Zeitgeber" or time keeper (better than melatonin) this is the least invasive and most powerful way to intervene in circadian function. In addition, the collective mentality that has emerged from this is that if you repair sleep in a chronic disease than the quality of life and the disease itself will improve...and this is what these studies are finding.
One last comment. Even though we would all like to know the best way to improve patients with PD, in another regard there is nothing wrong with a placebo effect. There are some groups in Europe (i.e. Professor Bennedetti) whom are working on the placebo response in PD. After all, wouldn't it be better to apply a treatment that fixed the patient without the potential of producing permanent, dangerous side effects? So you are quite right about how 'powerful' the placebo effect is, we just need to know how to harness it so it is useful for alleviating the suffering of PD and other disorders.
Also, just to respond to the person who sits in the sun to fix their 'face tremor' . All can say is that while it is not a common symptom of PD, getting into the sun and sleeping well at night are important as well. But this is not the same as the that provided by intervention using bright light therapy. Light therapy is more like that which occurs with defibrillation or ECT. One is 'shocking' the system into functioning normally again-but it a very gradual process as the circadian system responds very slowly. Very incremental and it has to be done daily. It also has to be done at the right time in the dark/light cycle. PD patients are what is called 'phased advanced' which puts their entire physiology out of phase. Light at the right time in the 24 hour period is critical. So, while it is important to get daily sunlight and darkness for sleep, it is hard to say precisely what sun in the morning , although helpful, is doing for that persons PD, per se.
I hope this helps to explain and that you can gain access to the mentioned articles so that you can study them in detail.
Cheers
my grandmom spoke Russian! ... sadly, not me... thank you VERY much for the detailed reply -- it will take me some time to digest it all ... but the first reference you gave me, searching 'content and documents' ...unfortunately -- failed:
The effect of light exposure on insomnia and nocturnal movement in
Parkinson's disease: an open label, retrospective, longitudinal study
Jessica K. Martino a, b, Christopher B. Freelance a, c, Gregory L. Willis a, *
a The Bronowski Institute of Behavioural Neuroscience, The Bronowski Clinic, Coliban Medical Centre, 19 Jennings Street, Kyneton, Victoria, 3444, Australia
b The Cairnmillar Institute, School of Psychology, Counselling and Psychotherapy, 993 Burke Road, Camberwell, Victoria, 3142, Australia
c School of BioSciences, The University of Melbourne, Parkville, Victoria, 3010, Australia
ok thanks but now i'm even MORE skeptical about 'light therapy' ... remember i told you that my daily sunlight was helping tremendously? ...Well... it's not doing that the last couple of days. Bummer.
Sorry to hear that. But I am not sure why it would put you off light therapy. The article shows that it worked for 140 PD patients for more than 5 years. (When done in a way that corresponds to affecting circadian function.) Wouldn't you conclude that perhaps getting sunlight in the morning may not be as effective? Perhaps reading the other citations might help to clarify this a bit better. Perhaps you were just having a bad day. I hope morning sunlight continues providing relief if you commence the practice again. Perhaps combining it with proper circadian intervention might help that along.
which study? please give me that link here (not just the reference) that had 140 trial subjects. thank you very much
in case you missed this... PD Warrier INSIGHT conference- one of the speakers talked about photobiomodulation (i haven't watched it yet) - here's the link:---------------------------------------------------------------
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Clinical trial
I found this study intriguing. I signed up for it and was accepted. They are still enrolling if it's anybody's cup of tea.
UPDATE on phase 3 clinical trial progress from Zhittya Genesis Medicine
MOBILE PHONE APP TRIAL – VOLUNTEERS NEEDED
