NOTE: The information in today’s post should not be considered an endorsement of PhotoPharmics or the treatment they are proposing. The author of this blog has had no communication with the company. The information in this post is provided because the author has been asked by readers to discuss it.
In October 2018, at the annual International Movement Disorders Society meeting in Hong Kong, a small biotech firm called “PhotoPharmic” presented a poster entitled “Double-blind controlled trial of Spectramax™ light therapy for the treatment of Parkinson’s disease patients on stable dopaminergic therapy.”
In the poster provided the results of a study in which 45 participants with Parkinson’s were blindly treated with light therapy for 1 hour each evening over the course of 6 months. At the end of the study, the investigators found clinically meaningful improvements in the MDS-UPSDRS rating scale, as well as significant improvements in non-motor measures.
In today’s post, we will discuss what light therapy is, what this study found, and look at what PhotoPharmic plan to do next.
The Tasmanian “light bucket” for Parkinson’s. Source: ABC
It might come as a bit of a surprise to some readers, but one of my favourite stories of 2019 from the world of Parkinson’s research originates from Tasmania.
It is a tale that involves a group of Australian Parkinson’s advocates who somehow cottened on to a seemingly inconceivable idea (treating oneself with a homemade light bucket). But their project was embraced by the local Tasmanian community which is helping out with the research, for example the Dorset community men’s shed is helping to make the light buckets.
And whatsmore they have inspired an Australia-wide “proof-of-concept” clinical trial on the topic.
The trial is being conducted by The University of Sydney School of Medicine and Parkinson’s South Australia. There is also a website where you can follow the various activities surrounding the trial – Click here to see the website.
Designing the helmet for the Sydney clinical trials. Source: ABC
And there is already published research coming out of the clinical study:
Title: “Buckets”: Early Observations on the Use of Red and Infrared Light Helmets in Parkinson’s Disease Patients.
Authors: Hamilton CL, El Khoury H, Hamilton D, Nicklason F, Mitrofanis J.
Journal: Photobiomodul Photomed Laser Surg. 2019 Oct;37(10):615-622.
Now to be clear, I do fully not understand the biology behind the idea, and it would be easy for me to make fun of this whole situation. But I really do love this story. The ivory towers of industry and academic research may scoff at such a story, but I hope that this study will lead to something new and wonderful (the way Joy Milne’s “smell of Parkinson’s” has opened new areas of research – click here to read a previous SoPD post about that).
The light bucket “photobiomodulation” clinical trial for Parkinson’s is a great story about the DIY attitude, community sharing/helping, curiosity & some serious left field thinking (Click here to read a prominent newspaper story about this).
Photobiomodulation? Are you serious? How on Earth can LIGHT help with Parkinson’s?
New data from researchers in Taiwan has intriguing implications for our understanding of the development of Parkinson’s.
An analysis of the enormous national medical database pointed towards towards hepatitis C viral infections as a risk factor for developing Parkinson’s.
But here is the twist in the tale: Interferon-based antiviral therapy reduces that risk back to normal.
In today’s post, we will review the new research, discuss what interferons are, explore what other research has been conducted on interferons in the context of Parkinson’s, and consider the implications of this new research for Parkinson’s.
We have learnt a great deal about Parkinson’s over the last few years via the use of “big data”.
Whether it be the analysis of vast pools of genetic information collected from tens of thousands of individuals with the condition, to analysing massive datasets of longitudinal medical information, these investigations has open new avenues of research and investigation.
For example, “big data” studies have demonstrated that those who smoke cigarettes and drink coffee have a reduced chance of developing Parkinson’s (click here to read a previous SoPD post on this topic). ‘Big data studies have also pointed towards novel therapeutic approaches (click here for a previous SoPD post highighting an example).
Recently, an analysis of medical records from Taiwan have shed new light on another potential influencer of Parkinson’s risk: Hepatitis C
What is Hepatitis C?
“In preparing for battle I have always found that plans are useless, but planning is indispensable”
This quote has been attributed to General Dwight D. Eisenhower (Click here for the full story of this quote), and while the sentence does not immediately make a whole lot of sense, it does apply to our discussion here regarding research in Parkinson’s.
At the start of each year, it is a useful practise to layout what we are expecting and hoping to see in the world of Parkinson’s research over the next 12 months. This can help us better anticipate where ‘the battle’ may go, and allow us to prepare for things further ahead. Where it actually finishes is unpredictable, but where we currently stand will hopefully provide us with a useful measure.
In this post, I will lay out what we believe the next 12 months holds for us with regards to the Parkinson’s-related research.
And be warned: This is usually the longest post of the year.
In the introduction to last year’s outlook I wrote of the dangers of having expectations (Click here to read that post). A wise man (the great Charlie Munger) once said: If you want to lead a happy life, lower your expectations.
It is good advice, and as a rule, I try to follow it in life – I am a cup is completely empty kind of guy. I have no expectations, and so when anything happens – it is magic. I do have ambitions, but no expectations.
And others wrote about managing expectations in 2018 (Click here for a great example).
To put it plainly: Expectations are the primary cause of all disappointment.
Sage wisdom. Source: Unitystone
And it is important, as we look ahead at the next 12 months of Parkinson’s research, we need to be very careful not to have too many (or to build up too many) expectations.
Right, now, with all of that said, it may now befuddle some readers that the theme of the 2019 SoPD outlook is ‘great expectations‘.
Let me explain:
In this end-of-year post we review the year that was 2018.
Month-by-month we will briefly discuss some of the major pieces of research/announcement that have define the year and advanced our understanding of Parkinson’s.
The list is based on nothing more than the author’s personal opinion – apologies to any researchers who feel left out.
And in the next post we will consider what the year ahead (2019) has in store for us.
In the 525600 minutes that made up 2018, a lot happened in the world of Parkinson’s research.
A total of 7672 research papers were published with the keyword ‘Parkinson’s’ according to the Pubmed website (this compared to 7675 for all of 2017 – this obviously represents a dismal failure for the Parkinson’s research community: the first time in quite a while that we haven’t beaten the number of research reports from the previous year!
2018 has been another amazing year for Parkinson’s research. And while I appreciate that a comment like this means little to someone living with the condition on a day-to-day, remarkable progress has been made not only in our understanding of the condition, but also in the various ways in which the research is being done and potential therapies are approaching the condition.
In this post, we will review the year that was by briefly summarising some of the major research-related events of each month in 2018.
And that journey begins with:
At the end of each month the SoPD writes a post which provides an overview of some of the major pieces of Parkinson’s-related research that were made available during December2018.
The post is divided into five parts based on the type of research (Basic biology, disease mechanism, clinical research, other news, and Review articles/videos).
So, what happened during December 2018?
In world news:
7th December – The U.N.’s International Telecommunication Union reported that, by the end of 2018, more than half – a full 51.2 percent – of the world’s population will be using the Internet (Click here to read more about this).
8th December – Drama at the 24th Conference of the Parties to the United Nations Framework Convention on Climate Change (COP24) meeting in Katowice, Poland. The US, Saudi Arabia, Russia and Kuwait object to adopting the scientific report – which was commissioned at the 2015 meeting. The study suggests that the world is now “completely off track” on climate change, heading towards a 3 degree C. rise by the end of this century rather than a mere 1.5 degree C. rise (Click here to read more about this).
12th December – Negotiators at COP24 in Katowice finally secured an agreement on a range of measures that will make the Paris climate pact operational in 2020 (Click here to read more about this).
17th December – Astronomers announced that they have identified the most distant object ever observed within our solar system. Currently named “2018 VG18” (but nicknamed ‘Farout’), the 500km (310 miles) wide body is approximately is 120 times further away from the sun than Earth is (to put that in perspective, Pluto is only 34 times – Click here to read more about this).
In the world of Parkinson’s research, a great deal of new research and news was reported:
In December 2018, there were 597 research articles added to the Pubmed website with the tag word “Parkinson’s” attached (7672 for all of 2018 – compared to 7675 for all of 2017….seriously?!? Just 3 papers difference?!?). In addition, there was a wave to news reports regarding various other bits of Parkinson’s research activity (clinical trials, etc).
The top 5 pieces of Parkinson’s news
The SoPD has a policy of not advertising or endorsing products/services.
This rule is in place to avoid any ethical/conflict of interest situations. It does little, however, to stop folks from bombarding the comments sections with links for wondrous magical cures which probably involve more ‘magical’ than actual cure.
Having said all that, every now and then I find or read about something that I think may be of interest to readers. In many of those cases, I can not vouch for the information being provided, but where I think there is the potential for readers to benefit, I am happy to take a chance and share it.
Today’s post is all about one such case: The European Parkinson Therapy Centre
Until very recently, I was working in Parkinson’s research centre in Cambridge (UK).
I conducted both lab- and clinic-based research on Parkinson’s in the lab of Prof Roger Barker. And it was in the clinic – several years ago – that I started hearing about a mysterious place that was not offering ‘to cure’ people of Parkinson’s, but rather helping them to live a better life with the condition.
Initially it was just a trickle of questions:
“Have you ever heard of this therapy place in Europe for people with Parkinson’s?” (“Nope, sorry” was my response).
But then an individual came in for their assessment, and spoke with tremendous enthusiasm about their own personal experience of visiting “this wonderful place in Italy” (“Sounds very interesting,” was my response, “Tell me more“).
Gradually, more and more people started sharing their own stories with me (both in the clinic, at support group meetings, and via correspondence to the SoPD website) about the place in Italy. And eventually it all led to me making some inquiries about the European Parkinson Therapy Centre.
What is the European Parkinson Therapy Centre?
It is one of the most frequent non-motor features of Parkinson’s and yet it is one of the least publicly discussed.
The word ‘constipation’ is generally used to describe bowel movements that are infrequent or difficult to pass. The stool is often dry, lumpy and hard, and problematic to expel. Other symptoms can include abdominal pain, bloating, and the feeling that one has not completely passed the bowel movement.
In today’s post we look at what can cause constipation, why it may be so common in Parkinson’s, discuss what can be done to alleviate it, and look at clinical trials focused on this issue.
As many as 1 in 5 people say they have suffered from chronic (long-term) constipation at some point in their lives.
It results in more than 2.5 million hospital and physicians visits per year in the USA.
And Americans spend more than $700 million on treatments for it annually (Source).
More importantly, constipation is considered by many researchers to be a risk factor for developing Parkinson’s, as many people in the affected community claim to have experienced constipation for long periods prior to diagnosis.
Why this is, what is being done to research it, and what can be done about constipation in Parkinson’s is the topic of today’s post. But first, let’s start with the obvious question:
What is constipation?
Regular readers will be aware that here at the SoPD, we are on a mission to change the way we clinically test drugs (Click here for the most recent rant on this topic).
We have a lot of interesting drugs waiting in the pipeline to be clinically tested and an eager (read: desperate) population of individuals affected by Parkinson’s, but we are missing one critical part of the equation: better tools of assessment.
How can we determine whether a drug is actually working or not? And how can we better monitor people over time on said drug?
Our current methods assessing individuals with Parkinson’s rely heavily on clinical rating scales and brain imaging. These are basic tools at best, conducted episodically (annually in general, or once every 2-6 months during a clinical trial), and provide little in the way of useful objective data (on an individual basis).
In today’s post, we will look at a single aspect of Parkinson’s – sleep – and try to nut-out a better/more informative method of assessing it over time.
The Bluesky project. Source: Mirror
Last week tech industry giants Pfizer and IBM made an big announcement.
It was news that I have been quietly waiting to hear for some time.
It related to their “BlueSky Project” – a collaboration between the two companies to provide better methods of assessment/monitoring of Parkinson’s.
The two companies announced that they are now ready to start accepting the first participants for a new clinical trial.
And it is a really intriguing study for one simple reason:
The entire trial will take place inside one house.
This week Austrian biotech firm, AFFiRiS AG, made an announcement regarding their experimental immunotherapy/’vaccine’ approach for Parkinson’s.
In their press release, the company provided the results of a long-term Phase I clinical trial testing the tolerability and safety of their treatment AFFITOPE® PD01A.
The treatment was found to be safe and well-tolerated in people with Parkinson’s. But there was one sentence which was particularly intriguing in the press release regarding clinical symptoms.
In today’s post, we will discuss what is meant by ‘immunotherapy’, outline what this particular clinical trial involved, review the results, and explore what this could mean for the Parkinson’s community.
I have previously mentioned on this website that any ‘cure for Parkinson’s’ is going to require three components:
- A disease halting mechanism
- A neuroprotective agent
- Some form of cell replacement therapy
This week we got some interesting clinical news regarding the one of these components: A disease halting mechanism
Clinical trial results from Austria suggest that a new immunotherapy approach in people with Parkinson’s is both safe and well tolerated over long periods of time.
What is immunotherapy?
This week multiple research groups at the University of Oxford and Boston-based FORMA Therapeutics announced a collaboration to identify, validate and develop deubiquitinating enzyme (DUB) inhibitors for the treatment of neurodegenerative conditions, like Parkinson’s.
But what exactly are DUB inhibitors? And how do they work?
In today’s post, we will answer these questions, look at what the new collaboration involves, and look at what else is happening with DUB inhibitors for Parkinson’s.
Dubstep is a genre of electronic dance music that originated in South London in the late 1990s. Only recently -in the 2010s – has the culture really become more mainstream. And while I have a hard time appreciating the heavy bass music (man, I am becoming a grumpy old man before my time), it is amazing to watch some of the dancers who robotically embody this form of music:
The guy on the right is named Marquese Scott. Sometimes he simply defies the laws of physics.
The title of today’s post is a play on words, because rather than doing ‘Dubstep’ we are going to be discussing how to ‘DUB-stop’.
Researchers in Oxford have recently signed an agreement with a US company to focus resources and attention on a new approach for tackling neurodegenerative conditions, including Parkinson’s.
What they are proposing is a complicated biological dance.
Their idea: to stop deubiquitinating (DUB) enzymes.
What are deubiquitinating enzymes?