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United Kingdom: Invest in ME news
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Dolphin
Senior Member (Voting Rights)
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Dolphin
Senior Member (Voting Rights)
Ash
Senior Member (Voting Rights)
I’m sceptical that this would make any really significant difference. But I do want one to take home anyway. I love that stuff, and it looks more space efficient and economical to run than a full sauna room, which tbh I’d prefer. But I’ll take this, sure.
From the Quadram Website:
As far as I can tell from an internet search, red light penetrates at most 2 mm into skin. From the picture in the tweet above, the participants are fully clothed, and there is just one light shining onto a masked face. The description of the therapy is that the person sits in the red light for two minutes a day, for two weeks. Even if red light did have an effect on the mitochondria of the skin cells exposed to it, the result will surely be trivial. I'm finding it hard to see this trial, called 'Light ME Up' as anything but a joke.
There are ten participants all receiving the therapy, unblinded. Yes, the investigators are trialling objective measures, but it seems that the investigators missed the memo about the need for objective measures of activity to be carried out for at least a month and preferably longer. If the participants believe in the therapy, it is quite likely that they will increase activity levels for the two weeks during which they are being 'lit up'. And, for the cognitive testing, there are no controls, so presumably no way to remove the learning effect from the results.
Perhaps I am wrong, but my feeling is that this does not reflect well on the Quadram Institute, or the research funders, Invest in ME. The last line of that quote is that "high quality biomedical research is vital if we are going to fully understand ME". Well, yes, but this study isn't going to do it. What it will do, I think, is increase the credibility of an almost certainly useless treatment, decrease the credibility of the parties involved, and cause thousands of people to waste money and time on yet another quack therapy.
We need better than this. If scarce funds for ME/CFS research are going to be used to trial red light therapy, for goodness sake design a decent study where the result will actually tell us something useful.
As far as I can tell from an internet search, red light penetrates at most 2 mm into skin. From the picture in the tweet above, the participants are fully clothed, and there is just one light shining onto a masked face. The description of the therapy is that the person sits in the red light for two minutes a day, for two weeks. Even if red light did have an effect on the mitochondria of the skin cells exposed to it, the result will surely be trivial. I'm finding it hard to see this trial, called 'Light ME Up' as anything but a joke.
There are ten participants all receiving the therapy, unblinded. Yes, the investigators are trialling objective measures, but it seems that the investigators missed the memo about the need for objective measures of activity to be carried out for at least a month and preferably longer. If the participants believe in the therapy, it is quite likely that they will increase activity levels for the two weeks during which they are being 'lit up'. And, for the cognitive testing, there are no controls, so presumably no way to remove the learning effect from the results.
Perhaps I am wrong, but my feeling is that this does not reflect well on the Quadram Institute, or the research funders, Invest in ME. The last line of that quote is that "high quality biomedical research is vital if we are going to fully understand ME". Well, yes, but this study isn't going to do it. What it will do, I think, is increase the credibility of an almost certainly useless treatment, decrease the credibility of the parties involved, and cause thousands of people to waste money and time on yet another quack therapy.
We need better than this. If scarce funds for ME/CFS research are going to be used to trial red light therapy, for goodness sake design a decent study where the result will actually tell us something useful.
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Ash
Senior Member (Voting Rights)
Yes, @Hutan.
I myself understand the true value of a good yet to be scientifically validated hippie treatment, so I looked into red lights more than a decade ago. I also have concerns.
Despite marketing excitement around the lights, there were some obstacles to moving on to the validation stage. Not least because people who recovered to some extent from the severity of their illness were doing some other stuff too. Oh I’d say at rate of exactly a 100% of the sample size of the enthusiastic users, they were simultaneously engaged in let’s say around 900 other similarly speculative treatments at the same time, as well as a few pharmaceuticals. Because you have to leave no stone unturned when you health is on the line. So I am told.
But also I can tell you, that if you’re gonna do it correctly you have to get the light super close and put it inside a box or something and shine it at your naked skin, usually on your belly and back, for at minimum 15 minutes, twice a day if possible. Then you’re gonna have to wait about 6,9,18months at least to get noticeable results.
But because the light is close ish to your skin and in the ones that I looked at very warm, because as everyone knows an LED bulb of any type not only isn’t therapeutic but also actually bad for you, so you gotta use halogen, which may or may not set your house on fire, but fortunately from its warm glow your pain will diminish immediately for the time your under the light so that a good incentive to keep up your program light bathing (yes you could of used a hot water bottle instead but that doesn’t have the power to eventually eradicate all the badness in your bloodstream, viral, bacterial and fungal, or something else bad that your body wasn’t effectively cleaning out of your blood probably heavy metals you know stuff like that)
So anyway I was willing to give it a try. I’d watched a few fun videos of how to rig up a mad scientist scaffolding bridge under which to light bath and I’d watched a few less fun videos on the importance of getting the correct wavelengths here and how dangerous other companies and all the non optimal wavelength red lights might be.
And at that point because I’m not really a person whose ready to commit to my health journey and do whatever it takes, I decided that on balance while the whole idea did appeal to my theatrical tastes, and as a migraine haver I like do like red light better than any other, so yeah I did have a natural affinity for imagining it as a magical universal cure for everything, ultimately I because I’m quite fickle, and easily distracted and it all felt a bit intense, I might maybe not quite have what it takes to see such a project through.
So here I am horribly sick, most likely because I decided I wasn’t up for the DIY involved or the half an hour a day lying on my floor under my mini bridge, or the ever so slightly increased risk of a house fire.
Also I forgot to mention earlier that getting the right protective eye wear was important too, and I did find the specification around that a little bit intimidating also, so yeah fire and possible eye damage and the risk of accidentally buying the wrong wavelength of red light and causing cancer instead of curing it.
Sometimes you think you’ve found a fun new project and suddenly it's all heavy metals and wondering if DIY electronics is ethically sound as hobby to have in a flat.
So with that background out the way you won’t be surprised to hear that I couldn’t be bothered to read this research stuff here properly either, but let me assure you that if this doesn’t work, it’s because they’re using an LED bulb or the wrong wavelength. Everyone in the videos was very specific about that. Seems like a mistake these slap dash researchers would be likely to make, seeing as they’re such rank such amateurs that they don’t even know how long you’re supposed to cook your self for. Or that you’re not really supposed to shine it in your face.
I myself understand the true value of a good yet to be scientifically validated hippie treatment, so I looked into red lights more than a decade ago. I also have concerns.
Despite marketing excitement around the lights, there were some obstacles to moving on to the validation stage. Not least because people who recovered to some extent from the severity of their illness were doing some other stuff too. Oh I’d say at rate of exactly a 100% of the sample size of the enthusiastic users, they were simultaneously engaged in let’s say around 900 other similarly speculative treatments at the same time, as well as a few pharmaceuticals. Because you have to leave no stone unturned when you health is on the line. So I am told.
But also I can tell you, that if you’re gonna do it correctly you have to get the light super close and put it inside a box or something and shine it at your naked skin, usually on your belly and back, for at minimum 15 minutes, twice a day if possible. Then you’re gonna have to wait about 6,9,18months at least to get noticeable results.
But because the light is close ish to your skin and in the ones that I looked at very warm, because as everyone knows an LED bulb of any type not only isn’t therapeutic but also actually bad for you, so you gotta use halogen, which may or may not set your house on fire, but fortunately from its warm glow your pain will diminish immediately for the time your under the light so that a good incentive to keep up your program light bathing (yes you could of used a hot water bottle instead but that doesn’t have the power to eventually eradicate all the badness in your bloodstream, viral, bacterial and fungal, or something else bad that your body wasn’t effectively cleaning out of your blood probably heavy metals you know stuff like that)
So anyway I was willing to give it a try. I’d watched a few fun videos of how to rig up a mad scientist scaffolding bridge under which to light bath and I’d watched a few less fun videos on the importance of getting the correct wavelengths here and how dangerous other companies and all the non optimal wavelength red lights might be.
And at that point because I’m not really a person whose ready to commit to my health journey and do whatever it takes, I decided that on balance while the whole idea did appeal to my theatrical tastes, and as a migraine haver I like do like red light better than any other, so yeah I did have a natural affinity for imagining it as a magical universal cure for everything, ultimately I because I’m quite fickle, and easily distracted and it all felt a bit intense, I might maybe not quite have what it takes to see such a project through.
So here I am horribly sick, most likely because I decided I wasn’t up for the DIY involved or the half an hour a day lying on my floor under my mini bridge, or the ever so slightly increased risk of a house fire.
Also I forgot to mention earlier that getting the right protective eye wear was important too, and I did find the specification around that a little bit intimidating also, so yeah fire and possible eye damage and the risk of accidentally buying the wrong wavelength of red light and causing cancer instead of curing it.
Sometimes you think you’ve found a fun new project and suddenly it's all heavy metals and wondering if DIY electronics is ethically sound as hobby to have in a flat.
So with that background out the way you won’t be surprised to hear that I couldn’t be bothered to read this research stuff here properly either, but let me assure you that if this doesn’t work, it’s because they’re using an LED bulb or the wrong wavelength. Everyone in the videos was very specific about that. Seems like a mistake these slap dash researchers would be likely to make, seeing as they’re such rank such amateurs that they don’t even know how long you’re supposed to cook your self for. Or that you’re not really supposed to shine it in your face.
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Kitty
Senior Member (Voting Rights)
You'd also think two minutes in the sun would be more effective, since it emits a lot of red light.
Ash
Senior Member (Voting Rights)
I was going to mention this. But I thought it might be taken as an example of ME patients harassing researchers out of their chosen fields. So I am conflicted here because I don’t know whether to feel chagrin at my relative lack of courage in speaking up for physics on this one, or concern that you may be making us all look a bit negative or ungrateful here @Kitty…
However as I am in position to share the counter argument here, after my own prior let’s say also for the sake of argument extensive research, I will say that the rational for using this tinny tiny red light device over the sun, is that the sun is powerful enough to give you skin cancer even if you don’t burn yourself under it, where as this red light will only cause cancer if you buy it from the wrong company without doing your research.
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https://twitter.com/user/status/1795346196367917462
Janet Dafoe
We’re going to invest in ME which is just south of Cambridge and I’m wondering if anybody over there would like to hang out with us and figure out something interesting to do for a couple days afterwards starting July 1.
Is there a thread for this year’s conference?
Janet Dafoe
We’re going to invest in ME which is just south of Cambridge and I’m wondering if anybody over there would like to hang out with us and figure out something interesting to do for a couple days afterwards starting July 1.
Is there a thread for this year’s conference?
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Sasha
Senior Member (Voting Rights)
What is Invest in ME Research doing these days? Are they still active? Can anyone link me to their annual report?
[Edit] Found the annual report.
[Edit] Found the annual report.
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Dolphin
Senior Member (Voting Rights)
"This article describes the essence of Invest in ME Research's decade-long effort to establish a UK/European Centre of Excellence for ME at Norwich Research Park."
https://investinme.org/iimer-newslet-cofefore24.shtml
Says on a number of occasions that a lack of funding funding is what is holding things up.
https://investinme.org/iimer-newslet-cofefore24.shtml
Says on a number of occasions that a lack of funding funding is what is holding things up.
I couldn’t see this here, regarding the DHSC delivery plan:
“Observations from and following the final meeting of the UKCRC ME Research Working Group”
May 2024
https://www.investinme.org/Documents/ukcrc24/ukcrc-epilogue.pdf
“Observations from and following the final meeting of the UKCRC ME Research Working Group”
May 2024
https://www.investinme.org/Documents/ukcrc24/ukcrc-epilogue.pdf
Dolphin
Senior Member (Voting Rights)
https://www.linkedin.com/pulse/inve...-student-bursaries-investinme-research-daffe/
Invest in ME Research Summer Student Bursaries
InvestinME Research
Let's Do Research
March 3, 2025
Inspiring a Future for ME Research
Invest in ME Research, in collaboration with the Quadram Institute at Norwich Research Park, is pleased to announce the Summer Student Bursaries for 2025. These bursaries are designed to support undergraduate students in gaining practical experience in biomedical research, with a focus on Myalgic Encephalomyelitis (ME, sometimes referred to as ME/CFS).
This initiative aligns with the charity's objective of raising education and fostering the next generation of doctors and researchers. As the IiMER chairman stated in the International ME Conference Week 2025 Welcome Message, "We have to do things ourselves in the absence of official support."
The discovery of new treatments relies heavily on research into the causes of the disease. The Summer Student Bursaries provide a unique opportunity for students to contribute to this vital research while developing their skills and knowledge in biomedical science. Simultaneously, it raises awareness of ME and influences the next generation of the medical community, which in turn influences peers. This is not the first time Invest in ME Research has funded summer students, having done so in recent years.
Three eight-week bursaries are being offered, with involvement in various research projects at the Quadram Institute. These projects include investigating the virome in mucosal cavities, exploring fungal and yeast diversity, identifying microbes driving inflammation, analysing the prevalence of fungal infections, and studying gastrointestinal viruses in ME patients. Each project offers hands-on experience with advanced molecular and microbiological techniques, providing a solid foundation for future careers in biomedical research.
More details, including theapplication process, can be found on the Quadram Institute website-
Link to Quadram Institute article
We are grateful to the Quadram Institute and Carding Lab for making this opportunity possible, further building on the excellent Centre of Excellence foundations that already exist in Norwich Research Park.
References
PhDs and Students Funded by Invest in ME Research at our #IIMEC10 conference in London
Invest in ME Research Summer Student Bursaries
InvestinME Research
Let's Do Research
March 3, 2025
Inspiring a Future for ME Research
Invest in ME Research, in collaboration with the Quadram Institute at Norwich Research Park, is pleased to announce the Summer Student Bursaries for 2025. These bursaries are designed to support undergraduate students in gaining practical experience in biomedical research, with a focus on Myalgic Encephalomyelitis (ME, sometimes referred to as ME/CFS).
This initiative aligns with the charity's objective of raising education and fostering the next generation of doctors and researchers. As the IiMER chairman stated in the International ME Conference Week 2025 Welcome Message, "We have to do things ourselves in the absence of official support."
The discovery of new treatments relies heavily on research into the causes of the disease. The Summer Student Bursaries provide a unique opportunity for students to contribute to this vital research while developing their skills and knowledge in biomedical science. Simultaneously, it raises awareness of ME and influences the next generation of the medical community, which in turn influences peers. This is not the first time Invest in ME Research has funded summer students, having done so in recent years.
Three eight-week bursaries are being offered, with involvement in various research projects at the Quadram Institute. These projects include investigating the virome in mucosal cavities, exploring fungal and yeast diversity, identifying microbes driving inflammation, analysing the prevalence of fungal infections, and studying gastrointestinal viruses in ME patients. Each project offers hands-on experience with advanced molecular and microbiological techniques, providing a solid foundation for future careers in biomedical research.
More details, including theapplication process, can be found on the Quadram Institute website-
Link to Quadram Institute article
We are grateful to the Quadram Institute and Carding Lab for making this opportunity possible, further building on the excellent Centre of Excellence foundations that already exist in Norwich Research Park.
References
- Medical Students in ME Research
- International ME Conference Week 2025 Welcome Message
- How We Effectively Energise ME Research
PhDs and Students Funded by Invest in ME Research at our #IIMEC10 conference in London