United Kingdom: Invest in ME news

https://www.investinme.org/ce-blog-2309-01.shtml

 

Invest in ME Research LunaNova Fellowship

https://jobs.quadram.ac.uk/Details.asp?vacancyID=18813

 

https://quadram.ac.uk/new-study-to-shine-a-light-on-me/

 

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.

 

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.

 

You'd also think two minutes in the sun would be more effective, since it emits a lot of red light.

 

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.

 

We ME peeps can smell bad studies from far.

 

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?

 

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.