If not even Lady Gaga could do it, how the hell can we call attention?

[Folk]

I always though we just need a HUGE celeb to openly say and show how debilitating ME or FMS can be.

Lady Gaga did that and nothing changed.

I mean I have a youtube with 700k Subs and it's my main job, I always though, reaching a certain number of subscribers (like a million) I could make a big difference. Or now since I studied a lot, I kinda know how to viralize a video if I really wanted to... But if not even the reach of Lady Gaga did, what would do?

 

[JES]

Sometimes I wonder about this. We have all these Me Too, LGBT and other movements, but little disease activism. Of course there was the big AIDS activism back in the days and few years ago there was the ice bucket challenge for ALS. But for more common diseases like FM or ME/CFS, not much. I guess one reason is these are often invisible illnesses. When people see someone drop dead from AIDS or ALS, it's a little more impactful.

 

[Not dead yet!]

I certainly don't know either. But I suspect we need a Foundation. like Open Medicine Foundation. Maybe there could be a PR portion of it that could lead the way, getting in touch with Lady Gaga, Cher and others, and planning events once a year. There's also ME Action.

Did Lady Gaga actually say she has ME/CFS? I thought she said Fibro. One problem is that we've diced this problem into tiny pieces and it's better looked at as a general "energy problems" issue. People can easily dismiss ME/CFS if they can think, "But she said Fibro, that's not the same." Especially people who don't know. Before I came to this site, I didn't know that my Fibro diagnosis could be related to my energy problems.

As for impactful, we have people in our community who've gone to Switzerland to commit medical suicide. That's drama enough, I think.

 

[Folk]

I certainly don't know either. But I suspect we need a Foundation. like Open Medicine Foundation. Maybe there could be a PR portion of it that could lead the way, getting in touch with Lady Gaga, Cher and others, and planning events once a year. There's also ME Action.

Did Lady Gaga actually say she has ME/CFS? I thought she said Fibro. One problem is that we've diced this problem into tiny pieces and it's better looked at as a general "energy problems" issue. People can easily dismiss ME/CFS if they can think, "But she said Fibro, that's not the same." Especially people who don't know. Before I came to this site, I didn't know that my Fibro diagnosis could be related to my energy problems.

As for impactful, we have people in our community who've gone to Switzerland to commit medical suicide. That's drama enough, I think.

She said only Fibro
But you see I have both Fibro and ME/CFS dgx... And I'm not sure whether I have both, one of them or none.

The more I look into SIBO and gut issues, the more I think it can cause the same symptoms as Fibro or ME.

So it's the same old problem of which doctor did you go first? I was also dgx with Lyme I just never bothered....

The point is raise awarness to any of them, Fibro or CFS... I think in the long run, one would benefit from the other.

 

[Apo Sci]

Yes the challenges are daunting and I think your observation about Gaga is correct however remember that we are in a time of technological change where we have an incredible resource, the internet, a spreading epidemic (ME) that is affecting everyone, doctors included. Now, given the internet and self-experimentation by very intelligent affected professionals, opens up the possibility that these individuals may be able to self-experiment and get a handle on this problem and make some good discoveries. Look at how many medical treatments came from self-experimentation, heart catheterization, etc. We can see the same thing with ME. As more people have ME awareness will slowly increase and eventually it will be channeled into a rising demand for research. I think the best thing you can do is to make a foundation, raise awareness and lobby for research. Hang in there.

 

[Likaloha]

I think people still have the outdated and very unfair notion that CFS is just being tired!!! No matter the research, and studies, and articles stating that it is sooooooo much more, and not tired at all, after 15 plus years of this crappy disease, I still hear people say to me "but I get really tired too!" , etc. If you tell people it is ME, or in my case also post-viral syndrome, it is too hard to really explain the gravity of the problem! Adding that I also have fibromyalgia does not help because people tell me about these wonder drugs they have seen commercials for like lyrica, etc, which I took years ago and did nothing!
Sorry, guess I just needed to vent! Thanks to all the wonderful people who give me a safe and understanding place to unload!

 

[Not dead yet!]

Yeah there's too much vague vagary. In the end, it's the after effects of an infection (fungal, bacterial, or viral) that never go away, or rarely do. I think it's a problem that in Africa it's "sleeping sickness" because calling it "African sleeping sickness" implies that you'd have to have been there to get it. This is probably some normal human immune reaction, which turns out badly in some cases.

We need a diagnosis and a treatment, even if it's preliminary. What about all that cytokine stuff? Surely we can do a trial of not severe patients and all the types of anti-inflammatories available? Do we even know which one answers the cytokine issues best?

 

[Carl#1]

Yeah there's too much vague vagary. In the end, it's the after effects of an infection (fungal, bacterial, or viral) that never go away, or rarely do. I think it's a problem that in Africa it's "sleeping sickness" because calling it "African sleeping sickness" implies that you'd have to have been there to get it. This is probably some normal human immune reaction, which turns out badly in some cases.

We need a diagnosis and a treatment, even if it's preliminary. What about all that cytokine stuff? Surely we can do a trial of not severe patients and all the types of anti-inflammatories available? Do we even know which one answers the cytokine issues best?

Cytokines are a very big part of the problem. That is caused by Increased Digestive Permeability which promotes all the immune system dysfunction. There is often nervous system degradation in certain areas which alters how the the immune system reacts and attacks.

Dampening down cytokines using anti inflammatories can help a lot. Boswellia to stop LipoPolySaccharide induced inflammation. Cordyceps which can help normalize cytokine levels and immune system function. There are others such as Green Tea EGCG maybe Beta Glucans. Anything which lowers inflammation should help.

Ultimately destroying the infection(s) in your stomach will end this. That is what I am attempting to do but other things are proving difficult. I have to get my Ultrasonic cleaner fixed and I am running out of time because the warranty expires at the end of this month. I have to get that picked up later on Monday otherwise the company will not be there to receive it. Therefore I have to go and get it done......

BTW CFS/Fibro has nothing to do with Viruses! Viruses are only a problem because of the resulting immune dysfunction. That is why treating them very rarely brings any lasting effect.

All this is why consuming Glutamine brings no improvement. It's all a lie based upon foolish and poorly thought out ideas.

 

[Not dead yet!]

BTW CFS/Fibro has nothing to do with Viruses! Viruses are only a problem because of the resulting immune dysfunction. That is why treating them very rarely brings any lasting effect.

All this is why consuming Glutamine brings no improvement. It's all a lie based upon foolish and poorly thought out ideas.

Huh? I was with you until this.

The current medical code for CFS (they don't call it ME at all) is that it's post viral syndrome. And Pridgen Protocol does work for some people. Though it's not a cure, it has made me feel more capable of doing daily tasks.

What does Glutamine have to do with it? Isn't Lysine the anti-viral amino acid? Sorry I haven't heard of that, it's so hard to track all the alternative options.

Turmeric doesn't seem to do anything for me when taken as a supplement. I can try boswellia. I'm scared to go off of Celebrex though, because they're stingy about prescribing it already. I like the idea of a specific anti inflammatory for Lipopolysaccharide issues, I'll have to look into it, thank you.

 

[Larry]

I always though we just need a HUGE celeb to openly say and show how debilitating ME or FMS can be.

Lady Gaga did that and nothing changed.

I mean I have a youtube with 700k Subs and it's my main job, I always though, reaching a certain number of subscribers (like a million) I could make a big difference. Or now since I studied a lot, I kinda know how to viralize a video if I really wanted to... But if not even the reach of Lady Gaga did, what would do?

Couple of things come to mind.

First of all, the population at large doesn't pay attention to a short girl unable to express her true self waking around in a fake meat suit. She only resonates with those who feel like she does. This is true for everything and everyone.

Secondly, The thing that she suffers from is not understood by those with a well honed intuition. A well honed intuition prevents one from being in a state of constant fight or flight and thus in a healthier state, so if you try to explain this to someone who has this ability, they might say something like, "yeah, so what, my life is hard too, but I deal with it". People respond favorable to those that suffer from things that do not trigger them....things they can't catch. Someone perceived as complaining about the very thing that they had to struggle to develop just makes people turn the other way.

I would suggest the thing you can do is reach out to recovered people and ask them what they think you should do. It was highly effective for me.