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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Anyone else feeling frustrated with the research efforts?

Davsey27

Davsey27

Senior Member
Messages
507
Hello everyone.I have been seeing alot of videos on youtube regarding different theories.Younger and brain inflammation,Davis, Navieux and metabolics.Lots of interesting theories and ideas but when it comes to treatment nothing.I heard a presentation by Ron Davis in 2017 saying we are getting closer and still not much to show for. They will tell you Ampligen under experimentation and other agents in clinical trials and lots of beautiful theories and ideas but still can't seem to help ME patients. Does anyone know what may be going on and why all of these presentations and conferences are not leading to treatments?

Thank You
 
W

Wishful

Senior Member
Messages
5,482
Location
Alberta
So far they haven't found the key to what's causing ME. Without that, finding a treatment has little chance of success. They're finding some biochemical changes common to some PWME, but so far none of those has led to an actual understanding of why they are occurring. Hopefully one (or more) of the things that they are finding out about ME will lead to finding something else that is common to all PWME.

Yes, I'm disappointed with the lack of progress. I thought they'd find the 'something in the blood' by now. I still think too much funding is going to looking for markers in the body, rather than in the brain.
 
K

keepontruckin

Senior Member
Messages
208
Ron Davis did a recent youtube within the last two weeks. He mentioned that his main focus now is on finding a cure and some genetic work. I think he is also focused at attracting more scientists to the field too. I wonder if that means he is less focused on looking for a treatment? I think that with the huge number of people with cfs, someone would have come across a treatment if it was available on the market for other purposes by now. But as research about medicine advances in many directions, I hope something will be found soon.
 
Davsey27

Davsey27

Senior Member
Messages
507
keepontruckin said:
Ron Davis did a recent youtube within the last two weeks. He mentioned that his main focus now is on finding a cure and some genetic work. I think he is also focused at attracting more scientists to the field too. I wonder if that means he is less focused on looking for a treatment? I think that with the huge number of people with cfs, someone would have come across a treatment if it was available on the market for other purposes by now. But as research about medicine advances in many directions, I hope something will be found soon.
Click to expand...

Let's hope so.There are many people who need help.If less energy was invested in status,fame and academic recognition and instead focusing on mandating doctors take ME seriously than I think this would be a step.in the right direction.Lets start by stripping doctors license to practice who say that it's not real and don't take patients seriously.

Thankfully there are some good docs out there but not enough for the new cases and people on here trying to find a good doc and not have to wait 6 months.

I think there is alot of good that could be done by helping creating.programs for ME patients to afford medications,supplements that some of these Phd people can push for instead of only catering to middle upper class.
 
B

borko2100

Senior Member
Messages
156
Yes for sure. The most frustrating part is all the dead ends that get pursued for years and eventually lead nowhere. I think researchers should be less trigger happy when pursuing new theories and hypotheses in order to avoid wasting time and resources away for nothing.
 
godlovesatrier

godlovesatrier

Senior Member
Messages
2,368
Location
United Kingdom
IThinkImTurningJapanese said:
But I'm so angry.

And none of our fucking emojis come close to expressing how I feel. :cautious:
Click to expand...

I'm not remotely negative about it. It's just we all have so much shit to deal with anyway. I think we all get such mixed emotions due to the disease. Anger. Anxiety. Depression. It's just dreadful. I just wish they would figure out the root cause.
 
valentinelynx

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
It's all about the lack of money for research. Without funds, it very difficult for research to get anywhere. Ron Davis just had all of his recent applications for grants to study ME/CFS rejected again by NIH. Without money he can't get the equipment or the employee time he needs to test theories. Same is true of any other researcher. Laboratory time is expensive.

There's also the problem of randomness in studies. Each researcher picks a little piece of the puzzle to study and does it without coordinating with others. At least here there's been some progress with OMF working to establish multiple Collaborative Research Centers around the world, in which the scientists do work together, thus avoiding the waste of resources that happens when researchers keep their results secret until publication (because if they don't, and the result becomes "common knowledge" it is no longer publishable! OMF have raised "over 24 million dollars" since 2012. That's peanuts in medical research. For example, Congress allocated 2.4 BILLION dollars to Alzheimer's Disease research for the year 2019. The current NIH budget for ME/CFS is something like 14 million dollars per year. This is truly pathetic.
 
W

Wishful

Senior Member
Messages
5,482
Location
Alberta
godlovesatrier said:
It's a bit depressing but I suspect if we don't get the same recognition as MS or cancer or motor neurons.
Click to expand...

One important bit of progress is that at least the research world accepts ME as a valid physiological disease. Without that, there wold probably be zero chance of getting government funding or even donations. Developing a reliable diagnostic test would help further, as would a reliable measurement of dysfunction, since ME is probably underestimated in numbers and severity. If they could provide some hard numbers showing that the prevalence is about the same as MS and the loss of ability to work or enjoy life was worse, it would be easier to demand similar funding. Given the disparity of funding, we can't expect the same level of results that we might read about for MS or cancer.

So, don't be frustrated just because the rate of progress (measured in available treatments) isn't the same as for some other diseases. Progress is being made towards getting recognition for more funding. There's also progress in new tools for research and a broader knowledge base. Imagine how slow ME research would have been 100 years ago. Hmmm, I'm sure ME existed 100 years ago, and we only recently proved that it's a real disease, so no need to imagine.
 
godlovesatrier

godlovesatrier

Senior Member
Messages
2,368
Location
United Kingdom
@IThinkImTurningJapanese haha it's tapping therapy. I was extremely dubious about it but it's part pyscholigical part physiological. It sort of stops the anxiety response, whilst reordering the mind to think about the issue differently. I find it stops my adrenaline response which means I am not just living on adrenaline. I suspect it only works for milder anxiety, but even if I tap for a few minutes it brings me down. What I notice is that after exertion my body usually goes into a cellular panic anyway, so EFT can stop that forcing it to relax and just be. Which won't sotp a crash, but it might shorten the duration.

As for our future prospects, I guess it depends how long you've been sick, if you've seen one suggestion of progress you've seen them all?
 
JES

JES

Senior Member
Messages
1,301
Davsey27 said:
Hello everyone.I have been seeing alot of videos on youtube regarding different theories.Younger and brain inflammation,Davis, Navieux and metabolics.Lots of interesting theories and ideas but when it comes to treatment nothing.I heard a presentation by Ron Davis in 2017 saying we are getting closer and still not much to show for. They will tell you Ampligen under experimentation and other agents in clinical trials and lots of beautiful theories and ideas but still can't seem to help ME patients. Does anyone know what may be going on and why all of these presentations and conferences are not leading to treatments?

Thank You
Click to expand...

Lots has happened since 2017, you should watch some of the later videos, actually there was one today where Ron Davis gave the latest status update and again explained lots of the problematic (link). Obviously COVID-19 is stopping all lab work at the moment, but that's not the only issue. There was little "organized" ME/CFS research going on before Ron Davis started his collaboration, basically the only organized attempts at writing papers and doing trials came from the psychiatry side, which unfortunately pretty much wasted 30 years of opportunity to solve this.

Davis' research has been going on full power since around 2016, so not even five years. Nobody comes up with an approved and finalized treatment in that time, even if they did everything correctly from day one. Amidst this COVID-19 emergency with millions thrown at finding treatments, doctors still have pretty much nothing today for treating COVID-19 and optimistically they are a year away from a vaccine, so it's not at all surprising to me that there's no actual treatment as of today for ME/CFS.

Research is always a marathon so I'm not concerned about things not being finalized, but one could argue some parts of the research could have gone quicker, that's a fair point. We are seeing two drug trials starting from OMF collaboration, kynurenine and mestinon, the second one which I'm not too excited about, but it's a start. Regarding finding the root cause of the disease and a biomarker, that part has been stalling a bit, we still don't have the metabolic trap validated and we don't know what exactly in the plasma is causing the signal in the nanoneedle. In today's video some of that problematic is discussed.
 
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Rufous McKinney

Rufous McKinney

Senior Member
Messages
12,772
godlovesatrier said:
@IThinkImTurningJapanese haha it's tapping therapy. I was extremely dubious about it but it's part pyscholigical part physiological. It sort of stops the anxiety response, whilst reordering the mind to think about the issue differently. I find it stops my adrenaline response which means I am not just living on adrenaline. I suspect it only works for milder anxiety, but even if I tap for a few minutes it brings me down. What I notice is that after exertion my body usually goes into a cellular panic anyway, so EFT can stop that forcing it to relax and just be. Which won't sotp a crash, but it might shorten the duration
Click to expand...

I've had some modest benefit from occasional EFT sessions. I've used it to reduce mild to moderate anxiety about some specific thing, usually physical stuff; and when I deploy the techniques, my anxiety levels are typically lessoned a fair amount.

While it may in fact work through the energy meridians and Qi points- what is also going on is its a physical distraction, and its very hard to do both things at the same time. It short circuits the anxious thought because your, say, physically counting backward, or blinking the eyes repeatedly, or tapping your chin while repeating a sentence.

This eye blinking thing is done in psychiatrist offices.

My bladder spasms stopped- driving thru San Francisco. I'm anxious, as I don't want to stop for a bathroom and we just stopped in Marin. I just want to get to the other side of this huge big city. So EFT thru San Fran (I was not driving). I've have done EFT while driving, works great. (that seems like long long ago, going on a trip).
 
L

lenora

Senior Member
Messages
4,694
I'm from a time long, long ago when we didn't have one researcher working on our non-existent illness. After all, we were the butt of jokes, no one listened and very, very few doctors knew anything about this illneses or, if they did, believed in it.

You're rich with researchers now, but as always with these things, it will take time...time that is precious to each of us. Our lives disappear while we're waiting I was quite young when this began, and now I'm 73. I wrongly assumed that after AIDS the govt. would help us...nope, never happened. I then thought that at the very least we would get the research being done on MS and other illnesses that work was being done on. No, that didn't happen either. But today you have every reason for hope and it's because of the researchers who do take it seriously. Funding won't come from the govt., so we have to raise our own funds, and that's hard to do when a population is seriously ill on the one hand, and money is tight for them on the other. Very few make big bucks and hand it over for research. Some do, and they do what they can with it.

Personally, I think it's unfair to blame the researchers for our situation. ME is a very difficult thing to not only understand, but make progress on. Our researchers need to know that we believe in them, because it's important...they're our gateway to solving this puzzle.

There are so many things that go into ME and so many symptoms for each of them. I used to doubt my own sanity constantly EVEN thought I was experiencing all of the side-effects of the illness. Today we have researchers who have been specially trained in working with ME. Years ago we didn't even one researcher, let alone a team of them. Please have some patience...and encouragement for these researchers.

And please, this above all, money is needed in order to hire as many researchers as possible. I doubt that anyone will be hosting a ball and money will be collected in large amounts. That means that we're responsible for finding our own cure....send in whatever you can afford. But do it, you're life hangs on it. Yours, Lenora.
 
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