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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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Attitudes towards ME/CFS Researchers

Janet Dafoe

Board Member
Messages
867
I agree with the sentiment that even though there are smart people working on the problem, they never seem to really get anywhere to build on hypotheses. Like someone else said you can’t just do a couple discovery papers or initial hypothesis testing papers and then see some interesting biological signal and write up in the discussion “yada yada must follow up with more mechanistic experiments to confirm what we are seeing…” AND THEN BAM… THEY DON’T DO IT and nobody else really does either. Then they move to another idea and you are like, wait, things looked very promising but we never kept looking further at the previous idea? For once, let’s hammer out in a much more systematic way some damn hypotheses, and say ok follow up studies showing likely not worth it or yes let’s keep going.

So the way it’s being done currently you cannot reliably build on the evidence base to more strongly determine if a path is worth pursuing or likely a dead end. It seems like all the ME hypotheses are half baked unfinished works in the evidence base. The scientific community will never get anywhere this way, the scientific method depends on a building up of confirming or refuting experimental work, to slowly and more reliably weed out paths and strengthen interest and work (and grant money) in more promising ones.

Where is this happening in ME science? Sorry I’ve been out of touch for a while, but still seems like there’s so much that is left out to dry never finished or at least never more reliably confirmed that it’s probably not X or Y hypothesis. I cannot even watch Ron Davis or similar videos anymore, nothing to do with him or anyone they are likely wonderful people, but I used to watch everything and nothing ever goes anywhere before they move on to another idea without scratching the surface on the previous one, so you eventually get fed up and I’ve gotten a jaded, “boy who cried wolf” feeling now. So I’m just expecting for the patient community to yell from the hilltops when something really gets somewhere, because otherwise I see no movement and even when I don’t pay strong attention for a year or more and come back nothing’s changed.

I’m not expecting a cure, puzzle solved, or instant treatment, but what we should all put our feet down and expect is that the evidence base is constructively evolving the way it does in other disease research. There is no other way, it’s the only way in science to find some clearer direction. And this issue in ME research isn’t completely blamed on the lack of money, ME researchers are also choosing to do things in such a broken and erratic way.
Did you watch the 5 video updates I recently made? If you don’t watch them then you’re not gonna know what’s being followed up on are you? Ron actually really knows how to do science. He knows how to use the money the most efficiently and follow up on the most promising things. He is very accomplished and successful scientist and he knows what he’s doing. I think posts like this have a lot more to do with how frustrating it is to wait. Science is slow it goes back-and-forth. This is the process. And it takes money. A lot of it.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
Did you watch the 5 video updates I recently made? If you don’t watch them then you’re not gonna know what’s being followed up on are you? Ron actually really knows how to do science. He knows how to use the money the most efficiently and follow up on the most promising things. He is very accomplished and successful scientist and he knows what he’s doing. I think posts like this have a lot more to do with how frustrating it is to wait. Science is slow it goes back-and-forth. This is the process. And it takes money. A lot of it.

I want to make clear that I agree with what you are saying here and it wasn’t what I was most concerned about, I’m a scientist myself, in cancer research at NIH until not long ago, and was able to work much more before ME starting slowly robbing me of that ability over these last years.

My complaint is that no one should say that they really think we will see some answers in X years, or any prediction, at this stage. Not even the best scientists on Earth would try and make any such prediction with how little we know right now about ME.

Science takes an extremely long time, and is a winding road full of dead ends and only some promising directions, almost always requiring many very well funded labs building on the evidence base by providing independent evidence further confirming previous hypotheses or refuting them. Then through creative destruction, dead end paths are slowly removed and promising paths strengthened until we get to some real progress.

So unless we are incredibly lucky, with a lucky breakthough, which might happen with Long COVID, we won’t see anything major that could help us for a time on the order of decades. I think a lot of ppl in the ME community and on forums confuse lots of great brainstorming ideas and very, very early hypothesis tests as significant progress.

So from my experience, typically when you are at this stage in understanding, and level of scientific output, answers are decades off. We can be hopeful but must tell people the realistic facts that things are way more likely than not a long way off. It’s been that way historically with other diseases that appear to be as complex and invisible-looking as ME, even way better funded with bigger research communities.

If the biological basis of ME is rooted in the lower brain and brainstem, where the initial trigger and subsequent chronic immune activation caused some kind of dysfunction in the autonomic nervous system (local autoantibodies against receptors or neurotransmitters, inflammation, brain cell dysfunction, etc), which can explain all the symptoms of this illness, it will be hard to show this only looking at humans.

If the biological basis is cellular metabolic dysfunction caused by some kind of immune dysfunction and both exist outside of the brain, which can also explain ME symptoms, I think we might have more chance to find some answers without needing a Hail Mary

But if it’s fundamentally rooted in the brain, which I would put my betting money on now, then without an ME animal model it will become really hard to show this. I hope that some groups at least in Long COVID are trying to develop a PVFS animal model, because that would be an incredible step.

EDIT: if the patient community or others ask about timelines that the scientific community is totally honest with them about how long a way off actionable understanding of this illness really is. I’m not saying that scientists should be telling patients this unsolicited, but if asked don’t be unrealistic
 
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Rvanson

Senior Member
Messages
312
Location
USA
I will say it again. We ALREADY KNOW that Ampligen works for 70 percent of ME/CFS patients.
We spend up to 12 k per person per month with HIV AIDS. Why are we not using Ampligen for ME/CFS again?
 

Marylib

Senior Member
Messages
1,155
I want to make clear that I agree with what you are saying here and it wasn’t what I was most concerned about, I’m a scientist myself, in cancer research at NIH until not long ago, and was able to work much more before ME starting slowly robbing me of that ability over these last years.

My complaint is that no one should say that they really think we will see some answers in X years, or any prediction, at this stage. Not even the best scientists on Earth would try and make any such prediction with how little we know right now about ME.

Science takes an extremely long time, and is a winding road full of dead ends and only some promising directions, almost always requiring many very well funded labs building on the evidence base by providing independent evidence further confirming previous hypotheses or refuting them. Then through creative destruction, dead end paths are slowly removed and promising paths strengthened until we get to some real progress.

So unless we are incredibly lucky, with a lucky breakthough, which might happen with Long COVID, we won’t see anything major that could help us for a time on the order of decades. I think a lot of ppl in the ME community and on forums confuse lots of great brainstorming ideas and very, very early hypothesis tests as significant progress.

So from my experience, typically when you are at this stage in understanding, and level of scientific output, answers are decades off. We can be hopeful but must tell people the realistic facts that things are way more likely than not a long way off. It’s been that way historically with other diseases that appear to be as complex and invisible-looking as ME, even way better funded with bigger research communities.

If the biological basis of ME is rooted in the lower brain and brainstem, where the initial trigger and subsequent chronic immune activation caused some kind of dysfunction in the autonomic nervous system (local autoantibodies against receptors or neurotransmitters, inflammation, brain cell dysfunction, etc), which can explain all the symptoms of this illness, it will be hard to show this only looking at humans.

If the biological basis is cellular metabolic dysfunction caused by some kind of immune dysfunction and both exist outside of the brain, which can also explain ME symptoms, I think we might have more chance to find some answers without needing a Hail Mary

But if it’s fundamentally rooted in the brain, which I would put my betting money on now, then without an ME animal model it will become really hard to show this. I hope that some groups at least in Long COVID are trying to develop a PVFS animal model, because that would be an incredible step.

I don't really care which body part it is rooted in. It's all connected. And I appreciate your point, but I don't need someone to tell me to keep my expectations realistic. Daily life for the last 30 years does that just fine on its own. Just find a target and throw something at it. If it works for only a few people without messing them up too bad, then hallelujah.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
I don't really care which body part it is rooted in. It's all connected. And I appreciate your point, but I don't need someone to tell me to keep my expectations realistic. Daily life for the last 30 years does that just fine on its own. Just find a target and throw something at it. If it works for only a few people without messing them up too bad, then hallelujah.

I wasn’t really trying to say that at first, its warping my words in a way, my reaction and posts have fundamentally been in response to scientists giving unrealistic timelines and expectations. What I’ve been saying is I want them not to do that.

Im sorry that I had to write more to say about being realistic, but that’s what happens here you have to spend multiple posts repeating yourself or making the point and things veer into a direction you didn’t even want or intend and then ppl take things out of context or don’t look at all the posts and say what is this user fundamentally talking about. I just want scientists to not be unrealistic to the patient community about how much time this is going to take.
 

Rufous McKinney

Senior Member
Messages
13,249
then ppl take things out of context or don’t look at all the posts and say what is this user fundamentally talking about.

doncha love human human interaction! Put on a seat belt and safety harness.

The AIDes folks got some help on something infectious, affecting the immune system.. Maybe it won't take decades to at least find something that helps us manage it better.

THe latest long covid research announcement was very optimist.
 

Zahr82

Senior Member
Messages
105
I want to make clear that I agree with what you are saying here and it wasn’t what I was most concerned about, I’m a scientist myself, in cancer research at NIH until not long ago, and was able to work much more before ME starting slowly robbing me of that ability over these last years.

My complaint is that no one should say that they really think we will see some answers in X years, or any prediction, at this stage. Not even the best scientists on Earth would try and make any such prediction with how little we know right now about ME.

Science takes an extremely long time, and is a winding road full of dead ends and only some promising directions, almost always requiring many very well funded labs building on the evidence base by providing independent evidence further confirming previous hypotheses or refuting them. Then through creative destruction, dead end paths are slowly removed and promising paths strengthened until we get to some real progress.

So unless we are incredibly lucky, with a lucky breakthough, which might happen with Long COVID, we won’t see anything major that could help us for a time on the order of decades. I think a lot of ppl in the ME community and on forums confuse lots of great brainstorming ideas and very, very early hypothesis tests as significant progress.

So from my experience, typically when you are at this stage in understanding, and level of scientific output, answers are decades off. We can be hopeful but must tell people the realistic facts that things are way more likely than not a long way off. It’s been that way historically with other diseases that appear to be as complex and invisible-looking as ME, even way better funded with bigger research communities.

If the biological basis of ME is rooted in the lower brain and brainstem, where the initial trigger and subsequent chronic immune activation caused some kind of dysfunction in the autonomic nervous system (local autoantibodies against receptors or neurotransmitters, inflammation, brain cell dysfunction, etc), which can explain all the symptoms of this illness, it will be hard to show this only looking at humans.

If the biological basis is cellular metabolic dysfunction caused by some kind of immune dysfunction and both exist outside of the brain, which can also explain ME symptoms, I think we might have more chance to find some answers without needing a Hail Mary

But if it’s fundamentally rooted in the brain, which I would put my betting money on now, then without an ME animal model it will become really hard to show this. I hope that some groups at least in Long COVID are trying to develop a PVFS animal model, because that would be an incredible step.

EDIT: if the patient community or others ask about timelines that the scientific community is totally honest with them about how long a way off actionable understanding of this illness really is. I’m not saying that scientists should be telling patients this unsolicited, but if asked don’t be unrealistic
I get what you're saying, but you say"" historically,
its always been this way "". But hasn't science evolved since that history youre talking about has gone. Dont we have more modern equipment, Nd knowledge, ways to gather data, than we did before? . I was under the impression that as technology changes, so does the speed of scientific progress. Please correct me if I'm wrong
 

Murph

:)
Messages
1,799
What has lifted my optimism pretty dramatically is the flood of long covid research.

While it's kind of lovely and cosy to know every researcher, many by their first name - Ron, Nancy, Bhupesh, Olav, Lenny, Carmen, etc! - it'd be way more awesome to have a situation where the idea of reading every new paper that comes out was risible, there were more conferences than a person could possibly attend, and the field was so busy that researchers struggled to carve out a tiny tiny piece they can call their own. That's the situation we're coming into.

Yes, there's been timelines in the past that weren't met, promises of progress that didn't happen. But it's not because researchers are bad people, just because they are optimists, progress is hard, and funding was low. I reckon the ratio of progress to funding has been amazing. With the new, neatly defined long covid cohorts coming in, plus more funding (and continued data-sharing/collaboration) the whole field will move far faster. :)
 

Andryr

Senior Member
Messages
139
Location
Ukraine
Dont we have more modern equipment, Nd knowledge, ways to gather data, than we did before? . I was under the impression that as technology changes, so does the speed of scientific progress.
If researchers have no funds they will not be able to use the modern equipment or labs.
Low prevalence -> Wrong perception -> Low awareness -> Low priority -> Lack of funds
Some links may be wrong but you get the idea.
 

Rvanson

Senior Member
Messages
312
Location
USA
If researchers have no funds they will not be able to use the modern equipment or labs.
Low prevalence -> Wrong perception -> Low awareness -> Low priority -> Lack of funds
Some links may be wrong but you get the idea.

I am a layman. But that said, we ALREADY have a medication that would help lots of ME/CFS
patients going on 30 years now. Ampligen would help 50 to 70 percent of us, yet it's unavailable for most all of us.

Seems pretty damn unfair to me, so I no longer pay any taxes and I do it legally as well, to boot. :)
 
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Zahr82

Senior Member
Messages
105
I am a layman. But that said, we ALREADY have a medication that would help lots of ME/CFS
patients going on 30 years now. Ampligen would help 50 to 70 percent of us, yet it's unavailable for most all of us.

Seems pretty damn unfair to me, so I no longer pay any taxes and I do it legally as well, to boot. :)
Good man
 

BrightCandle

Senior Member
Messages
1,147
I am a layman. But that said, we ALREADY have a medication that would help lots of ME/CFS
patients going on 30 years now. Ampligen would help 50 to 70 percent of us, yet it's unavailable for most all of us.

LDN and Ampligen have both shown benefits for some ME patients. I think quite a lot of the antivirals have also passed the level of interesting where they may help something like 1 in 5 patients as well. Many of us can't afford to privately fund seeing if any of this helps but the limitations put on us buying and trying these drugs does strike me as a weird mix of protecting us from ourselves as a vulnerable individual combined with stopping our informed free will to potentially free us from a debilitating disease. I am not sure its quite the ethical weigh up they think it is, for the Doctor its easier to say no because their no consequences for wrong diagnosis and not treating. To the patient however its devastating.

Just an aside on a similar grain of ethics in medicine. I started pulling the various purchases together to test for microclots in my own blood. Last year I did the Joishua liesk level of unprocessed slide showing the platelet clumping but I am going to UV light and centrifuge and going about testing my own blood and then with some certainly start the South African anticoagulant protocol that is in trial. The test will ensure I know I am starting and treating I am sure I have and also tell me when to stop. The drugs of which are going to be the usual nightmare to get hold of. But the ethical question is should I even offer to test PR UK residents blood for them? At that point I am going to have the means to do it, if I ask for donations potentially it spreads the cost! Ethically it feels weird, exploitative but also I bet there are people who would want the results of that test and if a commercial company offered it right now they would buy it. Its available in other countries already, its not a complex procedure, I am certainly not going to lie about it being a test done on my kitchen table.

Medical ethics is hard and in ME the ethics are far more problematic because most of the treatments are actual harmful quackary. I don't even know if Ron Davis' and his 37 drugs that might unlock the Trypotphan trap is the right ethical call in minimising harm or not, I don't know what minimum harm is in this disease. I think the ethics around ME/CFS are messed up and they hurt hope and lack of hope causes suicides.
 

lenora

Senior Member
Messages
4,913
I want to make clear that I agree with what you are saying here and it wasn’t what I was most concerned about, I’m a scientist myself, in cancer research at NIH until not long ago, and was able to work much more before ME starting slowly robbing me of that ability over these last years.

My complaint is that no one should say that they really think we will see some answers in X years, or any prediction, at this stage. Not even the best scientists on Earth would try and make any such prediction with how little we know right now about ME.

Science takes an extremely long time, and is a winding road full of dead ends and only some promising directions, almost always requiring many very well funded labs building on the evidence base by providing independent evidence further confirming previous hypotheses or refuting them. Then through creative destruction, dead end paths are slowly removed and promising paths strengthened until we get to some real progress.

So unless we are incredibly lucky, with a lucky breakthough, which might happen with Long COVID, we won’t see anything major that could help us for a time on the order of decades. I think a lot of ppl in the ME community and on forums confuse lots of great brainstorming ideas and very, very early hypothesis tests as significant progress.

So from my experience, typically when you are at this stage in understanding, and level of scientific output, answers are decades off. We can be hopeful but must tell people the realistic facts that things are way more likely than not a long way off. It’s been that way historically with other diseases that appear to be as complex and invisible-looking as ME, even way better funded with bigger research communities.

If the biological basis of ME is rooted in the lower brain and brainstem, where the initial trigger and subsequent chronic immune activation caused some kind of dysfunction in the autonomic nervous system (local autoantibodies against receptors or neurotransmitters, inflammation, brain cell dysfunction, etc), which can explain all the symptoms of this illness, it will be hard to show this only looking at humans.

If the biological basis is cellular metabolic dysfunction caused by some kind of immune dysfunction and both exist outside of the brain, which can also explain ME symptoms, I think we might have more chance to find some answers without needing a Hail Mary

But if it’s fundamentally rooted in the brain, which I would put my betting money on now, then without an ME animal model it will become really hard to show this. I hope that some groups at least in Long COVID are trying to develop a PVFS animal model, because that would be an incredible step.

EDIT: if the patient community or others ask about timelines that the scientific community is totally honest with them about how long a way off actionable understanding of this illness really is. I’m not saying that scientists should be telling patients this unsolicited, but if asked don’t be unrealistic


I just wanted to add that many years ago, it was found that King Charles Spaniels have the same type of brain defect as that found in humans who may/may not suffer from ME.

The outcome: Money poured in for the diagnosis and treatment of these animals. Why weren't the exact same funds given for people who are also suffering?

Remember that humans were the ones who forced the spaniels to have that "endearing" look. Now I feel for those spaniels and can only hope they've found good homes where they are treated well and lovingly.

Still, have they stopped breeding them? It's doubtful to say the least.

Insofar as Research goes....at the rate we're heading we're lucky to have any at all. For years I've seen an improvement, but it takes tremendous time, money and effort. Studies have to be replicated a few times over....this is time and cost consuming.

New drugs come out but I've heard a LOT of complaints about them....as if we're being poisoned intentionally. If it doesn't work for you, it doesn't. But one week is not going to tell the story. Of course there will be side effects, expect them. No one has the answer, nor does any form of alternative medicine. I know b/c I've tried everything and carefully listen to the stories of others. Yes, get frustrated....but please don't let the researchers and helpful doctors bear the brunt of your frustration. Right now we're mired in trying to be our own doctors...is this what we want to leave for the next generation? Yours, Lenora
 
Messages
24
I'm sorry but I disagree with this. Your perception is because of all the things you just don't know because Ron can't talk about everything. He IS following every avenue as his budget allows, nothing that looks promising is just left. He talks all the time about the problems with researchers doing research just to publish papers instead of doing research to try to help patients. He wants to find answers that will help patients and isn't concerned with publishing papers or even credit.

If Ron stopped working on something it's because they disproved it or because it is on hold due to lack of finances.

I really wish people would have more faith in Ron. He needs it.
What about the theory by some researchers, I think in New Zealand, et. al, that the root of this disease lies within the brain and the bodily systems’ dysfunction is just a downstream effect? This doesn’t seem to be Ron’s area of expertise, am I correct?
 

Rufous McKinney

Senior Member
Messages
13,249
My complaint is that no one should say that they really think we will see some answers in X years, or any prediction, at this stage.

maybe its just not smart to buy into predictions or declarations of possible timelines. IF I see remarks like that, I generally don't give them much weight.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,996
I don't think faith in researchers is the issue.
We are all doing the best we can, and citizen science has a track record of yielding successes.

If we were talking about taking resources away from researchers and redirecting it than thats one thing but nobody has proposed that idea. Heck i was going to submit OMF for a long shot 25K reward contest but the Canadian office is not in my province so is ineligible :(

We all hope someone comes through for us, either researchers or a novice who discovers something useful.
 
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