Attitudes towards ME/CFS Researchers

[Whit]

MODERATION NOTE: THE FIRST 21 POSTS IN THIS THREAD WERE RELOCATED FROM 'Abilify- Stanford Clinic Patients'


We have many many brilliant minds working on ME/CFS now. It's not like it was 10 years ago or has been for decades. I think in general we should assume we are dumber than the researchers studying this illness. I'm not trying to attack or accuse anyone in particular, its' just that there is this very common way of thinking among ME/CFS patients that there are simple things researchers could do that would give us answers.

There are not. I'm sad to say.

What you think would be a very easy and revealing study is actually much more complicated in how it works or how it could be studied, or there simply is not enough money to do the study.

I know this because I hear Ron Davis talk about his research quite often and that's a luxury most ME/CFS patients don't have. I hear the behind the scenes frustrations and thoughts and ideas. If something is obvious enough for one of us to think of it, its very unlikely that the current generation of ME/CFS researchers haven't already thought of it.

That doesn't mean anyone has to "shut up" or stop questioning things or wondering about things or digging into the science or posing these questions. Its' probably good for us to ask these questions and wonder.

I'm merely suggesting that in 2022, we should have more faith in the people researching ME/CFS than we've had for the last 50 whatever years. And Im suggesting this for our own personal knowledge and mental health, not because I think we should say or express anything differently.

 

[lenora]

How true. Researchers have long worked on finding a solution for this illness. It's far more complex than most of us are aware, and an article or two in the paper does not make a proper solution. Until the researchers have answers, our doctors can do very little that's helpful....although meds and vitamins (and many know these things, but can't advertise their knowledge), are available today.

True, vitamins and supplements always were....but drugs? No, there was nothing say in the l980's. However, through research we have found some that work on most people. True, you'll have to suffer side-effects for a month or so, the first trial of something may not work, but a lot of them will help with many of the basics of the illness.

It is hard to find answers when you're starting at the very beginning...there are so many theories, and too many are far too easy. True, the answer may lie in one of them, but it certainly hasn't at this time.

Researchers are only doing their very best and the doctors treating us. Get mad at the lack of researcher funds if you're going to get upset with anything. Give funds yourselves (we have for years).

If we're going to fight back, let's do it the best way possible and not make the situation any worse. Yours, Lenora

 

[BrightCandle]

If medicine was working well for ME/CFS people would have tried LDN, Ablify and potentially a few different anti virals and antibiotics. Diagnostically doctors would have confirmed the metabolic issues via an organic acids test or various blood tests that will show the same pattern, looked for microclotting in the blood and treated with warfarin, tested for POTS and treated with the drugs available etc etc. Its not that there are no diagnostics and no treatments its that doctors aren't believing patients are really ill and denying them access to everything that could ease their suffering a bit.

Its one of those diseases which has so many biomarkers at this point its a question of just picking one of them, any of them to go with for now until a diagnostic based on the understanding of the disease is found. But the idea there are no tests that come back odd is just wrong as is the idea there are no treatments, all of that is just bad doctors.

 

[kewia]

But the idea there are no tests that come back odd is just wrong as is the idea there are no treatments, all of that is just bad doctors.

Their arrogance is one of the biggest stumbling blocks following the lack of funding and acceptance from Governments.

 

[leokitten]

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.

 

[Whit]

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.

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.

 

[JES]

Yeah, I have a feeling it's got all to do with budget almost. Validate the metabolic trap hypothesis? You need some expensive mass spectrometer that is loaned out and not available. Testing for all known pathogens? I think they got as far as DNA viruses, but RNA viruses and such require probably more expensive and experimental tests, which again cost more. The "something in the blood" factor and nanoneedle? Again I assume they cannot actually develop the tests needed in sufficient quantities to get much further on this. Oh and you also need to finance the researcher doing the work, who also left as there was no money granted for his project. Then you are left doing computer modeling, which is cheap, but how relevant are those models when human biology is still so poorly understood?

Drugs we have come across so far like Abilify were basically found out by accident. I think Ron's group is also working on looking at FDA approved compounds that could perhaps be used with regards to for example the metabolic trap hypothesis. It would then need some clinic involved and a lot of more money to do the clinical trial bit.

 

[Whit]

I think Ron's group is also working on looking at FDA approved compounds that could perhaps be used with regards to for example the metabolic trap hypothesis.

I can verify this is true.

 

[Whit]

I don't want to turn into the spokesperson for Ron Davis, that's not a job I want. I just am able to clarify some things sometimes because I'm around him so much.

 

[Strawberry]

I'm merely suggesting that in 2022, we should have more faith in the people researching ME/CFS than we've had for the last 50 whatever years.

I have tons of faith in the researchers. All around the world there is amazing research being done.

It’s government and run of the mill doctors that are holding us back. THAT is what I’m sick and tired of. (Yeah intentional pun…)

 

[leokitten]

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.

I’m sorry @Whit maybe I sounded a bit negative, but I actually think based on what you wrote we are pretty much in agreement. I was very explicit to say it's my opinion why I cannot watch the research video updates anymore.

The main reason is, and what I would say to people, that please go back and watch their videos throughout the years, they keep say in 2, or 3, or 5 years we will have something, that time passes and the needle doesn't move forward at all. I personally believe they need to stop doing that. I know for some people they might need this (false) hope, but for others like me it does the reverse, it makes me much more disappointed and hopeless when the time goes by and realistically they are no where closer to knowing anything than they were when Ron started almost 10 years ago. You might say oh but they are doing this and that and they learned this little thing, but seriously and realistically they do not know anything more of consequence and actionable importance than they did 10 years ago.

 

[Rvanson]

The ONLY reason that the medical profession is only now interested in ME/CFS is due to the
effects of the COVID-19 patients. Who have symptoms similar to ours, but not as extreme.

THAT is the only reason they won't find a cure for either one, but it's "all about the money".
And their pretending sympathy for us, now that even doctors have LH post-Covid syndrome.

I've seen young people with extreme ME/CFS, suffering horribly. Who will take care of them when their parents die?

 

[Marylib]

If you follow @Janet Dafoe on twitter - you learn alot. For example, I was not aware of the difficulties inherent in holding open conferences. These guys need to brainstorm without worrying about publishing and patent law. You can't do that at an open conference. So yeah, we need to support Ron. He made it very clear that he doesn't care if it's him who can fix it. Warren Tate doesn't care who fixes it. Warren always speaks very highly of Ron and with a heart felt sympathy and appreciation. The good guys are collaborators. Peace and love, everyone!

 

[Marylib]

True @Rvanson . Who will take care of them? I'm old so if I drop dead it won't matter but people need other people to survive. As for Long Covid - well, the suffering is immense there too. The answers lie in collaboration and in not reinventing the wheel, in my opinion. But - we can't control the vagaries of NIH and CDC and Tony Fauci, etc. Bureaucrats are bureaucrats. They hold onto money and dole it out as instructed to do so by their own boss. Creative thinking is not their strong suit. Creative people would go insane in a job like that.

 

[Whit]

but seriously and realistically they do not know anything more of consequence and actionable importance than they did 10 years ago.

This is flat out false. We are way ahead of where we were 10 years ago, I hear it everyday, they know all kinds of things, they are piecing things together and building a map of the cause of ME/CFS. Right now all of the pieces are starting to fit together into one theory which is extremely exciting.

Please, you can have your opinions but don't spread negativity. It's not right to be spreading this in a community that is barely holding onto hope as it is.

There is so much to be hopeful for right now.

 

[hmnr asg]

Please, you can have your opinions but if you don't know what you're talking about don't spread negativity.

Hey Whit, love you and I love Ron Davis, but I think you are being unfair here.

Given that this is an open forum and people can express their opinion, we dont get to tell them not to speak their mind because it might seem too negative. We are all suffering from a debilitating and incurable illness, how can you blame any of us for being negative?

In fact, I agree with everything @leokitten said word by word. I think many of the people here are growing wearing of so many promises that have not materialized into anything substantial. Being positive is one thing, but deluding ourselves is another. I have absolutely no doubt that Ron Davis is doing everything he can and more to help us. And I will not stop donating the little money that I have to OMF. But be real, none of this progress seems to have really hit the bull's eye.

Ron Davis is moving the needle but science moves slowly, VERY slowly, and trying to make it seem otherwise is unfair to the patients. I donate to OMF not because I think they will find a cure for us, but with the hopes that maybe the next generation of CFS patients will be farther ahead.

@leokitten is saying what many of us are thinking and feeling.

 

[hapl808]

Please, you can have your opinions but if you don't know what you're talking about don't spread negativity. You don't know what you're talking about here and it's not right to be spreading this in a community that is barely holding onto hope as it is.

First of all, this is an open forum and people can express their opinion, we dont get to tell them not to speak their mind because it might seem too negative. We are all suffering from a debilitating and incurable illness, how can you blame any of us for being negative?

I think this sums things up.

Everyone hugely appreciates the work Ron Davis and you and others are doing - both for research and just pure community visibility.

At the same time, this is sometimes a place for people to vent. Often it's the only place many have to vent where people will truly understand the depths of despair and helplessness.

You can experience despair and have hope. And we all experience that differently, of course. There's no right way to experience either despair or hope.

I'm probably just rambling in the middle of the night, but I think it's important not to try to enforce positivity or upbeat messaging. I personally lean more toward stoicism and always have, but again - to each their own.

At the same time, I hope Ron Davis and others realize that the internet is a cruel mistress - otherwise it's easy for a handful of mild (or constructive) criticism to drown out millions who are rooting for your success.

Anyways, frustration like hope can come in waves. I'm a bit cynical by nature, so of course I notice that the five year timeline of a cure has come and gone many times in my life. At 4am do I expect a cure or adequate treatment within five years? Nope, but damn I hope I'm wrong.

And at the same time, an awful pandemic has brought the only real hope I have. I don't think people would've really recognized the validity of post viral syndromes in my lifetime if not for Covid, so I'm hopeful that actionable research will come of it.

But I'm certainly impatient and unimpressed with our turgid rollout of the long Covid funding and the seeming lack of support and acclaim for legacy ME/CFS research, and I email Ms Whittemore regularly to let her know.

 

[lenora]

OK.....if doctors are such bad guys, then why have so many drugs been tried since the early 1980's? I'm not in a good mood at present, I'd be the first to admit it, but my dear, dear neurologist of almost 40 years unexpectedly died on Friday.

This "uncaring" doctor saw me through horrible bouts of illness and yes, we were both guinea pigs insofar as meds are concerned. I'm not the only patient who received this treatment....he had the worst of the worst cases and we all relied on and cared deeply for him.

So, yes, these doctors do exist.

Thanks to uncaring men like him (and there have been plenty of others), we were able to start the beginning of something like Forums (called different names at that time). There was no computer.....so it meant tremendous reading, trying to understand what the problems were and offering people the best care available. I, personally, sent newsletters (and yes, it is old fashioned by today's standards, but you work with what you can), doctors had input and as much as possible that could be done was actually done.

How about a round of applause for the many researchers and helpful doctors who actually worry about their patients and work themselves to death? Yours, Lenora

 

[Marylib]

@hapl808 Yep. The hope/despair continuum. Expectation is in there somewhere too. Sometimes the despair seems like negativity. Sometimes positivity can be referred to as toxic. We each deal with our own situation in our own way with whatever particular perspective we have at any given time. Being really sick means there can be a constant battle just to summon up the will to live one more day. And I think that sometimes we also tend to bite the hand that feeds us. We're all just human beings so... Personally, I gave up expecting to be healthy again a long time ago and maybe I will instead get a nice surprise.

 

[leokitten]

OK.....if doctors are such bad guys, then why have so many drugs been tried since the early 1980's? I'm not in a good mood at present, I'd be the first to admit it, but my dear, dear neurologist of almost 40 years unexpectedly died on Friday.

This "uncaring" doctor saw me through horrible bouts of illness and yes, we were both guinea pigs insofar as meds are concerned. I'm not the only patient who received this treatment....he had the worst of the worst cases and we all relied on and cared deeply for him.

So, yes, these doctors do exist.

Thanks to uncaring men like him (and there have been plenty of others), we were able to start the beginning of something like Forums (called different names at that time). There was no computer.....so it meant tremendous reading, trying to understand what the problems were and offering people the best care available. I, personally, sent newsletters (and yes, it is old fashioned by today's standards, but you work with what you can), doctors had input and as much as possible that could be done was actually done.

How about a round of applause for the many researchers and helpful doctors who actually worry about their patients and work themselves to death? Yours, Lenora

ME doctors and the science/research community are quite different things and have not generally aligning incentives and motives. Absolutely I will applaud all ME doctors, including my own, I wouldn’t be where I am today without her doing everything she can to help.

And also don’t want to misconstrued, not saying ME researchers don’t deserve applause either, it’s just I think I am not being too radical when giving an objective note/critique that some of the seemlingly erratic decisions and directions are not making sense to me and hopefully we patients can say such things on this open forum without feeling cancelled.