Concrete demands for the Open Medicine Foundation

Alvin2

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I cannot blame ron for caring about his son above everything else, but he is running a research org that is not doing projects called "the save whitney project" or the "end whitney's specific subset project", but "the end ME/CFS project".
Biting the hand that feeds you is not productive.
Dr Davis has investigated many avenues from mold to CCI to autoimmunity and more. He doesn't give up on anything but you seem to think you have found the magic bullet and its your mission to convince everyone else that you are right and they are wrong.
This is one stubborn disease that seems to reject everything you throw at it, simplistic theories that have been investigated to death yet are still not dismissed but being badgered about it is not going to get us anywhere.
I get that you are frustrated, we all are. Not a single one of us doesn't want a cure yesterday. But as you say anyone who tells you what you don't want to hear increases your resolve not to listen to anybody. Thats your prerogative but its unproductive.
Little of what you are saying has not been looked into already. We can go in circles for eternity but why waste our energy doing so?
 
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Our lived experience is important of course, but t's just not the same thing as having a PhD in some field that can help us. I can no more research potential cures than I can land a crashing jumbo jet even though I have flown on a plane many times, and know just how that feels, including some very scary turbulence.
im not aware of Jeff Wood having a PhD, but he did more to advance the theory of structural issues, and practically pioneered it; than any scientist or doctor in the ME/CFS field. I'm not in favor of arguments based on credentialism. We have forums like this and Science for ME, not just to vent , but to figure out this problem together. If you think that is totally useless, thats fine, but while I may be alone in my opinion of the OMF (Here--in the environmental illness world there are many who share it), I'm pretty sure I'm not alone here in thinking that patients can figure out scientific theories and look at evidence.

Look, I'm preparing for a cci surgery, and there are so many debates and controversies, that there was no way I could just go to a surgeon and trust that "expert" to figure it out for me. I needed to look at every paper there was on imaging and standard diagnostic metrics on mri or fluoroscopy before I was able to even know this was a valuable surgery I needed and not just a quack fad procedure. if I simply listened to the doctor, I'd have to just flip a coin, bc different doctors say different things, so id have to do a coin flip to see which one to listen to. but instead, i researched, which is more work than a coin flip, but probably a sounder method. this is not necessarily terribly complex stuff, but I read all of the studies by the group of neurosurgeons that created a new standard group of metrics for deciding the diagnosis of craniocervical instability and whether to operate. without reading these studies, and searching for ones that had healthy controls' measurements (of which there were some but shockingly few), how would I have known that these new standard metrics (which some doctors disagree with and dont use) by which I was diagnosed, were even valid? unfortunately, we have to do our own research--it tires me a lot and I don't enjoy it that much. I wanted to be a musician, not a scientist. And Ive never claimed to know more than someone who has a phd, but I think the idea that all we can offer is discussion of "lived experience", and that we cant contribute to research of cures, is extremely harmful. there is a small subforum here for emotional support, and thats extremely important, but again, its not the only reason we're here, many patients have used this forum to advance understanding of the scientific theories behind me/cfs etiology.

I have no problem with anyone saying "environmental aspects have nothing to do with ME/CFS" or totally discounting my theories. But what you're saying goes beyond that. You are diminishing the abilities and agencies of patients. Patients have contributed to research in more ways than detailing their symptoms and "lived experience". They have read the literature thoroughly and constructed scientific theories of the etiology of this disease based on the existing literature. They have done experiments, drug trials or trials of other things, often n=1, but often in greater numbers than that. I have seen some incredible work on this forum--inspiring work. even when its on theories that i disagree with , I don't shoot it down b/c the sheer talent and will people are applying to this work is so incredible. one example I remember in particular is @Hip doing the pharmacokinetic calculations to find out what the bioavailable dose of a given antipurinergic drug was, for a patient that was thoroughly testing robert naviaux's theory of purinergic antagonism. This was incredible teamwork. that patient, a Polish man who I don't recall his name, had done lots of theoretical work building on naviaux's and the omfs ideas, but taking them way further. part of the hypothesis to be tested was that p2x antagonists (iirc, it was awhile ago) could put ME/CFS into remission. So he came up with that hypothesis and found all of the available p2x antagonists, but @Hip was the one who did the actual, complex pharmacokinetic calculations to find out what was the lowest dose that each one was active at, but also what the human LD50 would be, so that this person could figure out their dose. and so, this theory was tested. far faster than naviaux could, with waiting years for fda approval and/or funding for a simple drug trial.
thats just one example. but it inspired me a lot. It inspired me to research this disease myself, because i realized i couldnt wait for the science, and that even the best me/cfs doctors couldnt save me with current knowledge. but this was also a positive example that taught me that science is a process that anyone can do, rather than an object that one attains with credentials.

really, thats the last word i have on the subject. It doesnt really bother me when people disagree with me about the OMF, or environmental toxins.

It does bother me a lot when people say that people with this disease that don't have PhDs simply cannot contribute anything meaningful to the research. I think this is not only deeply hurtful, but untrue.
I'm actually shocked to hear that from someone on this forum.

It's not only about cognitive capacity. It's also about motivations, and skin in the game, and also regulatory things that slow down formal scientific process, so that patients trying things on their own can be faster. Jen Brea isn't just a great filmmaker. She's someone who figured out her own illness, and created scientific theories based on what she found. Yes, she's very well formally educated, but not in science. She didnt wait for the OMF or naviaux or david kaufman, or maureen hanson/cornell to cure her. She did get "cured" by a doctor, or team of doctors, but she led them. Its not like the doctor who operated on her thought it would put her ME/CFS into remission, and yet she knew of that connection bc of patients experimenting and theorizing. same for jeff wood. similar stories for Lisa Petrison or Erik Johnson, or Karen Dean, or many others i know. Now, am I saying that formal scientific research is useless bc patients have got this locked down? No, emphatically. We absolutely need formal scientific research, we need NIH funding, we need more of both. But as to the idea that patients cannot figure out a cure, that they cant understand the theory and the evidence, I think this has deep potential to harm people, who may already feel disempowered, and its just untrue. I implore you to reconsider.

This is not to toot my own horn, I'm not the smartest nor best patient researcher here, not by a long shot. I would probably put @Hip up there, or maybe Jen Brea, or Jeff Wood, or the polish patient-researcher i was speaking of earlier, who Hip may know (i forget his handle). Of course, sometimes the smartest person isnt the one who makes the most important discovery, sometimes its about luck, or lack of cognitive biases that more educated people have, or something like that.

I think the chance that any individual patient has to figure out this disease by researching on their own is extremely low. The chance that we can figure it out as a patient community researching together is also low, if not as low. The chance for an institution like the OMF to figure it out on their own with current funding levels is also low. But the chance for patients with institituional cooperation and support, working with orgs like the OMF, or polybio, and with better funding, from the NIH; to figure it out, would be the highest chance we have (although maybe still low in an absolute sense). We don't have very good odds no matter what we do, but researching and experimenting and striving to understand the disease etiology is something that can certainly collectively increase our odds substantially.
 

Alvin2

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I have no problem with anyone saying "environmental aspects have nothing to do with ME/CFS"
I have yet to come across anybody who categorically says this and is not a CBT/GET acolyte.
In fact many with ME/CFS have found that mold, scents and chemical sensitivities are common in patients and the forum does not discriminate against anybody for this.
 
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Little of what you are saying has not been looked into already. We can go in circles for eternity but why waste our energy doing so?
I feel as though I could say the same to you. I have answered all of your concerns. your responses are circular. we will not convince each other. I'm not writing, or making videos to preach to the choir, but I'm also not trying to convert people who are totally against being converted. I do it for an audience of whatever the ME/CFS equivalent of "swing voters" is.
There are some people who will never update their priors. I have, many times in the disease. Early on I believed it was mainly a disease of metabolic issues/traps with nutritional deficiences exaggerating it. then I thought it was primarily immunological. At one point I thought it may be due to occult infections. Now I have a different theory.

As far as the idea that "little of what I am saying has not been looked into" this is just totally false. Its fine to claim that it would be useless to look into because it doesnt seem likely, but it certainly hasn't been looked into, and certainly not thoroughly. @Hip would agree, I am fairly sure, that there is a shockingly small proportion of ME/CFS studies on mold or environmental toxins, in proporiton to the anecdotal evidence. There is perhaps one study on this, maybe two at max, one of them being very flawed. And you know what? with the small total amount of high quality studies in ME/CFS , even the things that have been studied the most, I wouldn't outright dismiss--like viruses. Viruses have been studied far, far, far more than environmental factors, but as there are not enough high quality ME/CFS studies in general, I don't think theres much harm in studying viruses more, and I dont think we could rule them out even if all of the studies were negative (which they weren't, it seems somewhat ambiguous).

And there hasnt been a single study on the connection of CCI to ME/CFS that I am aware of . there was a single swedish study that was studying both chiari and csf flow issues and cci, initially; and the cci portion was to be studied with a trip to the UK to do upright mris. I believe this portion was canc3elled, and the study went on without the cci portion, and mostly focused on chiari, indicators of csf flow, and supine measurements that can rule in but not rule out, cci. @jeff_w and @Hip may know more, but as far as i know there havent been any studies besides this aimed at cci and ME/CFS. If you know more, i would sincerely like to know, b/c ive been very excited for cci/me/cfs studies for the past couple years. I mean, I thought it was wild that Jen and jeff's remission didnt lead to case studies, as remarkable as they were, at the very least, and there was so much clamor from patients to study this--but again, this didnt seem to land on the ears of researchers, perhaps *besides* the swedish group and polybio, who seem willing to study it but not yet able (not much funding yet, new org).
 
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I have yet to come across anybody who categorically says this and is not a CBT/GET acolyte.
In fact many with ME/CFS have found that mold, scents and chemical sensitivities are common in patients and the forum does not discriminate against anybody for this.
I wasn't saying people say that--although many people say "Mold sensitivity has nothing to do with ME and vice versa", for example--My point was that people could say that, and it wouldn't really bother me, despite contradicting my theory and lived experience. In contrast, the idea that patients cannot meaningfully contribute to the development of theories of etiology and research and experiment, does bother me, quite a lot.
 
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I have yet to come across anybody who categorically says this and is not a CBT/GET acolyte.
In fact many with ME/CFS have found that mold, scents and chemical sensitivities are common in patients and the forum does not discriminate against anybody for this.
I would be willing to bet Jonathan Edwards has said this, and is not a CBT/GET acolyte. Nevertheless, the point is not whether it was said, im using an extreme example to make a point--that someone saying that wouldn't bother me, whereas someone speaking more broadly to dismiss the idea of patient-led research bothers me immensely.
 

Alvin2

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Its fine to claim that it would be useless to look into because it doesnt seem likely
There is no point in pretending decades of ME/CFS theorizing and some investigation has not happened.
We all wish there was a lot more research but your theories are not new to any of us.
As far as the idea that "little of what I am saying has not been looked into" this is just totally false.
If you choose to believe this thats your business.
although many people say "Mold sensitivity has nothing to do with ME
Pretending this is the popular sentiment in the ME/CFS world is silly.
In contrast, the idea that patients cannot meaningfully contribute to the development of theories of etiology and research and experiment
No one here says this. Most all the posts on he forum are about patients trying things, coming up with new theories, and hoping to get lucky and figure out something new that we can use.
In fact we are so narrow minded/driven to find something useful that one could argue we are neurotic.
 

Alvin2

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I would be willing to bet Jonathan Edwards has said this, and is not a CBT/GET acolyte. Nevertheless, the point is not whether it was said, im using an extreme example to make a point--that someone saying that wouldn't bother me, whereas someone speaking more broadly to dismiss the idea of patient-led research bothers me immensely.
Good for him.
One person who disagrees with you does not speak for everybody.
 
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you seem to think you have found the magic bullet and its your mission to convince everyone else that you are right and they are wrong.
it is not necessarily pathologically to believe somewhat in your theory, but I wouldnt even say i believe extremely strongly in my theory. at present, I believe in it more than other theories, but I do not think any of the treatments aimed at it are magic bullets, in the least. Thats why I am asking for research on "environmental factors/toxins/pollutants" (extremely broad--showing that I don't know what the specific environmental factor is), rather than telling people what treatment to do.

the treatments for environmental toxicity are more scattershot than they should be, even if they have helped a lot of people, precisely bc we dont have enough research on what the environmental factors are, only theories and guesses. Asking for research, or conducting research, is not something you do because you are sure, it is something done in a spirit of uncertainty and openness. However, its not unreasonable to think that some things should be studied, b/c they are promising avenues. this is so far from thinking i have found a magic bullet that I think your phrasing is wrong and rather harsh. I don't know what I have found. Its not a magic bullet, but it may be an important clue. and i am not the sole person who found it. its been found by many, and many of them gave up on asking researchers to help, and chose to live without knowing what it was. I, on the other hand, am not really accepting of not knowing.

additionally, I'm asking the OMF to research more than one single thing. I am not asking them to research what they are currently researching less, necessarily, at least not much less. And I asked them to research two wholly different, if possibly related things: CCI, and toxins/pollutants.

There seems to be a connection btwn these two things. Even dr bolognese, who is relatively conservative, and also is a surgeon who doesnt conduct that much research; has seen enough patients who have had cci without head trauma or hereditary ctd, that he has wondered how that happened and put the pieces together --that patients have mcas or environmental inflammation most likely leading to cci. this is his clinical observation. He's a doctor--maybe his opinion will carry more weight than mine. of course, patients saw and posited the reasons for, this connection far before dr bolognese. jen and jeff noticed it, but i think @Hip also laid out some of the mechanisms of specific matrix metalloproteinases that degrade collagen and elastin and are high in me/cfs.

So, my neck and head are coming apart, my skull sinking down and crushing my brainstem, and it causes immense pain, and i can get a surgery, but in the meantime (its too long a wait), I'd like to know why. Because there was no head trauma, there was no hereditary disease. all we have to go on are infections and environmental exposures. I think its reasonable to not want to rest until you know why major tissue damage like that, apparently irreversible and leading to irreversible surgeries, happened. And thats why I want research into this so badly.

I have not in the least made up my mind about what the cause is. Like I said, the environmental toxins could be anything. but i do not think that skulls do that randomly, in fact some neurosurgeons have said (not mine, but some) that its impossible for a skull to do that unless you had connective tissue disorder and/or head trauma. I think one of Jen's neurosurgeons that followed up with her *after surgery* said this to her--that what had happened to her was impossible. well... the point is , yes I am adamant about asking for research, but its because of uncertainty, not dogmatic certainty, that I would want it. If i had found a magic bullet, id just keep it to myself or tell it to friends. I wouldnt spend my time getting into internet arguments, id enjoy being cured. I have found a piece of the puzzle, instead, but its an important piece.
 

Alvin2

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it is not necessarily pathologically to believe somewhat in your theory, but I wouldnt even say i believe extremely strongly in my theory. at present, I believe in it more than other theories, but I do not think any of the treatments aimed at it are magic bullets, in the least. Thats why I am asking for research on "environmental factors/toxins/pollutants" (extremely broad--showing that I don't know what the specific environmental factor is), rather than telling people what treatment to do.

the treatments for environmental toxicity are more scattershot than they should be, even if they have helped a lot of people, precisely bc we dont have enough research on what the environmental factors are, only theories and guesses. Asking for research, or conducting research, is not something you do because you are sure, it is something done in a spirit of uncertainty and openness. However, its not unreasonable to think that some things should be studied, b/c they are promising avenues. this is so far from thinking i have found a magic bullet that I think your phrasing is wrong and rather harsh. I don't know what I have found. Its not a magic bullet, but it may be an important clue. and i am not the sole person who found it. its been found by many, and many of them gave up on asking researchers to help, and chose to live without knowing what it was. I, on the other hand, am not really accepting of not knowing.

additionally, I'm asking the OMF to research more than one single thing. I am not asking them to research what they are currently researching less, necessarily, at least not much less. And I asked them to research two wholly different, if possibly related things: CCI, and toxins/pollutants.

There seems to be a connection btwn these two things. Even dr bolognese, who is relatively conservative, and also is a surgeon who doesnt conduct that much research; has seen enough patients who have had cci without head trauma or hereditary ctd, that he has wondered how that happened and put the pieces together --that patients have mcas or environmental inflammation most likely leading to cci. this is his clinical observation. He's a doctor--maybe his opinion will carry more weight than mine. of course, patients saw and posited the reasons for, this connection far before dr bolognese. jen and jeff noticed it, but i think @Hip also laid out some of the mechanisms of specific matrix metalloproteinases that degrade collagen and elastin and are high in me/cfs.

So, my neck and head are coming apart, my skull sinking down and crushing my brainstem, and it causes immense pain, and i can get a surgery, but in the meantime (its too long a wait), I'd like to know why. Because there was no head trauma, there was no hereditary disease. all we have to go on are infections and environmental exposures. I think its reasonable to not want to rest until you know why major tissue damage like that, apparently irreversible and leading to irreversible surgeries, happened. And thats why I want research into this so badly.

I have not in the least made up my mind about what the cause is. Like I said, the environmental toxins could be anything. but i do not think that skulls do that randomly, in fact some neurosurgeons have said (not mine, but some) that its impossible for a skull to do that unless you had connective tissue disorder and/or head trauma. I think one of Jen's neurosurgeons that followed up with her *after surgery* said this to her--that what had happened to her was impossible. well... the point is , yes I am adamant about asking for research, but its because of uncertainty, not dogmatic certainty, that I would want it. If i had found a magic bullet, id just keep it to myself or tell it to friends. I wouldnt spend my time getting into internet arguments, id enjoy being cured. I have found a piece of the puzzle, instead, but its an important piece.
Once again this is not news to OMF. Nor is everyone disagreeing with everything you say though you are apparently convinced this is the case. Environmental factors has been part of the discussion for probably two generations already.
Good luck.
 
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In contrast, the idea that patients cannot meaningfully contribute to the development of theories of etiology and research and experiment, does bother me, quite a lot.
No one says this

. Most all the posts on he forum are about patients trying things, coming up with new theories, and hoping to get lucky and figure out something new that we can use.
Our lived experience is important of course, but t's just not the same thing as having a PhD in some field that can help us. I can no more research potential cures than I can land a crashing jumbo jet even though I have flown on a plane many times, and know just how that feels, including some very scary turbulence.

The hard and scary part of this situation is that ME/CFS is a very complicated illness and can't be cured without the help of modern medicine. Getting access to medical care is tremendously difficult when we are dismissed as "all in your head". This is the main benefit of citizen science, in my opinion- getting medical practitioners to hear us, see us, and take us seriously. Not because we can do the actual science part.
You claimed that noone says this. This was the post I was responding to, and referencing. It says, that the only thing we can offer is lived experience , which is subjective, and that we cannot research potential cures, nor can we "do the actual science part". I dont understand how this is different from saying that patients cannot meaningfully contribute to theories of me/cfs etiology etc. I would note that its thankfully a minority opinion


There is no point in pretending decades of ME/CFS theorizing and some investigation has not happened.
We all wish there was a lot more research but your theories are not new to any of us.
I literally pointed out examples of the only known studies of the two things that I want the OMF to look into. please argue in good faith. we have a tiring disease. We don't need to argue in bad faith. Instead of saying something vague and intimating im wrong, show me where the fruit of all of these "decades of ME/CFS theorizing and investigation" is. Are you claiming that I'm wrong that there are only two studies on mold and cfs, and that there isnt a study on cci and cfs-- at least not beyond the Bragee one that never used upright imaging?
If you choose to believe this thats your business.
What I choose to believe is based on my good faith interpretation of the evidence, evidence that you will not present or engage with. I am claiming that these areas have been underresearched and I provided examples, of the few research papers. You are claiming that they have been so thoroughly researched its old news. Where is this research? I would love to see it.
 

Alvin2

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You claimed that noone says this. This was the post I was responding to, and referencing. It says, that the only thing we can offer is lived experience , which is subjective, and that we cannot research potential cures, nor can we "do the actual science part". I dont understand how this is different from saying that patients cannot meaningfully contribute to theories of me/cfs etiology etc. I would note that its thankfully a minority opinion
They are saying they have not gone to medical school and are not working in an accredited research lab.
 
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Once again this is not news to OMF
I am not claiming it is "news" to the OMF, only that they have not formally researched it. Actually, they have researched environmental toxins, in one small instance--that of heavy metal hair studies, in which they found high mercury, and some uranium. I am grateful to that, and remembered it, so I will acknowledge it. but they have not researched inhaled environmental toxins, they have not researched biotoxins, and they have not researched (yet) cci or the connection btwn these toxins and cci. Them being aware of it does not equal researching enough to dismiss it. One has to refute a hypothesis via experiment, not just by "Knowing about it" and deciding its not worthy of experiment. they're free to do whatever they like of course, but if they dont do an experiment to refute the hypothesis, it doesnt matter how old the hypothesis is, it is just as possible, bc it hasn't been researched or refuted.

I am not claiming anything I am saying is particularly new, except for a few of the details in my etiology theory! Most of what I'm saying is cobbled together by theories of greater minds. I have never claimed novelty here. But I am well aware of cfs history and the history of the research, and I have not found any meaningful studies refuting environmental toxin involvement in cfs , or craniocervical instability involvement in cfs. And yet, what I get from your posts is that you think that this has already been studied enough to be refuted. yet i am not aware of it being studied at all, in the latter, or more than two small studies, in the former (not very much in the sea of thousands of me/cfs studies).
Nor is everyone disagreeing with everything you say though you are apparently convinced this is the case. Environmental factors has been part of the discussion for probably two generations already.
If you are not disagreeing with everything I say, I am thoroughly confused. You have contradicted almost everything ive said, but without addressing my central point, that of the lack of studies. We may be genuinely misunderstanding each other, rather than any bad faith--of course with brain fog, thats certainly possible.

what I am asking, again, is the following:
I am claiming that these areas have been underresearched and I provided examples, of the few research papers. You are claiming that they have been so thoroughly researched its old news. Where is this research? I would love to see it.
I think we can end on a polite note if this is a misunderstanding and not any bad faith argument. sometimes its genuinely hard to tell. if you don't disagree that these theories have not been researched or refuted, then the only thing we disagree on is tactics of how to get things researched, which is deeply subjective, and I dont really care if someone disagrees with me on that.
 
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They are saying they have not gone to medical school and are not working in an accredited research lab.
that is a paraphrase, not what they said. you can ask them what they mean but I think its quite clear. none of us claimed to have gone to medical school or worked in accredited research labs. the quote is clear that that person thinks that we can't offer anything re: theories of etiology or potential cures. how did you get your interpretation of it?
 
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so really there is no followup research on CCI surgeries leading to ME remisssions? Wow OK.
not as far as i know. not in the sense of formal research--@Hip has tracked some outcomes in surveys. Im astonished muyself that Jen and Jeffs cases at the very least didnt get written up for a medical journal. and even more astonished that no researcher since has set up a simple controlled , double blinded study of upright mris (which arent costly) in patients versus healthy controls, It would not be a difficult study to run, nor particularly expensive--it would be a lot easier than finding the environmental toxins that we dont know what they are.
but it has not been done.

Henderson has a singlle study that tracks fatigue as well as other symptoms in his post surgery patients, but this was before he even knew "ME/CFS" existed, and fatigue is not ME/CFS, it is simply a single symptom. And that study wasn't blinded. Honestly, even the literature by the surgeons i respect like him and bolognese is disappointingly scant, almost like they dont have time in between surgeries to do studies? i dont know...
 
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They are saying they have not gone to medical school and are not working in an accredited research lab.
"Our lived experience is important of course, but t's just not the same thing as having a PhD in some field that can help us. I can no more research potential cures than I can land a crashing jumbo jet even though I have flown on a plane many times, and know just how that feels, including some very scary turbulence.

The hard and scary part of this situation is that ME/CFS is a very complicated illness and can't be cured without the help of modern medicine. Getting access to medical care is tremendously difficult when we are dismissed as "all in your head". This is the main benefit of citizen science, in my opinion- getting medical practitioners to hear us, see us, and take us seriously. Not because we can do the actual science part. "

to me, this very clearly reads as saying that people with this illness without PhDs can only contribute their symptomology and subjective lived experience, not anything, formal or informal, to research or theories on etiology. Alvin , You could ask the author, wabi-sabi
 
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Alvin2

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that is a paraphrase, not what they said. you can ask them what they mean but I think its quite clear. none of us claimed to have gone to medical school or worked in accredited research labs. the quote is clear that that person thinks that we can't offer anything re: theories of etiology or potential cures. how did you get your interpretation of it?
I am tired of this game, your narrative is your goal so good luck.