Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

Bob

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I understand that this is just one project for Nath and not his lifelong goal, however when he says he isn't going to become an ME/CFS expert i wonder what he means.
I think we may be in danger of hanging onto his every utterance, in what I thought was a casual and candid interview.

I've watched the video now, and I was expecting the very worst after reading this thread beforehand, so I braced myself for a rough ride, and I was pleasantly surprised. I'm not saying it's perfect but there was some good stuff in the video; He emphasised immunology and autoimmunity, and loads of other really essential stuff.

With regards to not being an expert in ME, I think he meant that he doesn't need to be an expert in ME, but he needs to be an expert in the scientific method, designing trials, and interpreting data: he's interested in the data, and will follow it. That's what he's interested in. He's looking at cells and biological signatures, not the day-to-day difficulties of living with ME. As long as he's got his cohort in place, then he doesn't need to know much about ME. I think he was also being candid; in that he doesn't intend to devote his life to ME, but he's going to do the best he can with this project, so let him get on with it. That was my interpretation anyway.
 
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Sasha

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I agree, @Bob - he addresses (well, I thought) many points of concern and I don't think that the discussion on this thread has been entirely responsive to what he actually said. Of course, it's a lot to take in at one go and there's a transcript coming up, which I think will be helpful.
 

duncan

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I think that his talk is in many ways similar to the NIH CFS study of which he is lead investigator: There is a lot of good things in there, and some concerning things as well. Neither should be ignored.
 

Amaya2014

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Pg. 4, Dr. Nath... "And so our overall hypothesis, then, for the study was that the syndrome is triggered by a viral illness that results in immune-mediated brain dysfunction. And so the brain part is key here because we think that a lot of these symptoms are probably triggered through the central nervous system. And so that brings in our expertise, right, so we have the virology, we have the immunology, and we have the neuroscience in here."
 

viggster

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I wish the people hate-mailing individuals at NIH would read this section of the transcript and realize they are hurting our cause. I doubt they will but we can always hope. Senior scientists at NIH have a lot of leeway in what they study, and some in our community have already driven away potential allies.

"And.... But I think what has happened is because media were just so... and it started
scrutinizing the few names I put up over there, that a lot of people now come to me and say
that, “You know what, I don't want you mentioning my name,” and then the other people
said, “I don't want to have anything to do with it, I've got enough things that I'm doing”. And
so that's become a bit of a challenge for me especially when there are very prominent
scientists that I've approached that never will say no, but then they become reluctant to
answer emails and so on, so you're going to kind of start getting a feeling that people feel
that, do they really want their name out there on these kind of things?

So, I think people have to be a little bit careful as to how critical you become. You can end
up....We're here to try and help. You can end up antagonizing all these people and they are,
you know, busy doing other things. They're all.... There's no reason for them.... You can't
force people to study your disease. People have to do it because they think it's important to
study. So you've got to think that we're on the same team. And we want to really try and help,
but we can't do that if the very people you want to help become antagonistic towards you."
 
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duncan

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I wish key scientists occasionally would read forums such as this so they know to be a little bit careful as to how indifferent or uninterested they frequently can seem to patient input. They can end up antagonizing (and further marginalizing) some patients who already have been disenfranchised from the medical community through no fault of their own. Those people sick with ME are, you know, already suffering and in misery....So if the key scientists really think we are on the same team, then consistently acting like it would be a good thing.

I certainly am against hate mail if that is indeed happening. None of us wants that. On the other hand, any good practitioner of Science should embrace honest, constructive criticism as an acid test for validity.

Paying lip service to a patient/investigator "team" can't be helpful to the quest for progress. Jettisoning the FMD control group is yesterday's news. It would be a step in the right direction to see more real changes relative to the study dynamics based on a truly collaborative patient/investigator relationship.
 

Comet

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I wish the people hate-mailing individuals at NIH would read this section of the transcript and realize they are hurting our cause. I doubt they will but we can always hope. Senior scientists at NIH have a lot of leeway in what they study, and some in our community have already driven away potential allies.

"And.... But I think what has happened is because media were just so... and it started
scrutinizing the few names I put up over there, that a lot of people now come to me and say
that, “You know what, I don't want you mentioning my name,” and then the other people
said, “I don't want to have anything to do with it, I've got enough things that I'm doing”. And
so that's become a bit of a challenge for me especially when there are very prominent
scientists that I've approached that never will say no, but then they become reluctant to
answer emails and so on, so you're going to kind of start getting a feeling that people feel
that, do they really want their name out there on these kind of things?

So, I think people have to be a little bit careful as to how critical you become. You can end
up....We're here to try and help. You can end up antagonizing all these people and they are,
you know, busy doing other things. They're all.... There's no reason for them.... You can't
force people to study your disease. People have to do it because they think it's important to
study. So you've got to think that we're on the same team. And we want to really try and help,
but we can't do that if the very people you want to help become antagonistic towards you."
What you say is absolutely true. And I think harassing anyone at the NIH, or anyone else for that matter, is wrong, is a terrible idea, and should never happen.

BUT... the reality is that we are fighting a decades-long battle for life, health, recognition and dignity. There are going to be some loud voices. If the Medicals (docs, researchers, etc) want to do the right thing by this community, it's their turn to suck it up.

Harassment is a terrible thing and it should NOT be happening in the name of ME/CFS. But I hope they won't give up. I hope they will have the realization that this is not happening because a faction of our co-diseased are just psychosomatic wing nuts - maybe they will realize that this is happening because we are desperate and, in reality, are begging for help.

If the NIH has to hire email readers, so the researchers can get back to business, then that's the price we taxpayers will have to bear, because of decades of governmental neglect. If the NIH has to hire researchers just to figure out what this disease is all about and why we are so upset, then so be it. Just get it done already.

I have lost EVERYTHING due to this disease. So I hope they can tough it out for us. Anyone who does is a true hero in my book.

PS - Please don't harass the Medicals. Seriously.
 

Sasha

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If the Medicals (docs, researchers, etc) want to do the right thing by this community, it's their turn to suck it up.
I think it's incumbent on us to do all we can to make sure there's as little as possible for them to have to suck up. They can just walk away, if we're too difficult to deal with.

I understand that it's fear of history repeating itself that's driving a lot of the community's worries but we've got to take seriously Nath's concern that we're alienating people who might have wanted to help. There are lots of other diseases they could be working on.

Let's also please be careful to talk with respect about researchers who are trying to help us. This is the open forum and anyone can read what we say. When we name people, we're talking about real people with real feelings.
 

Comet

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What you say is absolutely true. And I think harassing anyone at the NIH, or anyone else for that matter, is wrong, is a terrible idea, and should never happen.

BUT... the reality is that we are fighting a decades-long battle for life, health, recognition and dignity. There are going to be some loud voices. If the Medicals (docs, researchers, etc) want to do the right thing by this community, it's their turn to suck it up.

Harassment is a terrible thing and it should NOT be happening in the name of ME/CFS. But I hope they won't give up. I hope they will have the realization that this is not happening because a faction of our co-diseased are just psychosomatic wing nuts - maybe they will realize that this is happening because we are desperate and, in reality, are begging for help.

If the NIH has to hire email readers, so the researchers can get back to business, then that's the price we taxpayers will have to bear, because of decades of governmental neglect. If the NIH has to hire researchers just to figure out what this disease is all about and why we are so upset, then so be it. Just get it done already.

I have lost EVERYTHING due to this disease. So I hope they can tough it out for us. Anyone who does is a true hero in my book.

PS - Please don't harass the Medicals. Seriously.
Yikes, I'm quoting myself... I guess I realized what I am trying to say is that if the Medicals want to be involved in ground-breaking, life-changing, possibly history-making research that has the potential to benefit millions, get the ball rolling for more studies, and therefore dramatically alter the horrific life conditions of those with ME/CFS for the better, they have to realize, it ain't gonna be easy.
 

Comet

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I think it's incumbent on us to do all we can to make sure there's as little as possible for them to have to suck up. They can just walk away, if we're too difficult to deal with.

I understand that it's fear of history repeating itself that's driving a lot of the community's worries but we've got to take seriously Nath's concern that we're alienating people who might have wanted to help. There are lots of other diseases they could be working on.

Let's also please be careful to talk with respect about researchers who are trying to help us. This is the open forum and anyone can read what we say. When we name people, we're talking about real people with real feelings.
Totally agree.
 

duncan

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Real people with real feelings, many of which appear to have no compunction about turning a deaf ear to our vocal and well-informed concerns.

Let's face it - many of us know far more about ME/CFS than nine out of ten of those investigators. We know a hell of a lot more about the underlying politics that helped shape the backdrop to this whole situation as well.

But we might as well be talking from our graves.
 

viggster

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Let's also please be careful to talk with respect about researchers who are trying to help us. This is the open forum and anyone can read what we say. When we name people, we're talking about real people with real feelings.
Thank you for saying that. I think some in our community have trouble separating the institution from the individual. Certain strategies & tactics that might be useful in getting an institution to move in a positive direction (lots of yelling & shaming, etc.) can absolutely backfire when dealing with individuals. We now have people inside NIH who want to help us and who have designed an innovative, very deep biological investigation. They have listened to the patient community & clarified the entry criteria & dropped an unnecessary control group. That's huge progress.
 

duncan

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It's progress of a sort. A tentative step or two on an awkward first date.

So, now for a little walk hand-in-hand. Together. A team.
 

Roy S

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I wish the people hate-mailing individuals at NIH would read this section of the transcript and realize they are hurting our cause. I doubt they will but we can always hope. Senior scientists at NIH have a lot of leeway in what they study, and some in our community have already driven away potential allies.
I would like to stop all harmful communications and activities to whatever extent they are really happening, but how can any of us try to do that without knowing specifically who is doing what and to whom?

This isn't specifically just to you, Brian. There was squabbling from both sides of the government/patient community divide that I had to deal with when I was in Washington 25 years ago and before that. (that was pre-e-mail but post Pony Express) At least then I knew who to talk to.
 

viggster

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would like to stop all harmful communications and activities to whatever extent they are really happening, but how can any of us try to do that without knowing specifically who is doing what and to whom?
Yes, it's a conundrum. I don't know the whole answer. I get discouraged when I come onto a thread like this and I see someone has decided they didn't like Dr. Nath's demeanor in his Q&A, and then people *who clearly have not watched the video* pile on and decide he's now not to be trusted. It's very damaging and it takes a lot of energy to push back against. Anyone who watches the video and listens with an open mind will see he's sincere in wanting to help figure this out, and he's designed a very deep & complicated study to do so.

So part of the answer, in my view, is to try to keep knee-jerk negativity in check. It contributes to an us-versus-them mentality and provides fertile ground for the kinds of negative messages that have been sent to NIH.
 
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Comet

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Yes, it's a conundrum. I don't know the whole answer. I get discouraged when I come onto a thread like this and I see someone has decided they didn't like Dr. Nath's demeanor in his Q&A, and then people *who clearly have not watched the video* pile on and decide he's now not to be trusted. It's very damaging and it takes a lot of energy to push back against. Anyone who watches the video and listens with an open mind will see he's sincere in wanting to help figure this out, and he's designed a very deep & complicated study to do so.

So part of the answer, in my view, is to try to keep knee-jerk negativity in check. It contributes to an us-versus-them mentality and provides fertile ground for the kinds of negative messages that have been sent to NIH.
I just want to say that in no way did I mean to imply that I don't trust Dr. Nath. I do! I think what he is doing is fantastic and ground breaking! No study is perfect, but I am really thrilled about this and can't wait for it to start.

The point that I was trying to make, I guess badly, is that the Medicals (not trying to be disrespectful) who stick with us and help some very desperate people are going have to have thick skin. It sucks, but that's just reality. Hopefully, there are some who truly want to help some very sick people and hopefully the NIH will help filter out the harassment.
 

duncan

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Ah. So voices of dissatisfaction with the study, or dissent, from venues such as this forum become "fertile grounds for the kinds of negative messages that have been sent to NIH"?

I hope that is not what is being suggested.