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

[waiting]

I am very disappointed indeed in Dr. Nath's tone & dismissive behaviour. Zaher did a superb job facilitating this speaker, despite Dr. Nath's incredible hubris & rudeness.

 

[Kati]

I am very disappointed indeed in Dr. Nath's tone & dismissive behaviour. Zaher did a superb job facilitating this speaker, despite Dr. Nath's incredible hubris & rudeness.

I didn't interpret Dr Nath's tone and behavior as being dismissive. He is a scientist. He has one goal in mind, which is to do science. i think he is a great person to have as principal investigator. He has knowledge and motivation to work with this disease. we are lucky. The science that will be performed will be invaluable.

 

[Valentijn]

I think Nath has good intentions, but is in denial regarding the problems that can be caused by biased investigators. And the methodology still has weaknesses which they can exploit.

 

[BurnA]

I am very disappointed indeed in Dr. Nath's tone & dismissive behaviour. Zaher did a superb job facilitating this speaker, despite Dr. Nath's incredible hubris & rudeness.

I thought his answer to the question if he spoke with Fluge and Mella was particularly poor - saying he cant speak to everyone who write a paper on ME/CFS. Fluge and Mella aren't everyone, they are two doctors who have made what could be the biggest strides forward in this disease ever, especially from an immunological perspective, which is where Nath is interested.

 

[viggster]

I thought his answer to the question if he spoke with Fluge and Mella was particularly poor - saying he cant speak to everyone who write a paper on ME/CFS. Fluge and Mella aren't everyone, they are two doctors who have made what could be the biggest strides forward in this disease ever, especially from an immunological perspective, which is where Nath is interested.

He read their papers. That's how science is communicated.

 

[ryan31337]

I definitely felt his frustration and aggravation showing through at the complaints. I'd assume that he hasn't experienced the self-serving lengths that 'less scientific' investigators will go to and that he simply doesn't appreciate that a study with the wrong investigators is worse than no study at all...

As for his manner: the guy is probably a brilliant scientist. This is not always conducive to being an all-round personable guy with good communication skills

 

[viggster]

I think Nath has good intentions, but is in denial regarding the problems that can be caused by biased investigators. And the methodology still has weaknesses which they can exploit.

How exactly can Dr. Wallit affect, say, the antibody discovery Nath's lab will do? Or the immunological profiling that Wallit does not do? Or the metabolic studies that someone else will be doing? Or... or.. or..

 

[Sasha]

Like Dr Nath said, people volunteered to be on the study, presumably including him - I think we should be hugely grateful. We might have reservations about some aspects but overall, this will be a fantastic thing for us.

He read their papers. That's how science is communicated.

To an extent, but papers come out many months (or even several years) after interesting things are found. I'm glad he said that people were being invited to visit and give presentations, which will give people a chance to share promising leads that haven't yet made it into publication.

 

[BurnA]

He read their papers. That's how science is communicated.

yeah fair enough, the overall impression is he is someone who has a plan and is confident in it.

I think it was good that he pointed out how people are lending their time to this study on top of their normal day to day responsibilities.

 

[Kati]

I thought his answer to the question if he spoke with Fluge and Mella was particularly poor - saying he cant speak to everyone who write a paper on ME/CFS. Fluge and Mella aren't everyone, they are two doctors who have made what could be the biggest strides forward in this disease ever, especially from an immunological perspective, which is where Nath is interested.

In science, not everyone is keen to share unpublished findings, because this is how scientists get rewarded for their hard work, by publishing in peer-reviewed journals. While Dr Nath will most certainly learn lots at the planned seminar that he intends on holding, one of the great gift of this NIH study is that Dr Nath is planning to be Dr Nath and apply the rigorous science the way he has done on other topics, in neuro-immunology.

 

[BurnA]

He kept talking about fatigue, even post exercise fatigue, and that the purpose of the exercise was to fatigue patients.

Does anyone know if the post exercise sampling is immediately post exercise or in the 24-48 hour PEM window ?
Was PEM mentioned ?

 

[BurnA]

I think Nath has good intentions, but is in denial regarding the problems that can be caused by biased investigators. And the methodology still has weaknesses which they can exploit.

To me this study is about performing lots and lots of tests. I don't see bias as a factor in test results, given that the people performing these tests are possibly the pioneers of the testing technology, as he pointed out.
The biggest worry for me has been patient selection and he admitted that it may not be possible to have 100% correct cohort, but that he is aware this could be an issue and they are striving to ensure patient selection is rigorous ( I'm paraphrasing)

 

[Scarecrow]

Does anyone know if the post exercise sampling is immediately post exercise or in the 24-48 hour PEM window ?
Was PEM mentioned ?

He had the opportunity to address that very point during the Q&A but either didn't want to get into details or wasn't aware of the complexity.

I'd argue that testing should be done before, in the hour after and on the next 2 or 3 days.

 

[voner]

I found Dr. Nath to be pretty inarticulate, not having the best communication skills and having a significant ego. That said, I don't think the ego part is unusual for someone in his position. I kind of felt that the unwritten words coming through were something like, " hey, the director of the NIH asked me to do this, so I'm doing it. Stop bothering us and let us do our work. I have all this technology and techniques etc. that nobody else does and I will apply all that to the problem. Then I'm out of here, I have no desire to have expertise in this field of ME/CFS".

He answered two of my objections. explained why the limited number of patients exists in the study. he explained the mouse studies and I liked what he had to say. It was contrary to what I had previously read about the mouse portion.

I think we're lucky that the director of the NIH as a personal interest in this and the study is going to be done.

 

[Vasha]

I agree with @Kati. (Edit--I'm slow--and @viggster, @Sasha, and others.) My reaction was "Ah, dear. The way he is addressing some of these questions is going to be offputtng to some folks. But his scientific approach is good." As an academic, I am painfully aware that academics are not always politic--they are focused on their research and not necessarily used to a lot of politics. And they can be a little thin-skinned. That's not to excuse it--but just to say that scientists are very human.

As a matter of substance, I think his answer about bias was right on (though I very much take @Valentijn 's point). As a researcher, my goal is always to try to eliminate bias (so far as possible) through methodology. It's the only way--we can't eliminate human cognitive and other biases, so our best hope is to get the right design and methods.

I agree that Dr. Nath seemed a bit impatient with all the emails and suggestions, and that's too bad. I also wish he had not expressed the fact that everyone is doing this as an extra on top of their "day jobs" in the manner he did--but it's so hard for those who are not sick to know how that sounds to people whose lives are in suspension or worse. And again, substantively, it's useful to know that the researchers are all putting in some time on top of their other studies.*

It's clear (and he said) that ME/CFS is not his passion--his passion is immunology, and he is hoping to lend that expertise. Maybe he'll find that he becomes passionate about it--either way, I think we should welcome him and express gratitude for committing to this study.

Most importantly, the science is sounding good, and I am hopeful!

-Vasha (and sorry! I haven't been around--crashes galore and other stuff--but I have been reading off and on and as ever am so grateful for this community and its support)

*Obviously, we need to get to a place where there are _dedicated_ researchers and resources, and Dr. Nath has given us information that will help us argue to give researchers more resources so that they are not having to do this on top of their other work.

 

[Kati]

I found Dr. Nath to be pretty inarticulate, not having the best communication skills and having a significant ego. That said, I don't think the ego part is unusual for someone in his position. I kind of felt that the unwritten words coming through were something like, " hey, the director of the NIH asked me to do this, so I'm doing it. Stop bothering us and let us do our work. I have all this technology and techniques etc. that nobody else does and I will apply all that to the problem. Then I'm out of here, I have no desire to have expertise in this field of ME/CFS".

He answered two of my objections. explained why the limited number of patients exists in the study. he explained the mouse studies and I liked what he had to say. It was contrary to what I had previously read about the mouse portion.

I think we're lucky that the director of the NIH as a personal interest in this and the study is going to be done.

Dr Nath agreed to do this. But he is a busy man. He is a scientist. He speaks science. This is what I'm interested in. Not interested in his social skills.

He also mentioned that this study is not the only thing he is working on during his day. He added to his already busy schedule, which includes Zika virus which is seen as a public emergency.

 

[Scarecrow]

He read their papers. That's how science is communicated.

Undeniable. But he has twice taken the trouble to refer publicly to the rituximab phase I and II trials and taken a side swipe each time. He could try being politically more sensitive without compromising himself. I'm not particularly bothered but it's something that has been noticeable.

 

[Vasha]

To me this study is about performing lots and lots of tests. I don't see bias as a factor in test results, given that the people performing these tests are possibly the pioneers of the testing technology, as he pointed out.
The biggest worry for me has been patient selection and he admitted that it may not be possible to have 100% correct cohort, but that he is aware this could be an issue and they are striving to ensure patient selection is rigorous ( I'm paraphrasing)

Yes, I thought this was an important point. He's quite confident that patients with primary depression, etc, would stick out, and that they will be able to get a sense of where to go with cohorts. I do hope they have enough subjects for this to work--but they are getting referrals from experts--and using the CCC--which will help.

-Vasha

 

[Vasha]

He kept talking about fatigue, even post exercise fatigue, and that the purpose of the exercise was to fatigue patients.

Does anyone know if the post exercise sampling is immediately post exercise or in the 24-48 hour PEM window ?
Was PEM mentioned ?

I missed the earlier part of the talk, so I'm not sure if he went into more detail then, but when asked about this at the end, he did not specify a timeframe. He said that his hope was to see if immunological changes occur when patients are fatigued. Anybody else?

-Vasha

 

[Kati]

I missed the earlier part of the talk, so I'm not sure if he went into more detail then, but when asked about this at the end, he did not specify a timeframe. He said that his hope was to see if immunological changes occur when patients are fatigued. Anybody else?

-Vasha

There was no timeframe specified, however if he read the Fluge and Mella study, chances are he also read the Light and Light gene expression after exercise study. He also mentioned he read and also occasionally replied emails from patients (with an emphasis on keeping it short) so for those who want to make sure the proper timing will appear on the protocol, they could email him in that regard.