Welcome to Phoenix Rising!
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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
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.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 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.
He read their papers. That's how science is communicated.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.
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..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.
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.He read their papers. That's how science is communicated.
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.
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.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.
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.Does anyone know if the post exercise sampling is immediately post exercise or in the 24-48 hour PEM window ?
Was PEM mentioned ?
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.
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.He read their papers. That's how science is communicated.
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)
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 ?
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.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