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

A.B.

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I think there may be some disappointment because we were hoping for someone whose grand objective is to figure out ME/CFS. Someone who won't give up and won't be tempted to give in to psychobabble when nothing is found. Someone like Ronald Davis.

Dr Nath cannot give ME/CFS his undivided attention, and his interest is in the brain immunological side of things.

I thought his answers were sensible and made sense in this context. He is not a ME/CFS specialist, but he is a specialist in his own field and will apply his knowledge to ME/CFS to see if any progress can be made.
 
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duncan

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Is there anybody - besides Vicky Whitemore - involved is this study so far whose attitude we find warm and engaging?
 

waiting

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All points made about Dr. Nath likely being a superior scientist in his field are taken.

However, *tone* -- in his crucial role -- at this crucial time in ME research (IOM, P2P, Rituximab, Klimas, Montoya, Stevens, Lipkin, Hornig, NIH involvement, etc.) and given the history of ME patients' & ME medical professionals' experience of stigma & dismissal, is important.

The leader's tone can make a big difference in communication among scientists and the resulting quality of the outcome.

Hopefully, the seminars he is planning may enlighten him on the value of speaking to the main ME experts. There are not "hundreds" of experts people think he should speak to -- I would characterize it as more like a "handful" of experts.
 

Kati

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I think there may be some disappointment because we were hoping for someone whose grand objective is to figure out ME/CFS. Someone who won't give up and won't be tempted to give in to psychobabble when nothing is found. Someone like Ronald Davis.
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This study will lead us much forward than we are now. The number of experiements and testing that is proposed is unprecedented. I have a hard time imagining how busy, how poked and proded the patients who are selected to this study will be. Not for the faint at heart.

We are just as lucky to have Ron Davis studying us.

The more teams, the better. We need these teams funded.
 

viggster

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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.
Not sure what you mean by 'side-swipe.' Saying he didn't need to call them is not a side-swipe in my view. He cited their papers as one of the motivations for designing this study the way he did. That's a huge sign that he's taking their work seriously.
 

LiveAgain

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I think he's just unfamiliar with the history and doesn't understand what all the fuss is about. I'm excited about the science and I'm sure he's brilliant, but not loving the attitude. It's like they're doing us a favor and we should just shut up and be grateful. What other disease is treated this way? And last time I checked we're citizens and tax payers - they work for us. This isn't a favor - it's a job they are being paid to do.

I really didn't understand his response about bias. No one asked them to grill every scientist involved on their personal views of ME/CFS but it's not unreasonable to ask that the ones who have stated it's psychological be replaced. Even someone unfamiliar with the history should be able to grasp this.

But whatever, I'm used to doctors behaving this way - as long as they do the science (which does seem really impressive) and get us some real answers, that's all that matters. And like he alluded to, hopefully they'll get some leads and then the experts (the ones who ARE passionate about ME/CFS and really care about patients with the disease) can build on NIH's work.. but who knows, maybe the experts will figure it out first.
 

BurnA

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Dr. Nath does not need more emails from patients. He has responded to hundreds of them already.
Agreed if there is one message i got was that emails are an annoyance and judging by his tone i don't think he is going to give them too much thought.

I do agree that emailing him is not a good use of his time, i would much prefer him to be working on this project than answering an individuals email.
 

Scarecrow

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Saying he didn't need to call them is not a side-swipe in my view.
That wasn't what I was referring to (and I agree that he doesn't need to call them). I think it's clear that I was talking about the trials and not the investigators.

Nath has twice made derogatory comments about the trials - although he was admittedly more ambiguous today - that may be well-founded but weren't strictly necessary.

Now that I think about it, the first time he was purely negative, this time he described it as "good and bad", so arguably, I shouldn't be calling him on it.
 

BurnA

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And last time I checked we're citizens and tax payers - they work for us. This isn't a favor - it's a job they are being paid to do.
I agree with a lot of your post but take exception to the above. These people are not duty bound to work on this project and he indicated that some people are reluctant to have their name associated with it. I can understand that somewhat, if there is truth to the story about angry emails, so i think its worth bearing that in mind.
 

BurnA

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That wasn't what I was referring to (and I agree that he doesn't need to call them). I think it's clear that I was talking about the trials and not the investigators.

Nath has twice made derogatory comments about the trials - although he was admittedly more ambiguous today - that may be well-founded but weren't strictly necessary.

Now that I think about it, the first time he was purely negative, this time he described it as "good and bad", so arguably, I shouldn't be calling him on it.
He passed a comment that if you examine ( these ? ) trials closely you'll find holes in them or something like that, i wasn't sure if he was generalizing or specifically talking about Fluge and Mellas work.

He did describe them as small studies previously. ( Cant argue with that except i'd rather have a small yet significant study than a large insignificant one so size may not be a great consideration )
 

A.B.

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Also worth keeping in mind that the Rituximab studies do have flaws. The primary outcome in the pilot study was negative (probably due to the authors underestimating the delay in response and response time variability). The second study didn't have placebo controls. There is every reason to be optimistic but they are not perfect and we clearly needed a larger trial to confirm the results.
 

LiveAgain

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I agree with a lot of your post but take exception to the above. These people are not duty bound to work on this project and he indicated that some people are reluctant to have their name associated with it. I can understand that somewhat, if there is truth to the story about angry emails, so i think its worth bearing that in mind.
Well I'm not sure how NIH works.. as far as how scientists are assigned to projects. I assumed their boss gives them a job and expects them to do it. Scientists who are truly looking for biological causes have no reason to not want their name associated with the project. The ME/CFS community adores those scientists and are just as public in applauding their efforts as they are in expressing disdain for the psychologizers. Agree that tons of angry, nasty e-mails are probably not helpful but I think organized petitions and advocacy orgs taking our concerns to them is okay.
 

BurnA

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Well I'm not sure how NIH works.. as far as how scientists are assigned to projects. I assumed their boss gives them a job and expects them to do it. Scientists who are truly looking for biological causes have no reason to not want their name associated with the project. The ME/CFS community adores those scientists and are just as public in applauding their efforts as they are in expressing disdain for the psychologizers. Agree that tons of angry, nasty e-mails are probably not helpful but I think organized petitions and advocacy orgs taking our concerns to them is okay.
We had a discussion about this on another thread, might be better to continue it there in case this one gets sidetracked

http://forums.phoenixrising.me/inde...ls-to-the-nih-good-or-bad-split-thread.43866/
 

viggster

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I'm excited about the science and I'm sure he's brilliant, but not loving the attitude. It's like they're doing us a favor and we should just shut up and be grateful. What other disease is treated this way? And last time I checked we're citizens and tax payers - they work for us. This isn't a favor - it's a job they are being paid to do.

I really didn't understand his response about bias. No one asked them to grill every scientist involved on their personal views of ME/CFS but it's not unreasonable to ask that the ones who have stated it's psychological be replaced. Even someone unfamiliar with the history should be able to grasp this.
When assessing Dr. Nath, please remember that he has taken time out of his schedule (which includes emergency Ebola & Zika research) to personally answer many, many patient emails.

He answered the question Dr. Nahle asked about bias of researchers. His answer is that the study is designed so that personal bias of individual researchers doesn't matter. You might not like the answer, but he did answer the question in a forthright manner.
 
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From Act Up to Shut Up.

This is quite a change in tone from when he spoke at the CDC Grand Rounds, where he embraced ACT UP and other patient forums and even said "…they had a great impact on the way disease was handled, treated and moved the federal government to make changes at every level."
 

Mary

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When assessing Dr. Nath, please remember that he has taken time out of his schedule (which includes emergency Ebola & Zika research) to personally answer many, many patient emails.
I appreciate that; however, note that ebola and zika are considered emergencies. Zika especially is a newcomer on the medical scene and is getting tons of attention and money. Yes, ebola and zika are both devastating and horrific, but ME/CFS is also devastating and horrific, only it's invisible. People with ME/CFS have languished for decades, and it has destroyed millions of lives, but it is not considered an emergency (until you come down with it).

I wish Dr. Nath had just acknowledged WHY he has been deluged with e-mails, just a brief statement that this devastating illness has destroyed millions of lives and has been ignored and worse by the medical profession.

Having said that, I agree it's not a good idea to send him any more e-mails. Bit I hope that once the research starts and he has lots of personal contact with persons who have ME/CFS, that he will develop a sense of urgency and the importance of this research when he sees firsthand how CFS/ME destroys lives.