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

Bob

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Dr. Nath stated he isn't interested in somatization and doesn't want to play psychological games.
And then he spent the rest of the webinar talking about his incredibly complex, sophisticated and cutting-edge biomedical study.

The individuals in charge of this study caused this problem by including doctors who have written or stated that ME/CFS is psychological, plus added a psych control group (still no good explanation why).
Still only one person has managed to clearly explain to me why a psych control group was a bad idea. So the NIH must be scratching their heads. So I don't understand why people are angry about this. I understand why people don't want psycho-babblers involved.

Edit: Sorry, I'm getting confused and talking about the Lyme control group, which I initially thought was a good idea.

I think to possibly make things better they need to have someone who understands the history address patient concerns in a thoughtful, compassionate way. ME/CFS has a unique and troubled history that requires a certain level of sensitivity.
They're scientists, not politicians! I think we just have to work with what's been made available to us. Nath had made himself available to us, so can't we just communicate and work with him? He seems like a decent chap to me.
 
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duncan

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1) A biomedical study that arguably is flawed at the earliest of stages to such a degree as to potentially leave all that high-end testing useless, is a puzzling thing at best.

2) The control groups have been demonstrated to be so ill-defined and controversial as to leave many wondering as to a possible ulterior motive for their inclusion in the first place. They were a pr disaster for this particular NIH effort when first announced, and they remain so.

3) These scientists are people first and foremost. Those that have heard of ME/CFS will likely already be feeling the politics. They may bring with them prejudices and preconceived notions about ME/CFS, just as NIH personnel have with Lyme (and which I experienced first hand). Worse, potentially, one gets the feeling some of them may have been dragooned into volunteering; if that is the case, I imagine at least a portion of those will not be pleased with that brand of "volunteering".

That being said, Nath DOES seem like a decent chap, and hopefully we can communicate and work with him. Let's start by shoring up the patient selection process, and jettisoning the psychobabblers (whose mere presence is an affront and provocation), to ensure the NIH is aiming all that complex, sophisticated and cutting edge technologies at the right patient population.
 
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LiveAgain

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And then he spent the rest of the webinar talking about his incredibly complex, sophisticated and cutting-edge biomedical study.
Yes, this and only this is what it should be about, but they muddied the waters from the start with the psych stuff. If they hadn't, maybe there wouldn't have been the backlash they're now complaining about. Their fault. By the way, I get the impression none of that was his idea. He seems all about real science.

They're scientists, not politicians! I think we just have to work with what's been made available to us. Nath had made himself available to us, so can't we just communicate and work with him? He seems like a decent chap to me.
He's the one who brought up negative patient response so I'm just saying if they don't like it then have someone address these concerns in a sensitive way so patients feel heard and not dismissed. His attempt to do only further alienated many people because of his tone. I trust him fully with the science and was happy to hear about all he has planned - first 3/4 of the webinar.
 

akrasia

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I?
I think to possibly make things better they need to have someone who understands the history address patient concerns in a thoughtful, compassionate way. ME/CFS has a unique and troubled history that requires a certain level of sensitivity. Maybe then the angry e-mails, tweets, blogs, and whatever else will stop.
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They're scientists, not politicians! I think we just have to work with what's been made available to us. Nath had made himself available to us, so can't we just communicate and work with him? He seems like a decent chap to me.
Ian Lipkin, Mady Hornig, Ron Davis, Michael van Elzakker, Jose Montoya, virtually all of our respected researchers and clinicians, even, mirabile dictu Elizabeth Unger and the CDC understand the grounded concerns of m.e. patients. Is there a special cluelessness dispensation for the NIH?
 

Comet

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@Comet, the FMD group would have fallen under that.
No, it turns out that it didn't. At least that is my understanding at this point.

I read here somewhere (too tired to find, because I have no idea which thread) that the reason the FMD group was included was due to something that happens in the brain when tics occur.

Dr Nath wanted to compare what was happening in the brain at the exact moment of the tic to what is happening in the brains of people with ME/CFS. He said it would have been fascinating.

Once I read that, it seemed to me that the FMD group had nothing to do with being a psych group in the least. Had I known this to begin with, I actually would have preferred to leave the group in. But that was only my interpretation.
 

Bob

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Ian Lipkin, Mady Hornig, Ron Davis, Michael van Elzakker, Jose Montoya, virtually all of our respected researchers and clinicians, even, mirabile dictu Elizabeth Unger and the CDC understand the grounded concerns of m.e. patients. Is there a special cluelessness dispensation for the NIH?
Nath is new to the world of ME/CFS (as is the entire NIH) so I think it's a bit harsh to expect him to be an immediate expert in the history and politics of it. He will now be learning about it, and he will meet patients, so I'm sure that his understanding will quickly evolve. With any luck his curiosity might be grabbed, just as Lipkin's was, and then he might set about convincing other NIH researchers what a fascinating field it is. (I can live in hope!) It's widely thought that Vicky Whittemore has a good and sensitive understand of ME/CFS. She seems to have been learning about it for a while now.
 
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Bob

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Dr Nath wanted to compare what was happening in the brain at the exact moment of the tic to what is happening in the brains of people with ME/CFS. He said it would have been fascinating.
I found that interesting as well, but I'm not sure that I was convinced by his reason to include it. Interested, but not convinced.
 

Comet

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I found that interesting as well, but I'm not sure that I was convinced by his reason to include it. Interested, but not convinced.
Yes, it could have been back peddling. I have no idea. But when I read his reasoning about it, I thought that it would have been an interesting comparison.
 
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daisybell

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It would have been interesting I think to see what abnormalities the testing picked up for people with 'FMD' - especially given the search for antibodies, and the scans. At this point in time, I find myself feeling both relieved and perhaps a little disappointed that the FMD group was dropped. I think for the sake of reducing bias for PWME, it's perhaps a wise move, but then again it's just possible that some good might have come out of the study, if not for us then for PWFMD.... The problem with their inclusion for me is that their specialist at NIH is apparently convinced that they have a clearly psychosomatic illness.

They can always be studied as a separate group against the results found at a later date anyway. It would be very good if the 'functional' label ends up being dropped.
 

Amaya2014

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I think to possibly make things better they need to have someone who understands the history address patient concerns in a thoughtful, compassionate way. ME/CFS has a unique and troubled history that requires a certain level of sensitivity. Maybe then the angry e-mails, tweets, blogs, and whatever else will stop.
That's a good point @LiveAgain. Given the history..is there anyone at NIH, particularly within this study, or for on- going dialogue serving as an ME/CFS advocate and/or liaison? Is that something that could be brought up in the dialogue? Perhaps, if money was saved with the removal of FMD cohort or a case could be made for additional funding to have 1-2 persons serve as public relations in fielding these questions and as a direct channel of communication? Part of the role would be providing a quarterly or, if necessary, monthly update?

What do you think @Bob, @viggster, @duncan, @Comet, or anyone with some thoughts/knowledge?
 

akrasia

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Nath is new to the world of ME/CFS (as is the entire NIH) so I think it's a bit harsh to expect him to be an immediate expert in the history and politics of it. He will now be learning about it, and he will meet patients, so I'm sure that his understanding will quickly evolve. With any luck his curiosity might be grabbed, just as Lipkin's was, and then he might set about convincing other NIH researchers what a fascinating field it is. (I can live in hope!) It's widely thought that Annette Whittemore has a good and sensitive understand of ME/CFS. She seems to have been learning about it for a while now.
You have shifted the argument from scientists are not obliged to understand social contexts to the ostensible ignorance of the NIH. Frankly, I don't believe he is ignorant of the politics He knows the rudiments of what happened, conveyed to him, I imagine, by Vicky Whittemore. He knows very well why there were objections to Wallitt and the psychobabblers, he just was not going to address it.

I agree that the NIH has cultivated ignorance as a matter of policy, that's why someone like Wallitt is their go to guy. Any serious consideration of the disease would never have included somebody like him. What were they doing all these years at the CFSAC meetings?


A note on Lipkin: his awareness of m.e. antedates XMRV. It came about when he was investigating the relationship of borna virus to m.e. in Sweden in 1997. At the time he said, and I paraphrase, I don't know what's wrong with these patients, they are not suffering from borna virus, but they are very sick. The reason he didn't pursue research then, I assume, was that there was no interest at the NIH and the larger scientific community and therefore no money. But it's been on his scope for a while.
 
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geraldt52

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Nath is new to the world of ME/CFS (as is the entire NIH) so I think it's a bit harsh to expect him to be an immediate expert in the history and politics of it. He will now be learning about it, and he will meet patients, so I'm sure that his understanding will quickly evolve. With any luck his curiosity might be grabbed, just as Lipkin's was, and then he might set about convincing other NIH researchers what a fascinating field it is. (I can live in hope!) It's widely thought that Annette Whittemore has a good and sensitive understand of ME/CFS. She seems to have been learning about it for a while now.
I know there's been a lot of back and forth and a lot of emotion on this, but I'm not sure this isn't a case where "no doubt the universe is unfolding as it should".

I think that all that's been said needed to be said, and said with all the emotion, the anger, that was felt. And it all needed to be heard by Dr. Nath and everyone involved at the NIH. It is their responsibility to deal with it, as historically the NIH and the CDC are in no small way responsible for it. They need to know that people are angry, and why people are angry. Had they simply paid more attention to the recommendations of the CFSAC, they would have known that people would be angry, and why they would be angry.

I can accept that there will be a learning curve on the part of the NIH...but I see no reason for PWME to "dial it back" until the NIH understands. If Dr. Nath thought Act Up did a positive thing, I can't imagine that he won't see that PWME are merely expressing the same frustrations that drove that movement.
 

duncan

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@Amaya2014 , I think there should be such a liaison at the NIH.

And I will go you one further: I believe there should be at least one ME/CFS patient advocate appointed to participate in a monitoring role. This advocate - and there can be more than one - should have a say in approving each and every patient candidate for study enrollment. They should be part of the entire study process as it unfurls. If necessary, they can be replaced by other advocates as health and time dictates.

ME/CFS patients not only have an undeniable role as study participants, they bring a virtually unparalleled depth of insight into the disease and its many implications. They would prove invaluable as study consultants.
 

Comet

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That's a good point @LiveAgain. Given the history..is there anyone at NIH, particularly within this study, or for on- going dialogue serving as an ME/CFS advocate and/or liaison? Is that something that could be brought up in the dialogue? Perhaps, if money was saved with the removal of FMD cohort or a case could be made for additional funding to have 1-2 persons serve as public relations in fielding these questions and as a direct channel of communication? Part of the role would be providing a quarterly or, if necessary, monthly update?

What do you think @Bob, @viggster, @duncan, @Comet, or anyone with some thoughts/knowledge?
Just to be clear, I have very few thoughts these days... and even less knowledge. :rofl: :) Thank you, though.

But isn't a patient liaison already in the works, or am I remembering wrong?

I thought someone made a summary of Dr. Nath's webinar toward the beginning of this thread, which might have mentioned it, but I just scrolled through the first several pages and couldn't find it. However, I am feeling particularly brain dead at the moment.