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

[waiting]

Someone wise (who has been in the ME "trenches" for a long time) suggested we (patients, gov researchers, DRs) might need a "truth & reconciliation" process after our shared history.

Maybe it was said in jest, but boy, I think we do need something along those lines!

There is antagonism on both sides. I hope we can overcome it collectively, somehow...

 

[Valentijn]

"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”.

The names being scrutinized in a negative manner are blatant psychobabblers, many of whom have engaged in questionable research practices in the past. We are better off without them - they are indeed the people we don't want on the study or coming anywhere near ME.

I don't think it's accurate to equate such scrutiny with a broad campaign against the NIH, or its researchers, and certainly not with hate mail. It's valid criticism of individuals based on their published work. If we can't object to them for those reasons, we might as well invite Wessely, Chalder, and White to join the team for good measure.

 

[akrasia]

Really, it strains credulity to think that scientists at the NIH have not been influenced by the climate of contempt and neglect in which M.E. exists: institutionally, as well as individually, they are both agents and progenitors of this environment.

The accusations often move from complaints about receiving nasty or obnoxious emails to objections to general critical discussion accompanied by the demand that we accept narratives emanating from the very institutions that have engendered the catastrophe. Pray, where were these people and institutions say circa 1987 and onwards when there was no "vocal minority or vocal patient groups."

I watched the Ken Burns documentary on Jackie Robinson the other night. A leitmotif of the program was the complaints by people in power that African Americans had undermined their claim on civil rights. If you live long enough, and are sympathetic to or possess marginal social identities, you hear this whine of power again and again. Angry Black people, Angry Shrill Women, Angry Gay People wanting special treatment, Angry people with disabilities also wanting special treatment, Angry People with AIDS, and now Angry People with M.E.

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.

From Cort's blog:

"He suggested that patients “be a little careful” about how critical they become for fear of antagonizing people who might not end up helping. The criticism of Brian Walitt and perhaps Dr. Saligan, Gill and even Dr. Unger has apparently gotten around, and it’s had the unintended effect of making some of the researchers we do want working for us leery of doing so."

And just this in general addressed to those of you who are organizing the #millionmissing theme of the upcoming demonstration. Why have we disappeared? Were we raptured? Were we kidnapped by pirates?

Francis Collins said:

“Give us a chance to prove we’re serious, because we are,”

http://www.sciencemag.org/news/2015/10/nih-refocuses-research-chronic-fatigue-syndrome

We'll see. But as I've said before, Collins's statement is a confession of a lack of serious attention from the NIH towards this disease. What goes unstated is the temporal dimension and a lack of urgency constantly communicated by DHSS. This is the beginning of my 29th year with this disease. Another 3 years means a lot of us will move further into old age and its horrors and frailties.

Finally, compare this tweet and its spirit to Avi Nath's performance:

https://twitter.com/i/web/status/712345900345987072

 

[BurnA]

We don't know enough to speculate the background to Naths comment but its worth remembering that any scientist working in the NIH would relate a lot more to a fellow scientist than to an angry patient.
If word was going around that some scientists were receiving hate mail most people would sympathise with them and the first reaction is probably - I don't want any of that. Its human nature.

Regardless of how valid anything may seem we have to ask ourselves how smart is it, or is their a better way.

We have an opportunity here, even if one top scientist could contribute but decides they would rather not, we are the losers.

Nath's comment shouldn't be viewed as criticism but as honest feedback.

(My impression is that Nath doesn't know enough about this disease to even begin to know anything about the history of it. I'd probably even extend that to most people working in the NIH, and I don't have a problem with that if they are willing to help me get better)

It doesn't mean we forget the past, it doesn't mean we keep quiet about the past, it doesn't mean we can't criticise the present, but we do it in a coordinated way that doesn't alienate the very people who can help us get better.

 

[akrasia]

We don't know enough to speculate the background to Naths comment but its worth remembering that any scientist working in the NIH would relate a lot more to a fellow scientist than to an angry patient.
If word was going around that some scientists were receiving hate mail most people would sympathise with them and the first reaction is probably - I don't want any of that. Its human nature.

Regardless of how valid anything may seem we have to ask ourselves how smart is it, or is their a better way.

We have an opportunity here, even if one top scientist could contribute but decides they would rather not, we are the losers.

Nath's comment shouldn't be viewed as criticism but as honest feedback.

(My impression is that Nath doesn't know enough about this disease to even begin to know anything about the history of it. I'd probably even extend that to most people working in the NIH, and I don't have a problem with that if they are willing to help me get better)

It doesn't mean we forget the past, it doesn't mean we keep quiet about the past, it doesn't mean we can't criticise the present, but we do it in a coordinated way that doesn't alienate the very people who can help us get better.

Sorry, this does not address my point about the climate in which these scientists approach the disease, the preexisting, often unconscious or semi conscious bias their identifications with each other bring to the table. The bar of possible alienation of one or a handful of researchers is an impossible standard to meet unless you are prepared to censor your fellows. Patient fora are valuable precisely because they permit the expression of a spectrum of opinion. Just as I wouldn't suggest that anyone of more mild disposition censor themselves. I and others demand the same prerogatives.

I have, as you probably can imagine, very little sympathy for the alienation argument, or the gratefulness argument. These people are obliged to do their jobs. If they cannot see a way of serving a serious disease they should leave the field of public health. The idea that we can speak with one voice is unrealizable and not desirable.

As I've said elsewhere, we are citizens not supplicants.

 

[duncan]

This all sounds uncomfortably familiar with what Wessely and White and Company claimed happened in the UK.

Will we be accused next of being vexatious?

Why don't the NIH investigators focus on resolving the weaknesses and risk factors associated with the proposed NIH study - factors that have been discussed at length on this forum - instead of bellyaching about some alleged fringe emails? I am not condoning any such emails if they happened. But let's try to keep things in perspective. As I said before, it's a world of hurt being deliberately ignored for three decades with a catastrophic disease, growing sicker and more disabled, strangers and friends alike viewing us with contempt, marriages and family relationships ruined, lives lost.....

I am sorry for their inconvenience at being exposed to the sounds of pain and desperation. But I hope they can endure and be able to do their best regardless.

 

[Sasha]

These people are obliged to do their jobs. If they cannot see a way of serving a serious disease they should leave the field of public health.

But a lot of these scientists don't have working on ME/CFS as their job: Dr Nath is approaching them to volunteer their time on top of the jobs they're contracted to do. They're already working on other (presumably often serious) diseases.

 

[TiredSam]

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."

Is antagonistic the new vexatious?

By "the very people you want to help" I assume he means the millions of ME sufferers. And by antagonistic I assume he means the few cranks sending rude emails. Why is he treating the two as the same? Why would anyone who wants to help millions of ME sufferers expect them to pay the price for a few crank emails? Drag them to the trashcan and stop banging on about it to the millions of sufferers who disapprove of it and have nothing to do with it.

If I have a group of 20 students and only 10 come to the lesson, there's no point in me giving a lecture about punctuality, personal responsibility and respect to the 10 who came, they've done nothing wrong and are sitting there, wishing I would get on with the lesson and stop giving them the telling off due to their 10 absent classmates. By the same token, why is so much PR time being wasted on this email business, when there is no evidence that anyone at PR has sent one? Press reply and complain to the sender, or drag it to the trashcan. I'm sick of hearing about it.

And I certainly hope that raising legitimate concerns about Walitt & Co doesn't fall under the definition of "antagonistic".

 

[Bob]

I think people are just saying that there's a balance to be struck, which falls between (on the one hand) protesting so vehemently that it has the potential to drive away the best researchers so we get left with nothing, and (on the other hand) not raising any concerns at all which might also have left us in a very bad situation. People will always disagree about where the balance should fall, and that's where the bulk of our community's differences are usually focused.

There is a legitimate concern that we have the potential to upset the best researchers so much that they refuse to actively engage with ME research. On the other hand, I recognise the historic problems, and I understand why people are (rightly, in my opinion) wary, suspicious and indignant that things should be done right. I find it difficult to condemn any style of activism because we simply don't have a track record of success in our field to use as a gauge for future actions. My nature usually brings me down on the side of positive and constructive encouragement and engagement, but I don't think I have any sort of special insight about what has brought us the biggest gains in our field. I think bringing about systemic change, via the power of the people, can take a bit of every kind of activism and pressure.

On the other hand, I think that the P2P project, the IOM project, and this NIH study may have been seeded from a single piece of activism: and that's Courtney Miller asking a question to Obama in person, which may have been the most successful single piece of activism that we've ever seen in our community, in terms of influencing government policy/actions. All the action from the NIH seemed to start from that point. (Not to take anything away from, or to belittle, the enormous amount of work that many others have done, and do. And no single piece of activism can work in its own - it's taken decades of action by very many capable people to get where we are today.)

I have got strong opinions about the NIH project - I think it's the biggest opportunity we've ever had - and the more I hear about the methodology, the more impressed I become. I think Nath is honest, candid and eager to engage, and to do the best quality biomedical research. He's voluntarily engaging with us - he's not being secretive. I don't think we can expect much more. His ambitions seem sky-high - the tests he wants to run sound fascinating, cutting-edge, and very complex. And they are making use of the wide range of experts and specialists at the NIH. He's looking for clues and will follow them. And the study will cost many millions - my estimate is in the region of $20m for all three phases of the study. I'm deeply impressed by nearly all of it.

One thing about human nature, is that all of us like to be praised when we are doing something right. And if we aren't doing something right, but we think we are, we like to be encouraged rather than condemned. So I urge anyone writing to the NIH to remember to praise the positive aspects of the trial and not simply condemn the negative aspects. Just my opinion, of course, but I think encouragement should be given when it's earned. So I urge anyone contacting the NIH to remember to thank them for the good parts of this project.

 

[Roy S]

On the other hand, I think that the P2P project, the IOM project, and this NIH study may have been seeded from a single piece of activism: and that's Courtney Miller asking a question to Obama in person, which may have been the most successful single piece of activism that we've ever seen in our community. All the action from the NIH seemed to start from that point.

That's what I've been thinking.

 

[akrasia]

On the other hand, I think that the P2P project, the IOM project, and this NIH study may have been seeded from a single piece of activism: and that's Courtney Miller asking a question to Obama, which may have been the most successful single piece of activism that we've ever seen in our community.

Proof? My theory is that the science, e.g.in the form of people like Fluge and Mella and the addition of M.E. to Ian Lipkin's bucket list, is catching up and starkly contrasting with the official policy of delay and know nothingism. Lipkin can't be marginalized.

This is not about human nature. If the disease had been seen as serious it would have been studied. It sounds to me as if most of these people feel that the yield from examining m.e. will be negligible and not worth the effort. The concern about emails and what goes on PR is a smokescreen for their reluctance. Imagine if they thought as Montoya has suggested that studying M.E. is a great intellectual adventure with credit and glory for those who undertake it.

And speaking of Montoya, feeling we have to manage and massage these NIH researchers into considering the disease, does a great disservice to his courage and to the courage of our clinicians and other researchers who have taken career risks to work in research or with patients. In the end, I don't think our critical or positive opinions play much of a role in this shift of policy.

It was clear from Nath's tone that he was not going to address the legitimate disquiet felt by a lot of people about the presence of Wallitt et al. Dismissing concerns expressed by patients by comparing it to vetting a researcher into AIDS for homophobia was a poor analogy. Surely, he should have realized this question would arise, but that would have required him to have some sense of context of the disease. HIs refusal was a sign of contempt not honesty.

When the details of the project were first announced I thought it had merit. It wasn't the second coming but a gesture towards a saner NIH policy with regard to m.e. These scientists who need courting should be operating under the assumption that they are embarking on a project of righting a great wrong. That is reason enough to work on it.

 

[duncan]

"He is voluntarily engaging us..." This is a fair point, @Bob.

He is also voluntarily discarding sincere, and most likely, accurate concerns we have about the study architecture. He is voluntarily associating a miniscule, fringe, overwrought element of pwME with an entire large population - the size of a major city - and for some bizarre reason, thinking we have control over anyone of them. He seemingly is voluntarily ignoring the history and political underbelly of both the CDC's and NIH's previous "treatment" toward pwME, whose only known medical rival indifference that affected so many in such a grotesque and dehumanizing way, may be HIV - and if anyone should be familiar with the upheaval and angst and rage associated with HIV, I would imagine he would, given his expertise in retroviral research. He is also voluntarily allowing three medicals in influential roles with avowed psychobabble inclinations to remain as final gatekeepers for who gets into the study.

Now, I appreciated his candor and no-nonsense style.

I also appreciated his voluntarily referencing us as part of a team, a joint team of patients and investigators. So I am giving him credence for meaning what he says. Treat this community like we are part of the team.

Take away that absurd FMD control that never, ever should have been there to begin with, and how has he treated us as team? We got an update and a talking down to. We got a reprimand for something completely out of our control.

What we didn't get was action on our recommendations and concerns.

 

[BurnA]

Why would anyone who wants to help millions of ME sufferers expect them to pay the price for a few crank emails?

These people are obliged to do their jobs. If they cannot see a way of serving a serious disease they should leave the field of public health

There seems to be a thought process here that the scientists in the NIH want to help or are obliged to help ME patients get better.


'These people' all have their own lives, their own families and friends. They go to work everyday so they can get paid and enjoy their time off. Just like most people in the world.

Just like everyone who works for big pharma doesn't do it because they are helping sick people get better, the scientists in the NIH have other goals too. Sure, in the back of their mind they might have a satisfaction of thinking that what they do may someday help some people have a healthier life, it's unlikely this is their motive for going to work everyday.

Most are probably curious people with a penchant for solving scientific problems, the same way computer geeks like solving computer problems. They get a buzz out of it and they get paid for it.
Whether it's ME or MS or Zika, it probably doesn't matter a whole deal to them.

 

[BurnA]

these scientists who need courting should be operating under the assumption that they are embarking on a project of righting a great wrong. That is reason enough to work on it.

I wish you'd stop referring to them as 'these scientists'

As I mention in my previous post the scientists working on this project probably have no idea of the history and this doesn't matter a bit as far as this study is concerned. They are not righting a wrong, they are going to work everyday so they can can get paid so they can enjoy their lives. Like most people.

If the NIH want to right a wrong they should increase extramural funding.

 

[halcyon]

There is a legitimate concern that we upset the researchers so much that the best people refuse to actively engage with ME research.

Do you think it's OK that employees of a publicly funded research body can refuse to work on our disease simply because someone received a handful of nasty emails? And what do you propose that we as patients do about it? Are we supposed to somehow track down and silence these bad actors? How? What purpose does it serve for Dr. Nath and @viggster to keep bringing this up, as if there is something that any of us can do about it? All it does is add to our guilt and feeling of helplessness. I'm sick of having people hold their help above our heads, threatening to snatch it away if we don't find a way to somehow suppress the people sending nasty emails/tweets.

 

[Bob]

He is also voluntarily discarding sincere, and most likely, accurate concerns we have about the study architecture. He is voluntarily associating a miniscule, fringe, overwrought element of pwME with an entire large population - the size of a major city - and for some bizarre reason, thinking we have control over anyone of them. He seemingly is voluntarily ignoring the history and political underbelly of both the CDC's and NIH's previous "treatment" toward pwME, whose only known medical rival indifference that affected so many in such a grotesque and dehumanizing way, may be HIV - and if anyone should be familiar with the upheaval and angst and rage associated with HIV, I would imagine he would given his expertise in retroviral research. He is also voluntarily allowing three medicals in influential roles with avowed psychobabble inclinations to remain as final gatekeepers for who gets into the study.

He is a single employee at the NIH. And he's simply a scientist. So I think it's possible to expect too much from him. As I said earlier, I think encouragement rather than condemnation would be the best way to interact with someone like Nath, who has shown willingness to listen, engage and compromise, and to take ME seriously by designing a comprehensive biomedical study into ME.

 

[BurnA]

Do you think it's OK that employees of a publicly funded research body can refuse to work on our disease simply because someone received a handful of nasty emails?

The world isn't as black and white as you'd like. Most people have a choice to some degree over what they work on. That's life and its what makes working everyday from 9-5 interesting.

And what do you propose that we as patients do about it?

This is what we should be trying to establish, singling out Nath or @viggster is unfair, they are the messangers, if you dont like what you hear its not their fault.

 

[halcyon]

The world isn't as black and white as you'd like. Most people have a choice to some degree over what they work on. That's life and its what makes working everyday from 9-5 interesting.

The NIH has a duty to serve unmet public health needs in this country. That is what our tax dollars pay them for. I've worked in this grey world you speak of. I didn't always enjoy or agree with the work that my bosses gave me, but I had the choice to do the work or find another job. If Collins is truly serious about this disease, he has the ability to bring adequate resources to bear, and if these people don't want to touch us, the modern day lepers, then they should be shown the door.

This is what we should be trying to establish, singling out Nath or @viggster is unfair, they are the messangers, if you dont like what you hear its not their fault.

It was mostly a rhetorical question because I don't believe there is anything we can do about it. Maybe if we lived in North Korea we could send the government after these people and they could disappear them, but thankfully we don't and we live in a country with free speech.

 

[Bob]

Do you think it's OK that employees of a publicly funded research body can refuse to work on our disease simply because someone received a handful of nasty emails?

Yes, I do. I don't know what sort of emails they've received, but if they've received nasty or hateful emails then that can cause people stress and other mental health problems. At the end of the day, it's a job, and they can work elsewhere if they want to. But it doesn't matter what I think, or how they should behave - it only matters how they react to the emails in reality. But that's not to say that I'm condemning critical interactions with the NIH.

And what do you propose that we as patients do about it? Are we supposed to somehow track down and silence these bad actors?

I don't think we can do much except to discuss these things amongst ourselves. We've had some heated debates between ourselves, and I don't see much harm in that. Expressing our opinions and airing our differences makes us all wiser. Some people are criticising the NIH, and others are criticising those people for criticising the NIH, and those who are criticised for criticising the NIH are criticising the people criticising them!

What purpose does it serve for Dr. Nath and @viggster to keep bringing this up, as if there is something that any of us can do about it? All it does is add to our guilt and feeling of helplessness. I'm sick of having people hold their help above our heads, threatening to snatch it away if we don't find a way to somehow suppress the people sending nasty emails.

I see your point. I agree that there's very little, or nothing, we can do about people sending nasty messages, if that has happened. That's why I tend to stay out of these discussions. All we can do, as individuals, is engage constructively, if we are inclined to.

Halcyon, I understand the feelings of guilt and blame and helplessness. But you are with friends here, and we're all in the same boat. You shouldn't feel guilty because other patients are expressing their opinions. We're all on the same side, but we have different ways of going about things. I don't usually engage in these discussions about the NIH because I personally find the persistent negative attacks on the NIH very demoralizing and draining. That's not to say that I don't think people are raising valid points. But the negative discussions upset me, so I usually stay away. My philosophy is that I can't have any meaningful impact on events as a single individual, so I'll just do my bit, and events will take their own course. What will be will be. The community will find its way in the end. We move forwards together in messy fits and starts, but we are moving forwards. Always good to take a step back to think about how far we've come over the past five years.

 

[viggster]

The NIH has a duty to serve unmet public health needs in this country. That is what our tax dollars pay them for. I've worked in this grey world you speak of. I didn't always enjoy or agree with the work that my bosses gave me, but I had the choice to do the work or find another job. If Collins is truly serious about this disease, he has the ability to bring adequate resources to bear, and if these people don't want to touch us, the modern day lepers, then they should be shown the door.

Again, I think you're conflating the institution & the individual. Yes, NIH as an institution has an obligation to study our illness. I have vociferously argued that point in a very public way. But *no* individual at NIH has an obligation to study our illness. As Nath said during the webinar, we - and he- cannot force individual scientists to work on ME. They have to want to. Now, of course there are power relationships inside NIH, and when Dr. Collins asked Dr. Nath to be PI of the new study, Dr. Nath may have felt that "no" was not a wise answer. I don't know. I'm speculating. Senior scientists at NIH, in particular, have a lot of leeway in what they study. If they feel like studying ME is going to land them a lot of grief and nasty emails, they may decide it's not worth it.

Why am I bringing it up here? Because I felt the earlier part of this thread was a very unfair representation of the webinar. There were a lot of positive things (in my view) in the webinar, and yet the thread was focused on what some people viewed (unfairly) as Dr. Nath's bad attitude. It felt to me like a continuation of behavior I've seen in some quarters that will take any and every opportunity to dump on the people at NIH who have chosen to launch a new ME program. A lot of positive things about the webinar were ignored.

For instance, no one on this thread mentioned that Dr. Nath said NIH is setting up a patient advisory committee for the extramural ME work in progress, and he will probably use those same people to advise on the intramural study. That sounded like positive news to me.