NIH intramural research program update

[Bob]

Hillary and many others disagree with the way NIH has been communicating. It is not professional and it is most confusing. She and others have a right to express their views.

Nielk, I said the same earlier: "Hillary is entitled to express her opinions". I don't think anyone has said otherwise. But you seem to be saying that people don't have the right to defend themselves from perceived public insults?

 

[Aurator]

https://twitter.com/i/web/status/660938654072872961

I'm not sure I'd be too happy to be on the receiving end of that one; that's three slights (Hey "spare a dime" guy (onset 2012), suck up to Collins all you want but NIH has zero cred unless yr a newbie) in one Tweet.

I applaud Hillary Johnson's not being "ashamed of being angry", but she's causing collateral damage with the way some of it is being directed.

 

[Snowdrop]

We all want this to work with the NIH. If we can get some good solid research from this we are headed in the right direction.

That can't happen if there is only continual shouting with regard to what is still wrong with their approach (and I'm on record that the intramural study as it stands needs fixing) We do need to leave space open for them to fix things in good faith--while being vigilant. In my opinion it can't be supposed with certainty that there is no political will at all to change. We need to consider that the NIH is a huge labyrinthine megastructure and as such it really does take time to enact any changes in a thorough way. Not to mention normal business practice between various groups often is poor communication as the norm.

It is already long past any timely response to the ME community and therefore immensely frustrating. But we must give them an opportunity to respond. Again, not letting down our guard--being vigilant and willing to engage with whatever follows--and shout if necessary.

I don't see any particular advantage to the infighting. Having said that--if indeed there are people who inexplicably toady to forces we've been fighting then they should be called out--being prepared to either have proof in hand or be possibly wrong--in which case an apology should follow.

Add: I don't see Viggster as toadying--just because he differs in opinion on how to proceed.

Edit to add: We all know history is important generally and specifically when assessing any contemporary issue. Without it we are left somewhat adrift in assessing what's going on.
It educates us.

What is often overlooked is the equally true concept that having a good grasp of the history of a thing can and sometimes does weigh us down. If one only responds to an issue because of the history conflict never gets resolved. That is historical reality also.

Change happens all the time. It often happens slowly--then suddenly like a tectonic shift.
We are still in the slowly stage.

 

[mango]

NIH’s lack of transparency and their overall weak and confusing communcation is definitely a massive problem at the moment (and historically as well).

A very cynical way of interpreting this current mess would be to point out that this could be something NIH is doing purposefully in order to create confusion, divisiveness and conflict among our community, in an attempt to weaken us as a group, weaken our chances to do effective advocacy.

I personally don’t believe it is, but I can totally see why some people would see it that way.

Here’s a list of things:

* No official sources of reliable information
* No established communication channels, no established forms of two-way communication
* Telling a little, leaving out a lot
* Telling little, too late
* Retracting or denying what has previously been stated (quietly, without explanation)
* Favouring a few people while leaving others in the dark
* Telling different and/or conflicting things to different (groups of) people
* Incomplete or unclear info that will easily lead to false conclusions
* The only available info is (at best) second-hand partial reports published in various unofficial places, often without known or identified sources = impossible to verify, not easily debunked
* The so-called facts keep changing (no explanations, no advance warnings given)
* Destroying the morale of groups
* Revealing part of the truth while presenting it as the whole
* Etc, etc, etc…

The things listed above are examples of what is often taught in crisis management communication courses, when dealing with for example certain situations of war or terrorism where (enemy) disinformation and tactical deception might be a risk. All the above are common things to look out for and take into consideration in such situations.

Please note! There’s a big difference between disinformation and unintentional misinformation. This is in no way meant to suggest a conspiracy, bad intent or somesuch! It’s just a random thought that crossed my mind, and I couldn’t help noticing the similarities.

I think it’s very important for us as a group to be aware of the risks of weak communication and what it can (unintentionally) lead to.

I would love to see our community collectively and consciously choose to not let issues like these create divisiveness or infighting, not let it make us lose our focus on the real issues.

 

[Sasha]

I would love to see our community collectively and consciously choose to not let issues like these create divisiveness or infighting, not let it make us lose our focus on the real issues.

 

[BurnA]

The things listed above are examples of what is often taught in crisis management communication courses, when dealing with for example certain situations of war or terrorism where (enemy) disinformation and tactical deception might be a risk. All the above are common things to look out for and take into consideration.

Somehow I dont think there is any fear things like the above would go unnoticed

You say your post is not meant to suggest conspiracy or bad intent but you mention war on terrorism and talk about enemy tactical deception. I am confused, it's kind of hard to interpret any other way, what are you suggesting ?

 

[mango]

You say your post is not meant to suggest conspiracy or bad intent but you mention war on terrorism and talk about enemy tactical deception. I am confused, it's kind of hard to interpret any other way, what are you suggesting ?

i'm sorry that i'm not able to express myself more clearly.

what i was trying to say is that weak communication skills can unintentionally cause similar effects/results as intentional disinformation [ETA: for example confusion, divisiveness, conflict, doubts, loss of morale, apathy, suspicion, loss of confidence, rumour-mongering, frustration, anger, distrust etc]. i believe it is very important for everyone to [ETA: be aware of these potential consequences, and to] know the difference, be able to tell the two apart.

it's in our own power to choose how we will respond to this situation, and what we focus on. divisiveness and infighting is unhelpful and can be avoided.

 

[Snow Leopard]

NIH’s lack of transparency and their overall weak and confusing communcation is definitely a massive problem at the moment (and historically as well).

I'd more likely blame incompetence and organisational culture (scientists don't like being told what to do!).

I wonder why some at the NIH pretend that they have never heard of "Nothing about us without us".

I would love to see our community collectively and consciously choose to not let issues like these create divisiveness or infighting, not let it make us lose our focus on the real issues.

Agreed. Our community agrees on the central issues more than we might think based on recent events, it is just that many are frustrated, angry, distrust etc. No social movement is clean and although we may agree that some are not helping, we shouldn't pretend that we can or should control everyone.

Nor pretend that such frustration and anger and even violence isn't common in other social movements.

What we need is better communication, ties and foremost, leadership and trust within the community.

 

[Sasha]

Has this been posted?

http://solvecfs.org/NIH-Study?utm_c...l&utm_source=facebook.com&utm_campaign=buffer

The Solve ME/CFS Initiative held a phone call with Vicky Whittemore, Ph.D., of the National Institutes of Health yesterday regarding our concerns over staffing of the NIH’s new intramural study on ME/CFS.

Specifically, our organization is concerned about the appointment of Dr. Brian Walitt, who is the Lead Associate Investigator on the study under the leadership of Principal Investigator Dr. Avi Nath. As other advocates have reported, Dr. Walitt has made public comments regarding his belief that ME/CFS and fibromyalgia are psychosomatic. Dr. Whittemore was very receptive to our strong opposition to Dr. Walitt’s participation in the study, but said that she has no role in the study design or staffing; that rests with Dr. Nath.

The Solve ME/CFS Initiative urged proactive patient participation in the study to avoid similar missteps and ultimately prevent bad science and the waste of taxpayer dollars. Dr. Whittemore said that the NIH is now actively exploring ways to integrate patients into the study to the full extent that it is allowable and legal. Whittemore said that they have identified three avenues for patient feedback so far:

1. Include an open period during each Trans-NIH Working Group meeting in which patients can ask questions and offer their feedback;

2. Include advocates on the smaller working groups created in conjunction with the study; and

3. Hold regular teleconferences throughout the study so that community members can receive updates on progress from the investigators themselves. The first conference call is expected to be announced this week.

In other updates, Whittemore said:

• In a follow-up email responding to our question regarding the cost of the intramural study, Whittemore responded: “We don’t yet know what the cost will be because they are still revising the protocol. NIH will spend whatever is necessary for this study to get answers to some basic questions about the clinical and biological characteristics of ME/CFS. Any taxpayer dollars spent on this study will be in addition to use of the unequalled resources and facilities of the NIH Clinical Center.”
• The NIH would be providing updated responses to the Chronic Fatigue Syndrome Advisory Committee recommendations from last fall. At the time NIH responded to the CFSAC recommendations, the Trans-NIH Working Group had not yet been formed, so the NIH’s responses were based on limited information. The updated responses could be available as early as next week.
• The NIH is developing an outline of research strategies and initiatives, which will be reviewed by Dr. Walter Koroshetz, director of the National Institute of Neurological Disorders and Stroke, and the entire Trans-NIH Working Group. Whittemore said the outline will be shared with the ME/CFS community as soon as it’s final. “I think you’re really going to be happy with what we’re planning,” she said.
• The NIH is currently looking for funding for the initiatives in the Fiscal Year 2016 budget since no NIH Institute has set-aside dollars.
• She, Dr. Koroshetz and Dr. Collins remain committed to research regarding ME/CFS.

Solve ME/CFS Initiative President Carol Head will continue to raise the concerns over Dr. Walitt when she meets with NIH officials in D.C. on March 8 along with fellow advocate Mary Dimmock.

 

[jimells]

All peace processes require a leap of faith at some stage. It takes courage on both sides to accept that.

We don't need a peace treaty with NIH. We need them to do their job, which is to support and fund proper research by competent researchers at levels appropriate to the disease burden. That is not happening, and there is precious little sign that it will happen under the current leadership, besides vague declarations.

@Nielk when ME Advocacy first called for cancelling the clinical center study in its current form (correct me if I have mis-characterized their position) I thought maybe that was going to far. But the more I think about it, the more convinced I am that this sow's ear can not be turned into a silk purse.

Since Ron Davis already has a study in progress that sounds similar to the advertised goals of the NIH study, I think we would be much further ahead if the clinical center money were to be sent to OMF.

Of course, no one has any idea how much money that could amount to, since NIH has claimed this study doesn't even have a budget. How can a presumably multi-million-dollar study over an extended length of time not have a budget? My local town manager can't buy a paper clip without knowing the cost and what account will pay for it, but NIH has an unlimited budget for this study at the same time they are always crying poverty about funding extramural research.

With no predetermined budget, does this mean if the investigators run up a 100 million dollar tab, it will simply be paid? Of course not. So there is a limit of some sort. Otherwise, why not study 400 patients instead of 40?

And where did this idea for a Clinical Center study come from in the first place? Perhaps I have simply missed it, but I don't remember that there has ever been a call for this from the patients. If someone had wanted to throw a stink bomb into the middle of the patient community, this half-baked study would be perfect. I can think of nothing more divisive than this mix of psychobabblers and genuine researchers. The CMRC in the UK has a similar mix of Wessely School babblers and actual experts, and it is similarly divisive and controversial.

 

[RustyJ]

I wonder who she is referencing in this tweet ?

https://twitter.com/i/web/status/659866959421546496

I've long appreciated how the NIH helps the world. My career began there in 1998, when Paul van Nevel hired me for a science writing fellowship at the National Cancer Institute. I count your communications director John Burklow among my mentors, and I was honored to write Paul's obituary. That first boost of professional success propelled me to an exciting career.

https://www.washingtonpost.com/news...ollins-im-disabled-can-nih-spare-a-few-dimes/

 

[RustyJ]

https://twitter.com/i/web/status/659869101557334017

 

[jimells]

We need to consider that the NIH is a huge labyrinthine megastructure and as such it really does take time to enact any changes in a thorough way.

And yet when it was time to disprove XMRV, all the institutional barriers disappeared in an instant, and money was no object.

 

[jimells]

The NIH is developing an outline of research strategies and initiatives, .... Whittemore said the outline will be shared with the ME/CFS community as soon as it’s final.

Are these people completely blind, deaf, and brain-dead? How many times do we have to scream

WE DEMAND TO SEE THE DRAFT -- B E F O R E IT IS FINALIZED

 

[RustyJ]

BTW, I don't consider that Brian did reveal that he was a NIH Press Officer (public relations officer) in his letter, and can't find any reference to where he did. Perhaps someone could point me in the right direction? Just to clear up the conflict.

 

[Kati]

BTW, I don't consider that Brian did reveal that he was a NIH Press Officer (public relations officer) in his letter, and can't find any reference to where he did. Perhaps someone could point me in the right direction? Just to clear up the conflict.

@viggster is first and foremost a ME patient. His connections to NIH and journalism community have helped us greatly in the fall. i am thankful for him to use his connections in order to move the field forward.

Thank you Brian.

 

[jimells]

@viggster I am sorry to see Hilary Johnson attacking you on Twitter. I wish she would stop already - it is not helpful.

Personally I appreciate your connection to Dr Collins. I am a pragmatic person and I fully understand that back channels and cutting across the organizational chart is how things actually get done. I am in favor of sending loud unmistakable messages, not harming messengers.

 

[Ecoclimber]

BTW, I don't consider that Brian did reveal that he was a NIH Press Officer (public relations officer) in his letter, and can't find any reference to where he did. Perhaps someone could point me in the right direction? Just to clear up the conflict.

Perhaps if you clicked on the link above where you posted and actually read the article, you will find the information in the letter.

I've long appreciated how the NIH helps the world. My career began there in 1998, when Paul van Nevel hired me for a science writing fellowship at the National Cancer Institute. I count your communications director John Burklow among my mentors, and I was honored to write Paul's obituary. That first boost of professional success propelled me to an exciting career.

 

[Ecoclimber]

And yet when it was time to disprove XMRV, all the institutional barriers disappeared in an instant, and money was no object.

Not so. Certain person to remain anonymous, screeched out we got a plague on our hands affecting the entire blood supply of the country so of course a ton of money would be released not only to confirm the replication but to make sure the blood supply was safe. No conspiracies that's on another forum.

 

[RustyJ]

Perhaps if you clicked on the link above you in which you posted and actually read the article, you will find the information in the letter.

Perhaps if you look a little further up the thread you will see I have quoted two of Brian's comments regarding his stay at NIH, and in my opinion they do not reconcile, which is why I asked for other references.