NIH intramural research program update

[Michelle]

I'm still unhappy with the presence of Wallit and others but see it more in the perspective of "jobs for the boys." It's Buggins turn. https://en.wikipedia.org/wiki/Buggins'_turn

He's an artifact of a failed policy, one of systematic neglect and trivialization.

Yes! Precisely. Thank you for providing a concise way of explaining something my slow brain has been struggling to put into words. That is exactly what Wallit is.

I keep feeling in this "debate" that many woefully misunderstand how a vast bureaucracy with a politically-appointed head (i.e. here today, gone tomorrow) works, though @viggster has been trying his damnedest to provide such context. Collins is not our problem and genuinely does seem to want to help us despite the abuse he's been getting from a small but determined group within our community for a few years now. He is not a dictator. He does not snap his fingers and his will is done. He does have a lot of power but also a lot of vulnerabilities. Its the vast middle of the NIH that stays while directors come and go that is far more problematical and of which Wallit, Gill, and others listed represent. They can do a lot of obstructing and foot dragging regardless of what the director wants (and even lead an insurrection if there are enough of them and they think he's way off base). Moreover, when you add in all the many many many petty turf wars and battles for resources for each pet research field, it becomes extremely complicated -- way beyond some sort of mere trying to stick it to those "crazy chronic fatigue patients." We are but one tiny piece in one tiny complex machine among many little complex machines inside one ginormous complex machine.

BUT, that said, I'm glad @medfeb will be with Carol Head in meeting with an NIH rep. She can provide NIH with plenty of context about why our concerns regarding Wallit, Gill et al. as well as the use of FMD patients as controls are so vehement and relevant.

I have no problem giving NIH hell for what they've done and not done for the last 30 years. But, you know, it helps to have some perspective at where precisely to fire the (metaphorical!) torpedoes.

 

[viggster]

Collins is not our problem and genuinely does seem to want to help us despite the abuse he's been getting from a small but determined group within our community for a few years now. He is not a dictator. He does not snap his fingers and his will is done.

Yes, Collins has given marching orders to NINDS and others at NIH. He is definitely not the problem.

 

[Nielk]

Collins is not our problem and genuinely does seem to want to help us despite the abuse he's been getting from a small but determined group within our community for a few years now.

I wonder if you can back up this accusation of abuse that Collins has been getting from a group in our community? This is a pretty serious allegation. What do you consider abuse? Sending e-mails asking fro more NIH funding? Signing petitions? Sending out some tweets?

 

[BurnA]

I wonder if you can back up this accusation of abuse that Collins has been getting from a group in our community? This is a pretty serious allegation. What do you consider abuse? Sending e-mails asking fro more NIH funding? Signing petitions? Sending out some tweets?

I wonder if you might be able to back up your accusations :

I personally was attacked for remarking that the way the NIH is communicating in bits and pieces with individuals is wrong. No one expressed outrage at that. I was publically laughed at for my stand

What do you consider attack and publically laughed at ?

 

[Nielk]

I wonder if you might be able to back up your accusations :



What do you consider attack and publically laughed at ?

If you show me yours, I will show you mine.

 

[jadam914]

Yes, Collins has given marching orders to NINDS and others at NIH. He is definitely not the problem.

I disagree, if he knows there is a problem with the lead investigator and does nothing about it he is part of the problem. Regardless of weather some one else appointed Walitt. I think there is a problem, nothing excuses Walitt's wording on FM and ME. Even if he really believes there is a physiological component he obliviously thinks there is a large psychiatric component and should be discredited like a "holocaust denier". Besides who appointed him? Maybe they are the problem.

 

[Sing]

I too want to know who appointed him. I believe that the patient community has a right to know. Let's hone in on this.

 

[Simon]

I've just written in detail about the NIH study over at MEAction.
Extraordinary NIH ME/CFS study may be most comprehensive and in-depth ever
| #MEAction – A platform for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome activism

As you can tell from the title, I think it's pretty good. Yes, I share many of the concerns voiced here and hope the NIH will address them, but at the same time I think it's worth focusing on what this study might do - there are a lot of very impressive elements to it.

 

[jadam914]

I've just written in detail about the NIH study over at MEAction.
Extraordinary NIH ME/CFS study may be most comprehensive and in-depth ever
| #MEAction – A platform for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome activism

As you can tell from the title, I think it's pretty good. Yes, I share many of the concerns voiced here and hope the NIH will address them, but at the same time I think it's worth focusing on what this study might do - there are a lot of very impressive elements to it.

I see Wallit suspiciously absent from that assessment. The psychobabble that he has used in the past shows that he believes there is a physiological component but also a notable psychological component involved. That with the inclusion of FMD patients leaves me a little suspicious. This could all go great but call me paranoid it has the potential to go completely sideways too. Guess we will see how things play out.

 

[Sasha]

I've just written in detail about the NIH study over at MEAction.
Extraordinary NIH ME/CFS study may be most comprehensive and in-depth ever
| #MEAction – A platform for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome activism

As you can tell from the title, I think it's pretty good. Yes, I share many of the concerns voiced here and hope the NIH will address them, but at the same time I think it's worth focusing on what this study might do - there are a lot of very impressive elements to it.

Superb article - I highly recommend it.

I think you should flag it up on a new thread, Simon.

 

[A.B.]

Thinking about it, XMRV was a fiasco but still helped us by attracting the attention of good scientists, most notably Ian Lipkin.

In the worst case that nothing really interesting is found, and psychobabblers as usual conclude that it's a case of witchcraft, err somatization, chances are good that real scientists will see enough abnormalities to become curious and realize that there's a disease waiting to be discovered.

 

[Sasha]

I see Wallit suspiciously absent from that assessment.

The focus of the article is on the bioscience, and it's an excellent account of that for the layperson.

Walitt may or may not end up in the study, and how the results are interpreted will depend on the statistical analysis plan, among other things, which hasn't been released yet.

I share your concerns about the potential psychgenic aspects of this study, @jadam914, but they may yet be ditched. Meanwhile, I welcome an account of the bioscience in the study - and it's very exciting and impressive.

 

[jadam914]

@Sasha, I agree good over all assessment and I am hopeful for what a good study can bring.

 

[BurnA]

Thinking about it, XMRV was a fiasco but still helped us by attracting the attention of good scientists, most notably Ian Lipkin.

In the worst case that nothing really interesting is found, and psychobabblers as usual conclude that it's a case of witchcraft, err somatization, chances are good that real scientists will see enough abnormalities to become curious and realize that there's a disease waiting to be discovered.

What gives me hope is that sometime in 2018 the RTX Norwegian phase 3 trial results will be published. Most scientists who have followed this work to date probably agree that the results should be positive. I think it is telling that the lead slide in the recent presentation by Nath mentioned this work.
I can't see any way the NIH would risk publishing the results of their study with any hint that this disease is somehow pshycological only for the RTX trial to be published shortly afterwards demonstrating the opposite. The NIH would look very foolish indeed.

 

[Bob]

Letter sent to NINDS from the U.S. Action Working Group.
http://www.cortjohnson.org/blog/2016/03/02/20881/

 

[BurnA]

Letter sent to NINDS from the U.S. Action Working Group.
http://www.cortjohnson.org/blog/2016/03/02/20881/

We seek RFAs totaling $7-10 million per year during this ramp-up period

Is it just me or should they have aimed a bit higher ?

Not a bad letter in general, covers a lot of ground and will be food for thought.

 

[Bob]

Is it just me or should they have aimed a bit higher ?

That's what I wondered, but I guess they're thinking in practical terms. They want to be seen to be a credible partner. Also, the money set aside for an RFA, isn't the upper limit of research funding for a year. So it doesn't say anything about how much money should be available for research in total.

 

[medfeb]

Also, the money set aside for an RFA, isn't the upper limit of research funding for a year. So it doesn't say anything about how much money should be available for research in total.

Yes, that's a key point. You still want significant funding for investigator initiated applications, for centers of excellence, and other kinds of grants and programs.

 

[rosie26]

Thinking about it, XMRV was a fiasco but still helped us by attracting the attention of good scientists, most notably Ian Lipkin.

That is what I have always said. We got huge attention out of XMRV and also captured Dr Lipkin, Hornig and team. Something very, very good came out of it.

 

[radicchio4497]

That with the inclusion of FMD patients leaves me a little suspicious. This could all go great but call me paranoid it has the potential to go completely sideways too. Guess we will see how things play out.

one interpretation that has been discussed is that with the wrong patient group this trial could devolve into PACE pt 2; we would have yet another very highprofile study which only hurts patients.
i think there is room for optimism and i don't mind all the positive posts but i also appreciate the critics who have taken the time and energy to draw attention to the problems.