NIH intramural research program update

[Scarecrow]

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

An outline comes before a draft, so you will see it before it is finalised.

A conversation has to start somewhere.........

 

[jimells]

Not so.

I'm afraid I don't understand your post. Are you saying NIH did not react quickly to the XMRV findings?

I'm not interested in who did what during the XMRV saga, I'm just trying to make the point that NIH, when properly motivated, is perfectly capable of action, But when it comes to ME, NIH suddenly becomes incompetent and broke.

 

[BurnA]

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.

This certainly isn't happening right now but are you 100% sure it's not going to happen ? Everything has to start somewhere, are you sure this isn't the start of something positive.

I actually see a lot more than precious little and vague declarations. I see the most comprehensive study ever performed on ME patients being proposed and planned by the NIH. To me that is a big start. It is by no means perfect and we all know the flaws but it is through engagement that things can improve.

 

[viggster]

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.

What are you trying to reconcile? In my open letter to Collins last summer I wrote that I had worked at NCI (part of NIH) from 1998-2000.

 

[RustyJ]

What are you trying to reconcile? In my open letter to Collins last summer I wrote that I had worked at NCI (part of NIH) from 1998-2000.

Hillary's tweet was the first time I knew of the nature of your work was mentioned. The fact that you worked in a public relations capacity at NIH is certainly more relevant to claims of NIH partisanship, than simply 'fellowship', whether or not those claims are justified, I am sure you will agree.

 

[Snow Leopard]

Hillary's tweet was the first time I knew of the nature of your work was mentioned. The fact that you worked in a public relations capacity at NIH is certainly more relevant to claims of NIH partisanship, than simply 'fellowship', whether or not those claims are justified, I am sure you will agree.

So what?

This factionalism - dividing everyone into factions is disturbing.

What matters is what we say and how we act.

 

[leela]

This factionalism - dividing everyone into factions is disturbing.

What matters is what we say and how we act.

Yes. Please let us refrain from indulging the urge to pick at perceived differences and instead unite in our common purpose.

 

[Forbin]

To quote my favorite Klingon philosopher,

"Only a fool fights in a burning house."

​

 

[Aurator]

Hillary's tweet was the first time I knew of the nature of your work was mentioned. The fact that you worked in a public relations capacity at NIH is certainly more relevant to claims of NIH partisanship, than simply 'fellowship', whether or not those claims are justified, I am sure you will agree.

Rusty, just in case you've missed something else too, viggster apparently has ME/CFS like the rest of us.

Could you please tell us then what spirit of "partisanship" with NIH, however strong, would impel a former employee now suffering from ME/CFS to act as a public apologist for vacuous research or any research at all that looked destined not to advance scientific understanding of the disease that was making his life a misery and that he desperately wanted to be cured of?

 

[akrasia]

Francis Collins wrote:

In fact, the signature 6 months after treatment showed intriguing similarities with autoimmune diseases, including lupus, rheumatoid arthritis, and chronic fatigue syndrome.

http://directorsblog.nih.gov/2016/0...-signatures-may-catch-the-infection-sooner-2/

It's striking that Collins casually includes m.e. in the autoimmune category, and it's probably safe to think that this is the starting assumption for the study.

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.

My primary reservation is with the inclusion of the functional movement cohort. I think the primary intent was to show differences. They expect that the fmd cohort will not show the white blood signature Collins describes above, for example. The objection I have to their inclusion is more on the level of how the study might hurt them, providing more ammo to their tormenters.

When @medfeb and Carol Head meet with representatives of the NIH in a couple of weeks, if there's time, of course, perhaps the work of Robert Naviaux could be included in the discussion. The NIH study would be a great opportunity to replicate his results when his paper gets published, which seems fairly imminent, certainly within the time frame of the project. They could enlarge the sample of healthy controls and m.e. patients by using blood from the xmrv study.

 

[ScottTriGuy]

The objection I have to their inclusion is more on the level of how the study might hurt them, providing more ammo to their tormenters.

Ditto.

 

[Sasha]

My primary reservation is with the inclusion of the functional movement cohort. I think the primary intent was to show differences. They expect that the fmd cohort will not show the white blood signature Collins describes above, for example.

But there's a healthy control group in addition to the post-Lyme and FMD group. They don't need the FMD group to show that PWME have a white blood signature that's not normal.

 

[A.B.]

http://directorsblog.nih.gov/2016/0...-signatures-may-catch-the-infection-sooner-2/

The observation that lyme disease changes the immune system (even with complete recovery) may explain why the NIH wants to include this control group in a ME/CFS study.

 

[duncan]

@A.B. , no, I think there are too many dangerously uncertain presumptions to justify a Lyme control group. They certainly cannot discount continued infection, and the immune system changes may be attributable to that. Some of this blog could be perceived as a lightweight distraction; it would not hold up under the scrutiny of a serious and knowledgeable discussion.

And so on and so on. It's a mess, and this move to include a Lyme control group is baffling precisely because there are so many uncertainties still.

Let them select a control group that is cut and dried - or many of us will continue to wonder why.

 

[akrasia]

But there's a healthy control group in addition to the post-Lyme and FMD group. They don't need the FMD group to show that PWME have a white blood signature that's not normal.

I agree, FMD is a puzzling choice of control group. Charitably speaking, their intent may have been to show differences between a "known" psychogenic disease and m.e., which given the Collins quote, is about to exit the functional category.

We deserve a full explanation of how these control groups were chosen. I doubt they'll cop to my point about Wallit. But Collins's inclusion of m.e. with major auto immune disease allays some of my apprehension.

 

[Sasha]

I agree, FMD is a puzzling choice of control group. Charitably speaking, their intent may have been to show differences between a "known" psychogenic disease and m.e., which given the Collins quote, is about to exit the functional category.

We deserve a full explanation of how these control groups were chosen. I doubt they'll cop to my point about Wallit. But Collins's inclusion of m.e. with major auto immune disease allays some of my apprehension.

I really don't see how it's possible to control for "psychogenicness". This FMD control group makes no sense to me at all. I wonder if they've thrown it in so that someone with an interest in FMD can compare PWFMD to healthy controls and it's been bolted onto our study.

 

[TiredSam]

A really paranoid cynic would say that if any people who don't really have ME are allowed to slip into the ME group, when they are compared to someone from the FMD group (who doesn't have a FMD because they don't exist) then there will be no difference between the two when they are compared.

I'm not a really paranoid cynic. Just sayin'.

 

[viggster]

Hillary's tweet was the first time I knew of the nature of your work was mentioned. The fact that you worked in a public relations capacity at NIH is certainly more relevant to claims of NIH partisanship, than simply 'fellowship', whether or not those claims are justified, I am sure you will agree.

I'm not sure what I'd be agreeing to here. If you're implying that I am now tainted for life as a promoter of NIH because I used to work there, I disagree (and so do the editors at the Washington Post). Because you seem so interested in my work history I'll tell you about it. I went to the National Cancer Institute (part of NIH) in 1998 out of graduate school. I wrote press releases and news stories for the Journal of the NCI and took press calls and escorted camera crews around. Then I left and came back to NCI about a year later for the same kind of work. I did that for a year. So I spent 18 months at NCI in their press office. But I wanted to be a reporter, not a PR person, so I left for a reporter job. In 2010, when the Washington Post was looking at hiring me, they of course knew about my work history. Thirty or 40 years ago, news organizations would never hire people who had worked in PR in any capacity, but at some point that informal rule changed, which is good. The Post people knew I would be covering NIH in my job and didn't question whether I could do the job fairly, so they hired me.

If you're worried that I am a "shill" for NIH, please read this story I wrote for the front page of the Washington Post. If you think this story is "promoting" NIH, well then I guess you have a very broad definition of that word. I also did a series of followup stories and was the first person to report additional deaths at the NIH Clinical Center attributed to drug-resistant infections.

https://www.washingtonpost.com/nati...e18b1a-ec66-11e1-9ddc-340d5efb1e9c_story.html

And in case you're forgetting, I embarrassed Francis Collins in the Post with my open letter.

BV

 

[TiredSam]

A really paranoid cynic would say that if any people who don't really have ME are allowed to slip into the ME group, when they are compared to someone from the FMD group (who doesn't have a FMD because they don't exist) then there will be no difference between the two when they are compared.

I'm not a really paranoid cynic. Just sayin'.

Pardon me for quoting myself, but the more I think about this ...

It's also possible that some patients in the FMD group are wrongly diagnosed ME patients (it happens). So that's at least 2 ways that some patients in the ME group can be shown to be just like some patients in the FMD group.

I'm not suggesting that the NIH is intending this result, but when their final report comes out and all the data is released (surely it'll be released?), there's the possibility of others with an interest in such matters interpreting the data in this way. Worse has happened.

ME has been wrongly compared to FMD for 30 years, it should never have happened, and it shouldn't be happening now. The potential linking of ME and FMD should be excluded by a rigourous study design so no-one has to fear it. At the moment all we have are expressions of goodwill from an organisation that seems rather chaotic and doesn't communicate well. Has there been a sensible explanation for why the FMD group is included yet?

Quite apart from the excellent point made above about the potential for continued abuse of those accused of FMD.

 

[Valentijn]

We deserve a full explanation of how these control groups were chosen. I doubt they'll cop to my point about Wallit.

If any pointing was to be done regarding the FMD control group, it would probably be toward Dr. Mark Hallett. He's the head of the Human Motor Control section of the neurology department, and has done a lot of research of functional movement disorders. Carine Maurer is on his team, and has co-authored some of the worst pieces. Silvina Horovits is also on his team and listed in the current study, but we haven't looked at her research yet.

They do not consider the FMD diagnosis to be preliminary or uncertain.