NIH post-infectious CFS study

[viggster]

Unfortunately, the introduction of new criteria after you have a cohort is likely to mean no more than a check box on a form saying "PEM", and a question by a researcher, "Do you feel worse after exercise?"

Patients have not been recruited yet, and will be referred to NIH by national ME/CFS experts.

 

[BurnA]

Patients have not been recruited yet, and will be referred to NIH by national ME/CFS experts.

Why let the truth get in the way when you can just speculate and complain ? Get with the spirit here!

 

[Kati]

Screen shots from dr Nath's presentation at the CDC Grandrounds:

 

[viggster]

This thread is so cluttered I started a new one for details of the study:
http://forums.phoenixrising.me/index.php?threads/details-on-nih-study.43076/#post-697563

 

[halcyon]

It's all well and good for officials from the NIH to reach out personally to well known advocates and organizations, but this is not a replacement for open communication with the public. Clarifications on the study should not have been relayed to us all via these advocates. They should have appeared either on the site where the original protocol was posted, or another separate NIH site. This just caused further confusion, as demonstrated by the slides provided during the CDC talk that do not match what was reported by the Millers re: patient selection criteria. Personally I want answers direct from the NIH on an official channel, I don't want the Miller's or anyone else's interpretation of what they were told because it's open to misinterpretation and confusion.

 

[Bob]

@halcyon, in case you missed some earlier posts, I think we've now established that the NIH have indeed communicated via official channels, in an inclusive way:
http://forums.phoenixrising.me/inde...nfectious-cfs-study.42873/page-18#post-697500

 

[halcyon]

@halcyon, in case you missed some earlier posts, I think we've now established that the NIH have indeed communicated via official channels, in an inclusive way:
http://forums.phoenixrising.me/inde...nfectious-cfs-study.42873/page-18#post-697500

Thanks @Bob, I am aware of that. Unfortunately the details are still vague, I don't find "multiple consensus criteria" to be a very satisfactory answer. Oxford was a consensus criteria.

If they told specifics to people on the phone or via email, they should also appear on that page.

 

[Nielk]

I acknowledge the misunderstanding about my one comment saying. “I just found out that MEadvocacy did receive this e-mail as well. This is unacceptable. MEadvocacy did not ask to receive this type of covert unofficial communication.”

MEadvocacy welcomes responses from US health agencies when they send in questions or requests. This was not the case here.
It appears, he was answering some individual advocates that had sent him questions from the community they were compiling, and not answering our petition email. So it was confusing to see our organization’s email alongside those advocates.

 

[dancingstarheart]

The US ME community has had a very bewildering, fast paced week. First with the news that this protocol for an intramural study went up on the NIH website and then followed up by snippets of information here and there.

One advocate gets a phone call, the other one just happens to be at meeting with NIH/NINDS. A handful of advocates get one e-mail. Others get another e-mail.

This is way too disorienting and is firing up the anger in the community. We, at MEadvocacy, have seen this anger and do not want to be part of this confusing dissemination to the community. The NIH is a huge, very well organized agency in the US with the largest budget (over $300 billion). They have a vast and healthy staff available to them.

 

[Nielk]

NIH has many systems in place for communication that they can use (eg. listserv). There is no reason for this cryptic type of communication to further confuse the patients which stokes their anger. Patients have enough to deal while severely ill. Why is no one considering them? Should patients have to jump from Phoenix Rising threads and fb pages to find out about things that will affect their future health? This is why I was upset to see MEadvocacy’s name attached, to one of these non-public communications.

 

[dancingstarheart]

SOLUTIONS FOR BETTER COMMUNICATION:

MEadvocacy expects any information e-mailed to us to be turned into official statements for all to see. We are asking for full disclosure of the selection process for this study.

We understand this is a learning process of improving communication, but was not given a chance to address given that IF this Koroshetz email was an indirect response to the petition, WHY would other individuals be included?

Turning these types of email announcements into official statements would cut through this ambiguity.

 

[Bob]

@Neilk, @dancingstarheart, I get the feeling that you are angry because your petition hasn't had a response yet, whereas other communications have been responded to. But I don't think you should expect such a quick response to a petition.

With regards to their communications in general, we've been told repeatedly that the information we require will be published shortly, so I'm not sure why we should be angry about the communications. Personally, I'm more than happy for informal lines of communication to be open, both ways, between our community and the NIH, as long as there is ultimately a degree of transparency.

I understand why the community is angry about things in general, taking into account the historic context, but the anger surrounding this project is bewildering to me. I think there may be lots of misinformation perpetuated by our community that is confusing people. I've seen bizarre things being said about the project and plenty of unhelpful and confused speculation. And now there have been bizarre complaints that the NIH is communicating with patients and that the NIH study is a fishing expedition.

I wonder if most people had read about the background to the project, and it would have been nice to see ME Advocacy helping the community to understand what information was available. i.e. to inform people that the patients are to be selected using the CCC, and selected by the expert physicians that Dr Unger is using in her project. And that the study will investigate immune and neurological abnormalities. This might have helped avoid unnecessary anger and stress.

The thing I'm most angry about is the ME Advocacy petition, which I've kept quiet about until now.

I find it ironic that ME Advocacy is called ME Advocacy when they are advocating exactly the opposite of what I believe are in my interests (i.e. in the interests of ME patients). They've created a a petition to shut down the most promising study in the history of ME, and they're rebutting the apparent renewal of good-will and renewal of relations from the NIH. And now there's an attempt to shut down friendly communication channels between the NIH and the patient community.

It's one thing to do constructive criticism, or to protest with a specific goal in mind, but this seems like an attempt to say no to everything: to destroy community relations with the NIH and to destroy research. Not in my name, thanks. ME Advocacy do not represent me or my interests.

I might start a petition to demonstrate conditional support for the project. (Conditional upon certain criteria being met.)

 

[A.B.]

The opposition to this NIH study resembles the opposition to the IOM report. Perfect is the enemy of good. Some advocates want perfection and are apparently willing to risk destroying the good.

Yes, there are some valid concerns about a few team members likely holding strong beliefs about CFS being all in the head. We should ask Dr Nath to replace them with people that can look at the problem from a fresh angle, or at least, try to prevent any bias from creeping in. Anyway, I doubt that everyone shares these beliefs.

 

[Bob]

I totally understand most of the concerns and fears that have been expressed in this thread. And I'm grateful that people are raising the concerns, discussing the issues in careful detail, and lobbying in a constructive way. But I'm finding some attitudes and lobbying activities totally bewildering and counter-productive. Next we'll be demanding that the NIH stops funding any ME research whatsoever.

 

[Sean]

Yes, there are some valid concerns about a few team members likely holding strong beliefs about CFS being all in the head.

Can I suggest that the politics of this for the NIH is that some representatives from that school need to be involved so they can't say afterwards that they did not get a fair hearing. If they are involved, and the study results do not support their model, they can hardly plead an unfair hearing.

As to the 'fishing expedition' charge. Given how little we know for sure about this disease (or group of diseases) then an intelligent, considered cast or three of the medical science net sounds like a good idea to me.

The NIH don't know what they are going to find, and if they are going to do the science properly then they can't exclude, or be seen to exclude, any current prominent hypothesis.

But they should certainly do it robustly and transparently, and we should certainly publicly hold them to that standard.

 

[Valentijn]

Can I suggest that the politics of this for the NIH is that some representatives from that school need to be involved so they can't say afterwards that they did not get a fair hearing. If they are involved, and the study results do not support their model, they can hardly plead an unfair hearing.

But when the psychobabbler is a lead investigator (Dr. Brian Walitt), the damage done can be tremendous. I've seen it in his prior studies in Fibromyalgia, post-chemo fatigue, etc, as discussed in the Details on NIH Study thread.

 

[Cheshire]

Can I suggest that the politics of this for the NIH is that some representatives from that school need to be involved so they can't say afterwards that they did not get a fair hearing. If they are involved, and the study results do not support their model, they can hardly plead an unfair hearing.

I hope you are right, because some involved like Dr Brian Walitt have very questionable views.

 

[ukxmrv]

Can I suggest that the politics of this for the NIH is that some representatives from that school need to be involved so they can't say afterwards that they did not get a fair hearing. If they are involved, and the study results do not support their model, they can hardly plead an unfair hearing.

As to the 'fishing expedition' charge. Given how little we know for sure about this disease (or group of diseases) then an intelligent, considered cast or three of the medical science net sounds like a good idea to me.

The NIH don't know what they are going to find, and if they are going to do the science properly then they can't exclude, or be seen to exclude, any current prominent hypothesis.

But they should certainly do it robustly and transparently, and we should certainly publicly hold them to that standard.

We used to hear that same excuses about the UK research groups i.e. that it was best if White et al are part of these groups for the same reasons.

One of the lessons we have learned is that it is not always the science but the spin that is important. If a researcher on this study has used spin before to represent results in a dishonest or patient hating way then they will do the same to us.

I've come to the conclusion that we need to ask of a study "is it good enough" for us as a group in the context and taking all the factors into consideration?

If we are making compromises in our heads over a study that maybe it simply isn't good enough. I don't mean perfect here but is it good enough - not as a start because for all we know a study may be the death knell for us or be used to kick ME into the long grass of waiting 5 years while we are told that they are doing something.

In my opinion we need to look at a study is see if it is worth the hype, the money and the wait. It doesn't need to be perfect for me it needs to be good enough.

Is this study "good enough" or not? We need to decide what makes the offering "good enough" for us to take the risk of being partly placated by it (if that is happening).

Someone mentioned ACTUP recently and it reminds me of the famous speech of Larry Kramer "we are not crumbs, we must not accept crumbs"

I don't have the answer here but maybe the question?

 

[ScottTriGuy]

I hope you are right, because some involved like Dr Brian Walitt have very questionable views.

My gut reaction is that we shouldn't hope - we should raise our concerns and push to have him removed - it could be a strong signal from the NIH to the patient community that they are listening and responding.

 

[Valentijn]

My gut reaction is that we shouldn't hope - we should raise our concerns and push to have him removed - it could be a strong signal from the NIH to the patient community that they are listening and responding.

Agreed, 100%. This study could be great, if entrenched spin-doctors like Brian Walitt are kept away. I have a strong suspicion that at least one of the weird control groups would leave with him.