ME/CFS Collaborative Research Centers & Data Management Center Announcements

[BurnA]

You think the IOM and ICC are similar?

Could you start a new thread or visit an already existing one to talk about criteria?
Otherwise this thread will become very sidetracked.

 

[Wally]

For those who were wondering which criteria will be used for these studies, Dr. Bateman replied on her FB page that the IOM diagnostic criteria will be used for research. She will be providing the patient samples (200) for the JAX clinic site.

This is maddening to me bc the IOM are overly broad criteria to begin with. The gov't stated and the IOM committee stated the definition was to be used for clinical diagnostic purposes.

But, as warned by knowledgeable advocates, what the gov't states is not what they end up doing. They warned that once the IOM criteria is created it will be used for research as well.

@Nielk - Thank you for providing information about the research project that Dr. Bateman will be involved with. I wonder what "criteria" will be used for the other research studies that were funded by this round of awards?

 

[Nielk]

Could you start a new thread or visit an already existing one to talk about criteria?
Otherwise this thread will become very sidetracked.

Isnt this thread about the new NIH funded centers? I am discussing a problem with Dr. Bateman stating she will use IIM criteria to select patients. She is providing 200 patient samples for the JAX center.

 

[Nielk]

@Nielk - Thank you for providing information about the research project that Dr. Bateman will be involved with. I wonder what "criteria" will be used for the other research studies that were funded by this round of awards?

It's a good question which needs to be asked and answered.

We have a unique opportunity here for much needed research. We need to ensure the right cohort of patients are used.

 

[Groggy Doggy]

Isnt this thread about the new NIH funded centers? I am discussing a problem with Dr. Bateman stating she will use IIM criteria to select patients. She is providing 200 patient samples for the JAX center.

Hi @Nielk

I am looking at the form to participate in the research, don't know which specific study though, but don't see anything mentioned about the criteria used.

https://batemanhornecenter.org/how-to-participate/

Do you have a link?

Thanks!

 

[Wally]

@BurnA

Please see my comments to AndyPR* and Jonathan Edwards* re suggesting that Members post comments, related to NIH's new round of research funding, elsewhere on the Forum.

At this point, no detailed discussion related to the criteria to be used in these studies has been presented in this thread. When and if detailed comments/discussion takes place, you could report your concerns/suggestions to a Forum moderator. (See, Reply No. 238 and Reply No. 242.)

*Edited to add the name of both Members that I addressed in my comment (identified in this thread) as Reply No. 238.

 

[Nielk]

Hi @Nielk

I am looking at the form to participate in the research, don't know which specific study though, but don't see anything mentioned about the criteria used.

https://batemanhornecenter.org/how-to-participate/

Do you have a link?

Thanks!

Someone asked Dr. Bateman on her facebook page where she posted about the new centers asking her which criteria she will use and she replied IOM criteria.

 

[Groggy Doggy]

Someone asked Dr. Bateman on her facebook page where she posted about the new centers asking her which criteria she will use and she replied IOM criteria.

Please send me the link to the FB page so I can read the post

I checked her personal FB page and the Bateman Horn FB page. I can't seem to locate the post you are referencing.

Thanks!

 

[Nielk]

Please send me the link to the FB page so I can read the post

I checked her personal FB page and the Bateman Horn FB page. I can't seem to locate the post you are referencing.

Thanks!

https://www.facebook.com/lucinda.bateman.1/posts/10212764555181011

 

[Groggy Doggy]

https://www.facebook.com/lucinda.bateman.1/posts/10212764555181011

Thanks! It was buried in there. When/if she replies to the 3 questions about using IOM, do you mind letting me know?

 

[Nielk]

Thanks! It was buried in there. When/if she replies to the 3 questions about using IOM, do you mind letting me know?

I'll try to remember.

 

[BurnA]

Isnt this thread about the new NIH funded centers? I am discussing a problem with Dr. Bateman stating she will use IIM criteria to select patients.

At this point, no detailed discussion related to the criteria to be used in these studies has been presented in this thread.

The criteria discussion is a seperate discussion.
Sorry, but that's a fact.

Otherwise this thread goes into a tailspin.
It's easy to set up a new thread and call it "Criteria used for NIH funded centres"
Then anyone who wants to discuss that topic can join in there.

 

[snowathlete]

One can be diagnosed with IOM without any immunological or neurological symptoms. My husband for example suffer from a specific type of tachycardia. He fulfills the IOM criteria but doesn't come close to the ICC.

Frank Twisk - has done a few analysis comparing the criteria. He has a list of diagnosed that would be included in IOM.

Leonard Jason says the IOM criteria select a larger cohort than Fukuda.

The IOM criteria have not been vetted nor tested yet, doctors are ready to use them for research purposes when they the ones who created the criteria specified it they are to be used only for clinical purposes.

The ICC doesn't require immunological symptoms either. It's not mandatory, you can have that or something else like gut dysfunction.

While it's possible with IOM criteria to not have cognitive impairment and yet meet the criteria instead because you have orthostatic intolerance, I think it likely that such qualifiers often have cognitive impairment too. Not always though. I think it's a valid question whether that's the correct call or not, but you can ask similar questions about the ICC too.

The IOM criteria makes a requirement of unrefreshing sleep while the ICC doesn't require sleep disturbance as a mandatory feature, so you can argue it the other way and say ICC is not specific enough.

Ultimately, they are both flawed, but both are a darn site more honest and effective than some other criteria out there. They're both trying to achieve roughly the same thing though and going about it in similar ways. It is what it is.

You can't validate either because there is no definitive proof whether either criteria are identifying patients correctly.

 

[snowathlete]

Could you start a new thread or visit an already existing one to talk about criteria?
Otherwise this thread will become very sidetracked.

sorry, partly my fault. I won't be adding anything further on that tangent.

 

[Wally]

@BurnA

Apparently, my typing is not keeping up with the number of posts that are popping up on this thread.

Several members have posted that some of the comments made in this thread should be moved elsewhere. Right now, I think there have been suggestions for new threads to be started about 1) individual projects that were funded and not funded, 2) the amount of funds awarded in this round of funding and 3) criteria that will be used in the funded projects.

I have suggested that a Forum Moderator be contacted, if anyone feels certain posts in this thread have become too specific and would be easier to follow in a separate thread. A Forum moderator has the ability to insert an announcement in the thread identifying where a more detailed sub-topic discussion has been started or continued. An individual member can also start a new thread, but they may not have the ability to insert a prominent notice in the thread or to move posts that would fall within the new sub-topic thread.

While an individual member can make such a request to another Member, moderation of the Forum has been set up to allow there to be someone who is trained in how to review and handle such requests. Of course, these posts may only have been meant as a general friendly suggestion to the Membership at large. However, the manner in which such posts were made could be interpreted by others to try to stop further discussion of a topic the poster may not agree with. Since these awards are obviously a "hot topic" on the Forum, I believe that making your suggestion to a Moderator would probably be a better way to direct your request.

Not sure if anyone has bothered to ask a Moderator to review their suggestions to have several sub-topic threads about these awards, but maybe it is time to do so?

 

[Wonko]

@Wally

erm...I'm not entirely sure there are any moderators currently on forum. As far as I know both previous moderators aren't currently and no new ones have been appointed. The only person with any ability to moderate is Mark , the acting CEO, again, as far I know, and he's, as of the last message I saw from him, quite busy with other matters.

So, at the moment, a certain amount of self moderation and additional tolerance is probably a good thing lest a free for all ensues. Which I'm sure nobody wants.

We are, as far as I know, all adults, it shouldn't be that hard.

 

[Nielk]

So, what is exactly the purpose of this thread?

 

[Wally]

@Wonko

I am aware that there have been fewer moderators available on the Forum over the last month. However, I am not aware of any formal announcement being made that the Forum is no longer under Moderation.

So for now, it would seem that concerns/suggestions about this particular thread should first be reported to a Moderator. If no response is received back from a moderator, then who ever is concerned that the thread is getting too cluttered with sub-topics can start a new thread to see if traffic (specific disciussion points) will naturally detour off to these new threads. Any duplicate or over-lapping threads/topics can be cleaned up when moderation of the Forum comes back online.

 

[srallis]

Its not up to Collins to overrule committees. The NIH isn't his fiefdom to do with what he likes but it follows processes such as peer review.

So, sounds like the typical bureaucracy with a bunch of people who get to point fingers at other people or committees or working groups or other b.s. and therefore the buck stops with no one,

@janetdafoe and Ron and his maverick researchers could probably crack this thing faster with private money. Still rooting for Jeff Bezos, as so many of us depend on Amazon deliveries.

Still hard to wrap my head around the paltry NIH funding when compared with other diseases.

 

[adreno]

So, what is exactly the purpose of this thread?

I agree that the criteria are relevant. However, for the sake of clarity, I also agree that it would be better discussed in a separate thread. It is a subtopic, and sometimes when subtopics become large they require their own space.