BurnA
Senior Member
- Messages
- 2,087
Could you start a new thread or visit an already existing one to talk about criteria?You think the IOM and ICC are similar?
Otherwise this thread will become very sidetracked.
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Could you start a new thread or visit an already existing one to talk about criteria?You think the IOM and ICC are similar?
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.
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.Could you start a new thread or visit an already existing one to talk about criteria?
Otherwise this thread will become very sidetracked.
It's a good question which needs to be asked and answered.@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?
Hi @NielkIsnt 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!
Please send me the link to the FB page so I can read the postSomeone 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.
https://www.facebook.com/lucinda.bateman.1/posts/10212764555181011Please 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!
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.Thanks! It was buried in there. When/if she replies to the 3 questions about using IOM, do you mind letting me know?
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.
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.
Could you start a new thread or visit an already existing one to talk about criteria?
Otherwise this thread will become very sidetracked.
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,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.
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.So, what is exactly the purpose of this thread?