ME/CFS Collaborative Research Centers & Data Management Center Announcements

[Nielk]

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.

 

[A.B.]

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.

Yes, the evil government that just created three research centers for this illness is out to get patients. Only people who can't walk should be allowed the privilege of a ME diagnosis, the rest doesn't matter anyway.

 

[snowathlete]

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.

I personally think the IOM criteria are good and I don't have an issue with them being used for research purposes, even though, as you point out they did say they were meant for clinical purposes when they came up with them. It always seemed an odd thing to say to me because it was obvious they'd likely get used for research purposes too.

 

[Nielk]

I personally think the IOM criteria are good and I don't have an issue with them being used for research purposes, even though, as you point out they did say they were meant for clinical purposes when they came up with them. It always seemed an odd thing to say to me because it was obvious they'd likely get used for research purposes too.

It depends if you are looking for CFS criteria or criteria that describe ME. Conflating the two has not served to help anyone.

you can read some arguments here against the IOM criteria. http://bit.ly/2k6nsiu

 

[Tally]

What some members here are advicing against is representatives of the OMF using their influence in the community to put pressure on the NIH for delivering a specific outcome. This is, as explained, neither in patients' nor the OMF best interest, as the NIH finds this meddling inappropriate.

I understood this the first time it was stated. However now I was replying to statement

I was once a HUGE fan of OMF; but sadly after the last few weeks my views have dimmed. OMF has dug it's own hole, and they own fixing the COI issues detailed in the NIH study report.

NIH and COI happened days ago, not weeks ago so obviously the first and the second sentence are not talking about the same event which you and @A.B. seem to have missed. My comment to the first sentence is what I think about letting a personal grudge against one person paint one's opinion of the whole organization. My comment to the second sentence is that I don't agree with NIH that OMF has conflict of interest, and I used an example of recommending exercise to make a point that officials don't always know what they're talking about.

 

[Groggy Doggy]

If you could look at this less emotionally you would realize that hole you're digging will swollow you too.

Thanks for the personal attack.

 

[Nielk]

Yes, the evil government that just created three research centers for this illness is out to get patients. Only people who can't walk should be allowed the privilege of a ME diagnosis, the rest doesn't matter anyway.

You are right. We should be so happy that they have showered us with massive funding so that we should totally ignore what cohort they are studying.

We have never been burned before with studies done on wrong cohorts.

 

[Tally]

Thanks for the personal attack.

That's not a personal attack.

 

[adreno]

NIH and COI happened days ago, not weeks ago so obviously the first and the second sentence are not talking about the same event which you and @A.B. seem to have missed. My comment to the first sentence is what I think about letting a personal grudge against one person paint one's opinion of the whole organization. My comment to the second sentence is that I don't agree with NIH that OMF has conflict of interest

In that case I agree with you on the first sentence, and disagree on the second.

 

[snowathlete]

It depends if you are looking for CFS criteria or criteria that describe ME. Conflating the two has not served to help anyone.

you can read some arguments here against the IOM criteria. http://bit.ly/2k6nsiu

I think that depends on what people mean by "ME". If you mean encephalomyelitis in the true sense, as in inflammation in the brain and spinal cord that damages myelin, then yeah, I'd agree with you. But I don't think there is a great deal of evidence that most people with an "ME" diagnosis have that going on. I doubt I do yet I have an "ME" diagnosis. I think the criteria accurately describe what most people given a diagnosis of "ME" have going on.

 

[Nielk]

I think that depends on what people mean by "ME". If you mean encephalomyelitis in the true sense, as in inflammation in the brain and spinal cord that damages myelin, then yeah, I'd agree with you. But I don't think there is a great deal of evidence that most people with an "ME" diagnosis have that going on. I doubt I do yet I have an "ME" diagnosis. I think the criteria accurately describe what most people given a diagnosis of "ME" have going on.

I'm talking about ME as described by the ICC.

 

[A.B.]

You are right. We should be so happy that they have showered us with massive funding so that we should totally ignore what cohort they are studying.

IOM criteria doesn't mean ignoring what cohort is studied. IOM criteria were based on the Canadian criteria but simplified. It does result in somewhat more people meeting diagnostic requirements, which is a good thing because there is a big underdiagnosis problem. I don't think it will result in a lot of people being diagnosed with the illness when they really have a quite different problem. I think the IOM definition is mainly opposed because some advocates have a habit of antagonizing everything the US government does in relation to this illness. I don't subscribe to the view that there is a true definition of ME or CFS or whatever because until the biology is figured out nobody will be able to accurately define the illness or illnesses or subgroups. I also believe in social justice and abandoning patients just because they don't meet some made up strict definition would be horrible injustice. In that sense, the illness definition only has to be good enough, and IOM criteria are good enough because they emphasize PEM which is the most useful objective anomaly so far discovered.

 

[snowathlete]

I'm talking about ME as described by the ICC.

I think they're pretty similar, the criteria, so I guess we disagree in this case.

 

[Nielk]

I think they're pretty similar, the criteria, so I guess we disagree in this case.

You think the IOM and ICC are similar?

 

[snowathlete]

You think the IOM and ICC are similar?

pretty similar in terms of their selection of patients, yes.

 

[Nielk]

pretty similar in terms of their selection of patients, yes.

Based on what?

 

[Groggy Doggy]

I am very pleased to see the NIH fund the research centers. As I recall a lot of effort went into this, both pitching the concept and designing a plan. Dr Montoya was a big advocate of the research centers. I don't see Dr Montoya nor his family members, nor anyone from the Stanford Fatigue Clinic tweeting to Dr Collins about their dissatisfaction regarding Dr Montoya's bid being rejected by the NIH grant process as a research center.

 

[snowathlete]

Based on what?

reading them and comparing.

 

[Nielk]

reading them and comparing.

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.

 

[neweimear]

I am lost, what did OMF do wrong?