Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

[alex3619]

ICD-10-CM concerns others

ICD affects insurance codes, and reporting. So by having a separate ICD code they can keep track of patient numbers under the new definition. Its bureaucracy. Its not science, and its not really even medicine.

 

[caledonia]

ICD doesn't concern me. Its just a bureaucratic code, of no scientific merit. The quality of the definition is what is important. Its not been tested. Its relying on unpublished data that has not been peer reviewed. Panel members are involved in one of those studies, the CDC multisite study. Jason's suggestions on severity have been incorporated, but we have no idea what the final outcome of that will be, only an educated guess.

They may be completely right, in which case we have an even better definition than before. However that is not how science works. Relying on unpublished unreviewed data is not good science. We need some real studies. We need the CDC multisite study to publish. We need science, not review.

This could be the best thing we have ever had done. Or a colossal mistake. My position is lets find out sooner rather than later.

I totally agree with Alex on this. Without testing of the SEID criteria on real patients by real doctors, we are only just guessing (either way) that the criteria are good or bad.

It would be terrible to have a repeat of the Fukuda criteria, where we only found out about its flaws 10 or 15 years later. We don't have that much time to waste. Even 5 years (the maximum amount of time SEID is supposed to be reviewed in) is too long.

I would like to see at least one independent test of the criteria right away. Otherwise we are all just left twisting in the wind agonizing over whether the criteria are good, bad, or indifferent.

If the criteria were proven ok, it would go a long way towards creating unity of support.

 

[Ember]

Its bureaucracy. Its not science, and its not really even medicine.

Proposals to change the classification codes aren't accepted apropos of nothing.

 

[alex3619]

My mantra on these kinds of things is always: we need more research. So lets do the science. Lets get some real data and be done with lots of speculation.

Also, using the IOM report for advancing advocacy is still our best game, even if you want all the research to be CCC. By the time SEID is modified or being used on any scale for research it will most likely either be obsolete, or so far down the track we will have had years of CCC research. Even if what you want is CCC ME research, this is the way to go. Years more ME research, with good funding and government attention? Yes, please.

I am not happy with the process leading to the IOM report. If the science shows we should, then we should emphatically reject SEID. However the report is about more than a new name and definition. Its a reference piece showing just how badly we have been let down by government and medicine. We can leverage that even if we finally trash SEID. We already knew that, but a document from the IOM saying so is a big step forward.

In two decades we have never had an opportunity like this. If we miss this then we have only ourselves to blame.

 

[Bob]

I've just been reading a study that conflated 'chronic fatigue syndrome' with 'fatigue' in an animal model study, by subjecting the animal (mouse?) to prolonged activity. While reading it, I thought: "what a pointless study - CFS is an illness - it's not fatigue, so the study will tell us nothing about CFS". Then I thought about how CFS has always been conflated with fatigue, and Fukuda/Oxford have allowed this to happen. Then I thought that the IOM report and IOM criteria carefully distinguish SEID from fatigue, and define SEID as a distinct disease rather than fatigue. And it's an officially endorsed government sponsored report coming from a respected institute. Then I thought that we're being offered something on a plate here! So what the heck are we waiting for? Let's grab this opportunity!

I've been a long time forming my opinions about this - I've been sitting on the fence while I've been reflecting about the potential implications, and I've been trying to see all points of view. But I think I'm off the fence now. I think this may be the best opportunity for our community for decades. I know not everyone agrees with this, and I hate seeing our community split, but at some point I had to make a decision about what I think is best for me and our community's efforts. Of course, it's all meaningless if we don't get more funding etc., but we can use the report for precisely that reason: to advocate relentlessly for funding and proper recognition etc.

 

[Ember]

If we miss this then we have only ourselves to blame.

Patients shouldn't be blamed for the fact that the IOM report has proved so divisive.

 

[alex3619]

I've been a long time forming my opinions about this - I've been sitting on the fence while I've been reflecting about the potential implications, and I've been trying to see all points of view. But I think I'm off the fence now.

I am on the fence for the science, until it is done. I have grounds for being cautious. However politics and science are not the same. This is an opportunity. We use it or lose the opportunity. Given that nearly all research for years will be CCC anyway, as its our most widely used research definition, I am not sure there will be a major issue.

What I really don't like is the politics within government on this issue. We still need to challenge that regardless of what else we do. Just like we still have to challenge psychobabble.

 

[alex3619]

Patients shouldn't be blamed for the fact that the IOM report has proved so divisive.

This has nothing to do with my comment.

 

[Bob]

However the report is about more than a new name and definition.

Indeed. I see it as a political tool. It's partly a political construct, created for political purposes, so let's use it for our political purposes. The CCC and ICC can still be used by physicians and researchers. The IOM report is all about replacing Fukuda (the official government-sanctioned criteria) - it's not about not replacing CCC or ICC.

 

[alex3619]

Patients shouldn't be blamed for the fact that the IOM report has proved so divisive.

I put the blame for the devisiveness on the HHS and NIH. They twisted the CFSAC recommendation. They lied about what they were doing. They ignored our advocacy. They decided on the terms of reference.

How advocacy reacts though is not chosen by HHS. Its chosen by us. They are yanking our leash. Some think there are only two options: pro-IOM or anti-IOM. I would think many advocates would have realized that the best way to quash advocacy is divide and conquer. We can forge our own path, and not be either pro- or anti-IOM. Lets us demand the science.

I think the time is running out for big increases in funding. In a few years we might kiss the opportunity goodbye for a long long time. That is my assessment of the economic outlook currently. We need to advance the science, and our rankings in funding priorities, long before things become really financially tight.

 

[nandixon]

Some think there are only two options: pro-IOM or anti-IOM. I would think many advocates would have realized that the best way to quash advocacy is divide and conquer. We can forge our own path, and not be either pro- or anti-IOM. Lets us demand the science.

I think the time is running out for big increases in funding. In a few years we might kiss the opportunity goodbye for a long long time. That is my assessment of the economic outlook currently. We need to advance the science, and our rankings in funding priorities, long before things become really financially tight.

That's right. It's not an "either or" situation. We can use the IOM report to support advocacy for funding for research, which is the most important thing. Because if a blood marker, for example, can be found, then it will finally legitimize our disease once and for all. All the secondary issues (doctor respect and understanding, proper patient care, etc.) will be resolved much more easily and be much more likely to fall into place once that's happened.

While at the same time, any unhappiness about the specifics of the IOM report itself can be addressed separately.

But the latter has to be done in a way that doesn't hurt efforts to use the IOM to obtain more research funding, which should be the priority. We've been far too underfunded for far too long.

 

[Ember]

It's not about not replacing CCC or ICC.

The SEID criteria as they stand do not explicitly exclude ME. According to Dr. Bateman, “The recommendation is stop using ME/CFS.”

 

[Ember]

I put the blame for the devisiveness on the HHS and NIH.... Lets us demand the science.

For the divisiveness of the report, I blame the IOM Committee. To demand validation of the SEID criteria is to challenge Dr. Clayton's statement, “We recognize that our criteria now represent the state of the science at a moment in time.”

 

[Bob]

It's not about not replacing CCC or ICC.

The SEID criteria as they stand do not explicitly exclude ME. According to Dr. Bateman, “The recommendation is stop using ME/CFS.”

But clinicians and researchers can use whatever diagnostic tools they like to guide their work. The IOM report doesn't, and cannot, stop the CCC or ICC from being used in the same way that they are used now. So it's not a replacement for those criteria if anyone wants to carry on using them for whatever reason. But if the IOM report/criteria are adopted by the CDC then Fukuda will be redundant. So it is intended as a replacement for Fukuda. The ICC can continue to define ME, if people want it to. Or, at least, I can't see any reason why it shouldn't.

 

[Ember]

The IOM report doesn't, and cannot, stop the CCC or ICC from being used in the same way that they are used now.... The ICC can continue to define ME, if people want it to. Or, at least, I can't see any reason why it shouldn't.

Dr. Clayton recommends, “If people meet the criteria for this disorder, they ought to be given the diagnosis and not another diagnosis. They need to be given this diagnosis....” She adds, “There needs to be um...a change in the ICD-10 to reflect this diagnosis. I realize that this is something for the actions of others to take care of but one that's actually very important in this setting.” The IOM Committee made no recommendation with respect to the placement of SEID in ICD-10-CM.

 

[Ember]

But clinicians and researchers can use whatever diagnostic tools they like to guide their work.

For research purposes, the P2P draft report recommended to the NIH “that the ME/CFS community agree on a single case definition (even if it is not perfect).” HHS had requested that the IOM Committee coordinate with two ongoing HHS efforts concerning ME/CFS in order to minimize overlap and maximize synergy. We're awaiting the final P2P report.

 

[Bob]

Dr. Clayton recommends, “If people meet the criteria for this disorder, they ought to be given the diagnosis and not another diagnosis. They need to be given this diagnosis....”

This is a recommendation directed to govt/health authorities, to make sure they drop Fukuda etc. And whoever else wishes to accept the recommendation can do so. If the recommendation is accepted by the CDC, it won't be a law. The situation will be the same as it is now: the CDC will officially adopt its favoured set of criteria, but clinicians and researchers will be free to use whatever guidance and tools they want.

 

[Bob]

For research purposes, the P2P draft report recommended to the NIH “that the ME/CFS community agree on a single case definition (even if it is not perfect).” HHS had requested that the IOM Committee coordinate with two ongoing HHS efforts concerning ME/CFS in order to minimize overlap and maximize synergy. We're awaiting the final P2P report.

I'm not sure what point you are making here, but researchers are free to define their own cohorts and subsets. Sometimes their selection criteria may affect their funding applications, but they can choose to define subsets (e.g. ICC) within their main selection criteria.

 

[Ember]

The CDC will officially adopt its favoured set of criteria, but clinicians and researchers will be free to use whatever guidance and tools they want.

You seem largely unconcerned about the implications for NIH funding and medical coverage.

 

[Bob]

You seem largely unconcerned about the implications for NIH funding and medical coverage.

I don't know how you come to that conclusion seeing as I think funding is our no.1 priority. I don't know a great deal about medical insurance but I can't imagine that the IOM criteria will create a worse situation than we have now, because SEID is defined as a distinct physical disease, and not a psychological illness.