Recording of Lucinda Bateman MD March 4 talk: "New Clinical Definitions for ME/CFS"

[Dolphin]

Published on 6 Mar 2015
Dr. Lucinda Bateman discusses the new diagnostic criteria and new name for ME/CFS - an OFFER Education Meeting held on March 4, 2015

(I haven't watched this myself)
ETA: Original link no longer works so have posted in the newer one that does work

 

[Amaya2014]

I'm not finished yet. It's a lot to take in but my first thought is that we may have been better served for Dr. Bateman to have released this education piece prior to the written report. To me she "gets it". Plus, she is adding extra language that gets lost in the written material. She gives real world examples, shares her personal experiences as a provider, and identifies some of the common issues that cause so much trouble when patients interact with doctors.

Personally, I thought OI wasn't so bad for me compared to the cognitive impairment but now I understand how I was experiencing OI. When I first became ill I was experiencing lightheadedness, daily headaches (prior to CFS I've had maybe 5 my whole life), and vision problems.

She highlights the bed-bound and home-bound (our often forgotten warriors) and she doesn't give the light of day to CBT and GET!

I think most doctors in practice will find it hard to spare the time to watch all of this but if the education of new doctors will be like this...I can only praise God...this was a beautiful day. Sending hugs and thumbs up CFS/ME/SEID community.

 

[worldbackwards]

Nice to be called a "warrior"!

 

[Kati]

I'm not finished yet. It's a lot to take in but my first thought is that we may have been better served for Dr. Bateman to have released this education piece prior to the written report. To me she "gets it". Plus, she is adding extra language that gets lost in the written material. She gives real world examples, shares her personal experiences as a provider, and identifies some of the common issues that cause so much trouble when patients interact with doctors.

Personally, I thought OI wasn't so bad for me compared to the cognitive impairment but now I understand how I was experiencing OI. When I first became ill I was experiencing lightheadedness, daily headaches (prior to CFS I've had maybe 5 my whole life), and vision problems.

She highlights the bed-bound and home-bound (our often forgotten warriors) and she doesn't give the light of day to CBT and GET!

I think most doctors in practice will find it hard to spare the time to watch all of this but if the education of new doctors will be like this...I can only praise God...this was a beautiful day. Sending hugs and thumbs up CFS/ME/SEID community.

Thx @Amaya2014 that's great news

 

[Dolphin]

Watching this new after @Amaya2014's recommendation.
I thought it was interesting that she said they used cognitive impairment and/or orthostatic intolerance partly because the paediatric population tends towards POTS and less cognitive impairment.

 

[Ember]

Question: “Who determines the codes and what's the process?”
Answer: “I honestly do not really know enough to give you a good answer.”

 

[Scarecrow]

@Dolphin the link in your first post isn't working for me. Here's another:

 

[Denise]

I thought it was interesting that she said they used cognitive impairment and/or orthostatic intolerance partly because the paediatric population tends towards POTS and less cognitive impairment.

I wonder what (if anything) that says about prognosis for pediatric patients who have OI and lots of cognitive impairment.

 

[Ember]

Question: “What kind of specialist would best support SEID and the new clinical criteria?”

Answer:

It's the same problem, you know, as it has been, and that is that it's a bit much for primary care. We want primary care to be able to recognize; primary care can make these assessments; they can do orthostatic, you know, they can ask questions; they can understand what symptoms are present. They may need specialists to assure them that it's not another problem. Down the road hopefully, it'll land or nestle somewhere, you know, in a specialty area once we have the science a little more clear. So far, nobody really wants to claim it because it's intimidating, right? It's this illness that we don't really understand very well. But I think we can make more progress.

 

[Amaya2014]

Question: “What kind of specialist would best support SEID and the new clinical criteria?”

Answer:

@Ember I think this is very honest of her, although it would have been nice to hear something specific. From what I've experienced, I don't see why rheumatologists here in America are "saddled" with the referrals. The illness is systemic and seems primarily neurological/immunological and/or infectious disease specialist (although I secretly hope this is not what we have).

I hope others chime in, or maybe it should be its own thread, but what medical field/specialists do you see us being best served? (Other than CFS/ME specialists)

 

[Ember]

“There are no exclusionary criteria in this case definition:”

A differential diagnosis, appropriate work-up of symptoms, and treatment including referral to specialists is expected of health care providers. There is no way to list in case definition everything this...that can look like this. And as soon as you try to do it, guess what, you miss things. That's the rest of medicine that can present with abnormal symptoms...with fatigue, or cognitive function, or exercise intolerance, or pain syndromes or reasons for not sleeping. So doctors will be expected, like with every other disease, when patients present with a symptom to assess them, and they will continue to assess them, and if the symptoms fall into place in this way, if early on it looks like this diagnosis, this can be a working diagnosis. But lots of people who present with these symptoms get better, and they probably shouldn't get a diagnosis that is a chronic illness with poor prognosis, right? Do you really want to burden people who are going to get better with that? All other identifiable illness should be diagnosed and treated, and risk factors should be corrected within the 6 months; thus there's no need for this exhaustive list of exclusion criteria.

 

[Dolphin]

@Dolphin the link in your first post isn't working for me. Here's another:

Thanks. Yes, OFFER (Utah) have v2 = version 2 under the new link. I've now changed the link in the first message.

 

[Ember]

Question: “Who determines the name?”

Answer:

You know, it's kind of like herding cats. So the question is: “Who decides the name?” And I'm not really sure. So the IOM...we felt like we were in a good position to...in as good a position as any to recommend a name. We'd been immersed in this, we'd got a lot of patient input... honestly, I've been part of this field for a long time, and no one has been able to come up with a name. There's been a lot of suggestions and no ability to move forward on the new name. And the biggest problem with ME, as a name...a couple of problems...one is that the evidence base is not quite up to the standard of an evidence review to call it that in terms of inflammation, neuroinflammation...we're really, really close, but the timing was just not quite right. You're supposed to have, you know, large studies, replicated studies...there's some standards about what kind of evidence is kind of irrefutable evidence. My argument is...when we create new diagnostic criteria, we can't say, “This is now ME.” ME has its own case definition, and people have a diagnosis of ME. You can't just take over the name of other...of something else that's defined by other criteria. So it is difficult. So the solution was...we're going to put forward these clinical criteria, and when people meet these clinical criteria, we suggest it gets called this. And there is some reason to call it that in terms of identifying the symptoms. And in the report is says this might be transient or a working name until subgroups are better identified. And I think that there are at least two major subgroups that fall under SEID in terms of patients with more peripheral POTS and autonomic disease...this is my opinion...and people that become really ill with what seems more like a neuroinflammatory process, but and then probably some other overlap. That's why we need to take this as a foundation and do more research. Believe me, this provides a much better foundation than what we had before. A scientist that's interested in neurocognitive symptoms...they can go to that section; they can read the entire bibliography and they can decide where they want to go from there. Same with post-exertional malaise. People want to say, “What's post-exertional malaise? How shall we define it?” They can go and they can read a concise bibliography and an explanation about what the literature has shown to date. So this provides a very good foundation for people who want to take the next step.

 

[Dolphin]

I found the talk more informative/interesting than the questions-and-answers session.

 

[Dolphin]

Somebody commented on Facebook:

Here's a slide where she's explaining that it's not "fatigue", it's a "debilitating loss of function". I keep saying we need a better word for "tired", maybe this is it!!

I found this bit, and how she explained it, interesting. They were actually trying to move away a bit from "fatigue" for this item in the criteria.

 

[Ember]

Question: “If this is a clinical case definition, what will be the research case definition going forward?”

Answer:

I don't know. So her question is: “If this is the clinical case definition, what will be the research case definition going forward?” There's pretty clear consensus that there are two huge deficits in the field. One is knowledgeable clinicians who can accurately diagnose and offer care to patients. So this is an attempt to try to move the ball forward on that one. In terms of research case definition, my own opinion is that it doesn't matter what you use as long as you say what you use. And it would be nice if everyone used the same ones, but as long as you know how people divided, interpret the case definitions that way. But I think we should have the most specific narrow case definitions we can when we do studies. And hopefully this kind of report will allow people to say, “This is a group of people who met these criteria and had this, and we applied this and here's what we learned from it.” So you don't have to have a perfect case definition; you just have to be clear about who you include. And the condition of the prior case definitions made it so that was very difficult. It was very hard to know sometimes how people were chosen and how they met criteria when they were included in the studies.

 

[Kati]

What we are seeing here is a caring, honest, experienced physician who understands the illness and co-morbidities very well and wants the disease to move forward. The IOM contract was 'the' opportunity.

It is HHS' turn to speak up and react appropriately.

 

[Forbin]

Thanks for posting this. I thought this was very informative in terms of understanding the the rationale of the committee on various issues.

Here's an interesting tidbit that Dr. Batemen mentioned in the Q&A:

"I would say that most studies that are done in CFS clinics - those physicians use Fukuda, but they actually diagnose a subset of Fukuda because most of them require Post Exertional Malaise."

I've suspected that this was the case. I've seen many studies dismissed by some patients because "they only used Fukuda," but I doubted that knowledgeable researchers would want to waste their time trying to do research on such a heterogeneous population. My impression is that it may have been thought politically correct to only mention Fukuda because that's been the CDC line, and it's probably the only population you can get an NIH research grant for - but no one says that you can't use a more stringent subset of Fukuda.

You can see the suggestion of this in the spinal fluid proteome study by Drs. Schutzer and Natelson. The patients "meet" Fukuda, but are also "evaluated by an expert in unexplained fatigue and pain." That "evaluation" could be much more selective than Fukuda.

It was actually quite heartening to see the Lipkin/Hornig study come out and say that the patients met both Fukuda and the CCC. That may have been done before, but I thought it was an important step forward.

 

[Dolphin]

Thanks for posting this. I thought this was very informative in terms of understanding the the rationale of the committee on various issues.

Here's an interesting tidbit that Dr. Batemen mentioned in the Q&A:

"I would say that most studies that are done in CFS clinics - those physicians use Fukuda, but they actually diagnose a subset of Fukuda because most of them require Post Exertional Malaise."

I've suspected that this was the case. I've seen many studies dismissed by some patients because "they only used Fukuda," but I doubted that knowledgeable researchers would want to waste their time trying to do research on such a heterogeneous population. My impression is that it may have been thought politically correct to only mention Fukuda because that's been the CDC line, and it's probably the only population you can get an NIH research grant for - but no one says that you can't use a more stringent subset of Fukuda.

Yes, I know some researchers in the UK who do this (say they use Fukuda but actually require post-exertional malaise).

 

[Ember]

Some closing comments...

“Yeah, they're pretty... people are not happy about this new name and.... But my...the way I look at this is...we have not made any progress really for two decades to speak of in this field. So something had to change. It just wasn't working. I'm all for change and trying things.”

I think the Institute of Medicine fulfilled their contract. I think the product has some power and can really make a difference. How it will all sort out in terms of the name, and you know, what comes forward, I don't know. It's not the job of the Committee to determine that. There's always opportunity for input to federal agencies. And I hope it jostles things up and we make progress.