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

[usedtobeperkytina]

From the beginning, Dr. Clayton has shown great deference to the patients. When the first public meeting happened, I would guess half the comments from the public were telling them not to continue or just choose CCC and that's it. It took a lot of patience for her to show respect to each one, even though it was not going to help them in their task. In fact, they had particular questions they wanted to have addressed in public comments that they felt would be helpful. But much of that valuable time was on things that were against, the IoM committee and what it was doing. This took compassion, empathy, understanding, confidence and wisdom.

When the patient panel spoke in the second public meeting, she had sincere words of understanding and appreciation for each of them. And since the report has come out, she has said that they listened to how the patients describe the disease and read all the public comments. Many researchers think the answer is in a test tube. She evidently agrees with Osler, "If you listen to the patient..."

And now she brings her creds and passion to this disease. Clearly her compassion has made her upset when people say, "I'm tired too." (She said as much in the briefing where the report was released.) To have someone not intimately involved with patients get upset at those statements is quite unusual.

I think this shows the best strategy is to educate the ignorant who have the power instead of trying to block them or stop them. Look at the FDA and P2P and IoM reports. The science is self-evident, as Dr. Clayton said. I appreciate her role as chairman as she was clearly able to lead the diverse group to a unanimous accord. She was evidently able to get them to see the truth as a big picture instead of letting them get bogged down in the weeds. She is amazed at the process and how they were able to unite. I'm amazed at her ability to get Klimas, Lerner, Rowe, Keller and Natelson to agree on anything.

I appreciate Dr. Clayton saying, "Take it, use it, improve it." I agree. We need to get it out there and then improve it as science and experience with it reveals how to improve it. Waiting a few more years before we benefit from what the report itself does for us will only delay and possibly kill the momentum and opportunity it gives us now.

I want to also say that I am impressed with Carol Head. This is nothing against Kim McCleary. I thought she had some important skills and history that served CAA well. But in person and in the public, she was not warm. Carol is dignified, a patient herself (although much better, I think she still has some symptoms) and comes across as compassionate. She is not defensive, which allows her to acknowledge, give respect to those who don't like the organization.

I also like Morgan Fairchild. To be honest, I, like probably others, wondered in the midst of her describing her condition if she really had the disease. But she gave enough explanation that I saw that finger print pattern that matches my disease, particularly having to write everything down.

I also know that because I do freelance writing work that some think I may not have the disease. But my husband does 90% of domestic work while I'm typing on my tablet in bed. I still can only work 20 hours a week or less. But most don't know how much I work. She mentioned a supportive boyfriend and that she did nothing else but work, which also allowed much rest time. (By the way, how many others that she worked with knew she had it?) I bet she could also pay for someone to do her grocery shopping. I know she didn't say that, modesty would require her not to explain all the paid helpers she had. But I'm sure that helped.

I can't help but wonder why she has been silent. (I haven't seen her in anything recently, so I wouldn't think she'd be afraid of her career being affected.) No matter the reason, she's working for us now. And good for SMCI for getting her to help. (And she has a relationship with Fauci? Who knew?) Maybe the IoM report spurred her to come forward. If so, then I'm glad. Maybe there's more to come from the IoM report or from it becoming mainstreamed in medicine.

I also want to say that it's not realistic we're going to get a severely ill spokesman. A severely ill person does not have the ability to be a spokesman. And we sorely need a celebrity spokesman. I certainly don't want to discourage anyone with a name from speaking about their experience. It's the only kind of spokesman we could have.

 

[alex3619]

Two things struck me from this rather good video. The first is what was on the minds of the IOM panel about a new criteria. I have been most concerned about false negatives. So were they, but from a different perspective. I have been primarily concerned that many patients will not be diagnosed under SEID as its not sensitive enough. Their concern is that not enough patients have been diagnosed as other definitions are not being applied correctly, or are even being dismissed. I have further concerns here but this is not the thread.

The second is that Morgan Fairchild has now done some good advocacy for us at least twice. Its not just about appearing on camera for a public advocacy event, and with an impressive speech. She has helped use her contact with Fauci to facilitate further discussion. This was almost a one liner, but I didn't miss it.

Let me be clear. Prior history means I have no trust for the CDC nor SMCI. It means I look twice at everything they do. What it does not mean is that I automatically dismiss everything they do. Good advocacy is good advocacy, and so on. Its a fallacy to claim that because we do not like or trust Y, then anything Y says is wrong. Each argument has to be looked at in its own right. Indeed, if I wanted to manipulate advocates who make blanket condemnations, say I was an agent for a Public Relations firm hired by the insurance industry, it would not be hard. We need to think clearly and rationally to be effective as advocates. Passion can be our driving force, but it should not be steering us.

 

[Bob]

Tweet from Morgan Fairchild:

...DC trip has been fabulous. I felt we really made progress for ME/CFS! Great meeting with Dr. Fauci at NIH yesterday!

https://twitter.com/morgfair/status/581254582032068608

 

[Bob]

I appreciate Dr. Clayton saying, "Take it, use it, improve it." I agree. We need to get it out there and then improve it as science and experience with it reveals how to improve it. Waiting a few more years before we benefit from what the report itself does for us will only delay and possibly kill the momentum and opportunity it gives us now.

I think that's the view that I've come to now. I think we should run with this report, use it for a massive advocacy effort, and make the most of the momentum. I think the significance of the report has massive potential in terms of getting our illness taken seriously by government agencies, health authorities, medical professionals and the public. The criteria aren't perfect, and important issues are missing from the recommendations, but we can work towards fine tuning the criteria over the next few months and years, by which time more research will have been published. In the mean time, the report is a solid, robust and authoritative validation of our illness, in my opinion.

To be honest, I think our community has been behind the curve in realising the significance and potential of this report. I think this is because we were so sceptical of, and resistant to, the process, that we couldn't welcome it with open arms; we had to carefully and cautiously assess it and its potential implications. Now I think we need to move forwards and start to organize positive advocacy efforts.

For those who want the ICC adopted, I'm sympathetic to your needs, but I've come to the view that the advocacy efforts against the IOM report are counter productive, at the current time. If you advocate for the ICC to be adopted alongside the IOM criteria (rather than instead of), then I'm with you, otherwise I can't support your efforts. That's just my view of course.

 

[alex3619]

I have many misgivings about the process, including that they want to use it again. Yet this is an historic opportunity, one like we have never had. This is the only serious political change we have had in decades. We can decide to advocate for things that have failed to be accepted or acted on for decades, or we can seize the opportunity and use the IOM report even if we cannot fully endorse it. Its not about making this our holy book. Its about using it to create real change.

Something else also exists as an option here. We don't have to use the IOM report, but we can operate congruently to make similar demands, at a time when the report is fresh in the minds of our target audience.

Is this the time to admit I used to have a crush on Morgan Fairchild? Because I think its coming back. I hope she continues to advocate for us.

 

[Bob]

I have many misgivings about the process, including that they want to use it again. Yet this is an historic opportunity, one like we have never had. This is the only serious political change we have had in decades. We can decide to advocate for things that have failed to be accepted or acted on for decades, or we can seize the opportunity and use the IOM report even if we cannot fully endorse it. Its not about making this our holy book. Its about using it to create real change.

Interesting thoughts, Alex. I think that's the view I've come to now as well.

Something else also exists as an option here. We don't have to use the IOM report, but we can operate congruently to make similar demands, at a time when the report is fresh in the minds of our target audience.

Indeed. We don't even have to support or endorse the IOM criteria, but we can hitch a ride on an advocacy bandwagon, and make the most of its momentum to push for recognition and funding. After we get the recognition and funding then we can push for other changes. Keep the moment rolling.

 

[Bob]

Is this the time to admit I used to have a crush on Morgan Fairchild? Because I think its coming back. I hope she continues to advocate for us.

lol, that's two of us who have gone all sentimental! I had a (purely platonic) crush on all the speakers yesterday!

 

[usedtobeperkytina]

The idea that we shouldn't use the name or criteria until it's perfect is going to hurt us because 1. How long will we linger in status quo until perfect is decided on and vetted, validated, etc. and 2. We disagree on what is perfect.

I wish it weren't true, but the science is not clear enough yet for all to agree on what is perfect.

We need a revolution. However, change in most cases happens by evolution. Especially is this true when we're talking about changes in cultural attitudes. A big authoritative document won't immediately change thinking. Women's equality, black person's equality, etc. The law forced behavior, but it's exposure and education that changes the attitudes. This report, with the name and criteria, can be another step forward in changing attitudes.

To be honest, I'd like to claim some gains. It's like my investing strategy. I own some stock in my husband's former company. Every time the stock for that company goes up $5, I sell some of it. Then when it goes up $5 more, I sell some more of it. I then turn it into a target retirement date fund that is less gain, but less risk. This way, I capture the gain all along the way. Would it be better to just keep it all in that one company stock? Well, if it continues to go up, yes. but if it goes down, it was best I shifted some of it into a mixed fund.

So I capture my incremental profits on some of it so I won't lose that if that company turns south.

In a similar way. I say we institutionalize or capture the gain the IoM report gives us at this time or we risk having no gain. Once that gain is captured, secured, we work to gain more.

 

[geraldt52]

...Prior history means I have no trust for the CDC nor SMCI. It means I look twice at everything they do. What it does not mean is that I automatically dismiss everything they do. Good advocacy is good advocacy, and so on. Its a fallacy to claim that because we do not like or trust Y, then anything Y says is wrong...

Words to live by.

I've also had nothing but bad things to say about the CAA for many, many years...but, it's important to acknowledge that people who you consider not to be friends can do good things, and we should step up and say so when they do...and that people who you consider to be friends can do bad things, and we should step up and say so when they do.

 

[Ember]

I won't fault Dr. Clayton for her effort, but I was disappointed by her presentation. She mistakenly called the IOM definition a research definition and characterized “a lot of the other diagnostic criteria” as “all about research, not about clinical.” Having ignored the CCC and ICC, she admitted to “slightly overstating it.”

Dr. Clayton recommended that anyone meeting the SEID criteria should be diagnosed with SEID and not another diagnosis. Then she pointed out that patients can have other things too. She left ICD-10 (not ICD-10-CM) to sort the problem out.

Dr. Clayton described the Committee's consensus on diagnostic criteria as “not hard” because “you can't miss it.” Asked whether doctors might misunderstand PEM and diagnose people who don't truly have it, she replied, “We tried to be very clear in terms of what we were talking about.” Asked about co-morbidities, she answered with reference to exclusions.

Sounding much like a student, Dr. Clayton described the IOM report as a “big deal” based on the effort expended: “I can't tell you how hard we worked, 'cause it was really hard work.”

 

[alex3619]

Asked whether doctors might misunderstand PEM and diagnose people who don't truly have it, she replied,

This is a problem with every major definition. It doesn't matter how clear it is to experts, what matters is how clear it is to clinical doctors. PEM as we understand it is often confused with exercise intolerance. I don't think any definition has solved this problem. This requires a massive medical education campaign. However at the moment what the US government is offering to doctors, in the CDC toolkit, is worse than nothing.

Nobody has come to grips with this yet. We really need a biomarker or several. It may be though that a dedicated PEM questionnaire might work, if one were to be developed and validated.

 

[Bob]

In the presentation Dr Clayton reiterated that SEID is a diagnosis "to be made" and not a diagnosis of exclusion. I think this has great potential to be used for advocacy. It means it should no longer be a waste basket diagnosis, but it makes it a specific physical illness. It's no longer CFS with associated suggestions that it's psychosomatic. It might not work like this in practice, but it can at least be used for advocacy, until there is a change in culture. It remains to be seen how patients will be diagnosed if they don't fit the IOM criteria; and I think this is something that could have been outlined in the report. But, having said that, did we want them discussing chronic fatigue in the same document that describes a specific disease? Perhaps not.

 

[usedtobeperkytina]

I think one step that can be made to help others understand PEM is to use different terminology. And I made a comment to the IoM committee to use different terminology for this symptom. They didn't and didn't explain why. But, new terminology is developed by someone starting to use it, then another, then others. So, I'm going to start. I'm calling it activity or stressor-induced sickness symptoms. ASISS. I spoke with a researcher who said it really is "the sickness symptoms" and that gives clues to the pathophysiology. What causes the sickness symptoms when you get sick with the flu? (I'm not talking about the respiratory part, the other symptoms.) He said "sickness symptoms" has a recognition among doctors. In fact, it can be explained in two sentences: It's when normal living activity or a body stressor induces sickness symptoms within hours or up to three days of that activity or stressor. These symptoms may include headaches, mental "fog," body aches, debilitating fatigue, nausea or other symptoms normally seen when someone is sick with a system-wide infection.

See how simple that is? It's much better than "PEM." If we start using more precise terminology, we can educate the public and doctors on this unique symptom.

 

[usedtobeperkytina]

One thing I like about this terminology I will start using is that the public understand what being sick is like a lot more than what "malaise" is like.

 

[eafw]

He said "sickness symptoms" has a recognition among doctors.

They already call this "sickness behaviour", which is unfortunate because they don't mean it in the ususal sense that someone would be choosing to be like that. It also isn't really the same as PEM, though some aspects of PEM for some people are similar to the infective symptoms you describe.

 

[Kati]

There are now simulators of contractions which are used on expectant fathers to experience labor-which allow them to become more sympathetic about their wives's labor.

A simulator of what it's like to have post exertional relapse symptoms.
Sickness behavior and stress-induced sickness symptoms are simply synonyms of malaise. In my opinion it will not change a thing.

 

[Nielk]

I think one step that can be made to help others understand PEM is to use different terminology. And I made a comment to the IoM committee to use different terminology for this symptom. They didn't and didn't explain why. But, new terminology is developed by someone starting to use it, then another, then others. So, I'm going to start. I'm calling it activity or stressor-induced sickness symptoms. ASISS. I spoke with a researcher who said it really is "the sickness symptoms" and that gives clues to the pathophysiology. What causes the sickness symptoms when you get sick with the flu? (I'm not talking about the respiratory part, the other symptoms.) He said "sickness symptoms" has a recognition among doctors. In fact, it can be explained in two sentences: It's when normal living activity or a body stressor induces sickness symptoms within hours or up to three days of that activity or stressor. These symptoms may include headaches, mental "fog," body aches, debilitating fatigue, nausea or other symptoms normally seen when someone is sick with a system-wide infection.

See how simple that is? It's much better than "PEM." If we start using more precise terminology, we can educate the public and doctors on this unique symptom.

It is simple but, it does not describe what actually happens during PEM. We feel sick all the time. When we do too much, we collapse.
This is how the ME-ICC explains it.
Post-Exertional Neuroimmune Exhaustion - PENE: a pathological, low threshold of fatigability • post-exertional exhaustion & symptom flare - immediate or delayed, & not relieved by rest with a prolonged recovery period.

 

[Dolphin]

It is simple but, it does not describe what actually happens during PEM. We feel sick all the time. When we do too much, we collapse.
This is how the ME-ICC explains it.
Post-Exertional Neuroimmune Exhaustion - PENE: a pathological, low threshold of fatigability • post-exertional exhaustion & symptom flare - immediate or delayed, & not relieved by rest with a prolonged recovery period.

I don't think Post-Exertional Neuroimmune Exhaustion would make much sense to a layperson.

I'm also not sure that the phrase "neuroimmune exhaustion" is justified: it sounds like something neuroimmune has been exhausted but I've no idea what that could be. Alternatively it's a neuroimmune-type of exhaustion but I don't think there is proof that this is the only type of neuroimmune exhaustion or that other symptoms e.g. endocrine aren't involved. Similarly I'm not sure even professionals would know what "post-exertional neuroimmune exhaustion" would be and that what they had in their head would match what patients experience.

So it may have a value when spelled out but not sure if it is that good a phrase.

 

[alex3619]

It remains to be seen how patients will be diagnosed if they don't fit the IOM criteria; and I think this is something that could have been outlined in the report. But, having said that, did we want them discussing chronic fatigue in the same document that describes a specific disease?

Its questionable they even had the mandate for proper criteria validation. Many of the failures in the report link back, in my opinion, to the poor scoping of the questions they were given to answer. They were not asked to validate any new definition, just to propose one. A strong case can be made that additional studies are mandatory.

The key part from the report is this goal:

Develop evidence-based clinical diagnostic criteria for ME/CFS for use by clinicians, using a consensus-building methodology;

Did that include a mandate to validate it? Did they have the resources to validate it? It could have had some preliminary validation using established data sets. I don't think a larger formal study was within the scope allowed though.

There are two big diagnostic concerns. False positives, and false negatives. The video made it clear they were concerned with false negatives in existing definitions. Existing definitions under current medical education are failing abysmally. Even if SEID is not great, if it starts addressing this issue then it might still be justified.

 

[jimells]

I have to wonder how many doctors pay attention to the details of disease definitions. I've seen more doctors than I can shake a stick at, and to me they always seemed to operate off-the-cuff. I've been diagnosed with boatloads of diseases that I don't actually have, and I never saw them referring to case definitions.

As far as I am concerned, the doctors will misapply any definition that is developed, while the competent researchers will continue to use definitions that work best for their circumstances, whatever they are. Patients will continue to not be diagnosed for another generation, unless some high-profit "miracle drug" is approved for treatment.

Did the NIH person say anything at all, even some bland statement about blah blah blah? The Special Emphasis Panel that reviews all the research applications for our illness is meeting in April. It will be interesting to see if they approve more applications this time.

All these different people publicly discussing this illness and saying we need research but none of them are from NIH. From them we still hear nothin' but crickets...