CDC PCOCA conference call on 2/23/2015 with Dr. Montoya and Dr. Unger

[searcher]

Thanks, great!

BTW, that obnoxious news clip from KOAT 7 is my local ABC Affiliate. Local advocates have absolutely broiled the station. KOAT took the clip down very quickly, but that is NOT enough!

Sushi

Similar to the Dr Shorter articles, I found that clip so over the top I actually laughed. There is no way that any of the reporters even read page 1 or the summary of the IOM report. Are they often that uninformed when they are talking about other topics?

 

[Sing]

Dr. Unger was asked how the CDC is planning on responding to the IOM report. She said they are waiting until HHS reviews it, and then they will change their website and educational information for clinicians according to what the HHS decides.

She was also asked about the 30 or so samples which Dr. John Chia had sent in last Sept, 2014. She said that their lab which checks enteroviruses has been busy with another outbreak but will be able to check his samples starting next month in March.

Dr. Montoya was asked for his response to the IOM report. He appreciated it first of all for calling this a disease. This will greatly help with doctors and the research community. He also appreciated that the definition is no longer one of exclusion, so that patients won't have to wait for years and go to doctor after doctor to be tested for all kinds of things first. Thirdly he appreciated that IOM called for a lot more research funding but was disappointed that they did not name a number. He thinks that $100 million in the hands of the best researchers, using the best techniques, would crack the code (my phrase) of this illness. Perhaps he meant as a yearly budget, I am not sure.

As for the details of the research underway which he spoke about, I am not sufficiently familiar with it all to know if there was much new information in what he had to say. My impression was that there were some new points. Those very familiar with the current research will be able to pick up what is new, and I hope you will let the rest of us know

 

[Sushi]

Are they often that uninformed when they are talking about other topics?

This was the early morning news and talk crew--to me the lightest weight of the news team--I usually cringe when I hear their teasers. I had heard the build up to that clip for a few days and was thinking "Oh no! What are they going to do?" but since they took it down so fast I had never seen the actual clip. Thanks for archiving it--awful! But we have some great local advocates and it gave them ammunition.

Sushi

 

[WillowJ]

Perhaps he meant as a yearly budget, I am not sure

I think he specified this was meant as a yearly budget.

 

[NK17]

Something additional Dr. Montoya mentioned that I hadn't heard before - and I couldn't quite catch all he said because his accent was so heavy (although he was very articulate!) - was that they had found a 100% correlation between ME/CFS/SEID and an illness called Systemic Inflammatory Response Syndrome (SIRS)* in some important aspect (cytokines or some other immunological profile??).

*http://en.wikipedia.org/wiki/Systemic_inflammatory_response_syndrome

I think that Dr. Montoya said that there's is 100% similarity between ME/Cfs-SEID and SIRS.
This is a big news and I suggest to go read about SIRS on the web.
He also said that the inflammation is systemic and gets worse as time goes by.
IMO we'll see these strong scientific statements confirmed by Dr. Lipkin's and Dr. Hornig's soon to be published study (for which they used patient's specimens also from Montoya's clinic @ Stanford).

 

[WillowJ]

Happy to do so. I wish I could have taken more.

I agree it was a little confusing. It seemed like he thought it wasn't contagious except in its epidemic form, so family members/friends shouldn't be worried about catching the illness from patients. Even the epidemic form is not necessarily contagious, but I am not sure what he thinks the cluster outbreaks are (i.e. particularly virulent virus, environmental toxin, etc.)

He said it was not unprecedented for a disease to exist in both epidemic and endemic forms.

Also said he was aware this would be "starting fires" to talk about it that way.

Said there were some cases he couldn't mention because of patient confidentiality where people passed the disease to close contacts, but this was highly unusual (Dr. Chia gives much the same answer to this question): in most cases family and such close contacts of ME/SEID patients do not get ill with ME/SEID.

So in general patients who did not get the disease during epidemics should not be afraid of passing it on, and people in general should not be afraid to be around people with this disease.

 

[NK17]

He said it was not unprecedented for a disease to exist in both epidemic and endemic forms.

Also said he was aware this would be "starting fires" to talk about it that way.

Said there were some cases he couldn't mention because of patient confidentiality where people passed the disease to close contacts, but this was highly unusual (Dr. Chia gives much the same answer to this question).

So in general patients who did not get the disease during epidemics should not be afraid of passing it on, and people in general should not be afraid to be around people with this disease.

This is a core and thorny issue and I applaude Dr. Montoya for speaking his mind.

 

[nandixon]

Something additional Dr. Montoya mentioned that I hadn't heard before - and I couldn't quite catch all he said because his accent was so heavy (although he was very articulate!) - was that they had found a 100% correlation between ME/CFS/SEID and an illness called Systemic Inflammatory Response Syndrome (SIRS)* in some important aspect (cytokines or some other immunological profile??).

*http://en.wikipedia.org/wiki/Systemic_inflammatory_response_syndrome

The similarity to SIRS that Dr. Montoya mentioned may actually be related to gene expression findings - what Cort tweeted about in March of last year from the Stanford Symposium for Chronic Fatigue Syndrome (in the tweet, I think Cort may be calling SIRS "systemic inflammatory syndrome," which I bolded):

Gene Expression Results Indicate Pro-Inflammatory State is Present

“there is genomic evidence of a chronic inflammatory state in the blood of ME/CFS patients”

#CFS#ME/CFS Stanford – Ron Davis’s lab does gene expression on 200 patients and 400 healthy controls, 25 million data points!

#CFS #ME/CFS Stanford – finds hundreds of genes differentially expressed in ME/CFS vs healthy controls

#CFS #ME/CFS Stanford – then they compare the gene signature found in hundreds of other disorders to see which disease MECFS is closest to

#CFS #ME/CFS Stanford – ME/CFS scores a close match to ‘systemic inflammatory syndrome’ – it’s an inflammatory disorder

#CFS #ME/CFS Stanford – other diseases the MECFS gene expression results are similar to are a parasitic disorder, disorders caused by

#CFS #ME/CFS Stanford – … gram-negative bacteria and lentoviruses, etc.; all inflammatory disorders

#CFS #ME/CFS Stanford – many genes highlighted, notes high ubiquitin and interestingly, gene associated with Sjogens Syndrome and lupus.

http://www.cortjohnson.org/blog/2014/03/20/tweeting-stanford-symposium-chronic-fatigue-syndrome/

 

[Never Give Up]

The similarity to SIRS that Dr. Montoya mentioned may actually be related to gene expression findings - what Cort tweeted about in March of last year from the Stanford Symposium for Chronic Fatigue Syndrome (in the tweet, I think Cort may be calling SIRS "systemic inflammatory syndrome," which I bolded):


http://www.cortjohnson.org/blog/2014/03/20/tweeting-stanford-symposium-chronic-fatigue-syndrome/

Interestingly the Open Medicine Foundation's End ME/CFS scientific advisory board includes one Ronald G. Tompkins:

"Ronald G. Tompkins, MD, ScD: Dr. Tompkins has a very broad knowledge of trauma and metabolism. He ran the large NIH-funded Glue Grant for Inflammation and Host Response to injury in Humans, a large-scale collaborative research program that generated and analyzed likely the largest data set ever collected on humans. There seems to be a relationship between trauma and ME/CFS, possibly being triggered by or putting the body into a constant state of trauma. Dr. Tompkins is skilled at getting a diverse group of scientists and doctors to work together and collaborate. Having him on the Advisory Board is instrumental to successfully managing such a big project.

Dr. Tompkins is a Professor of Surgery at the Harvard Medical School. He is also Chief of Trauma, Burns and Surgical Critical Care Service at the Massachusetts General Hospital and Chief of Staff at the Shriners Hospitals for Children in Boston. Dr. Tompkins is a leading trauma and burn physician and trauma specialist at the Massachusetts General Hospital.
https://ccib.mgh.harvard.edu/tompkins/pi_bio
http://cem.sbi.org/web/people-tompkins.htm

His work seems to be related to the sepsis theory.

Anecdotally an ICU nurse responded to a recent Medscape article entitled "Chronic Fatigue Syndrome: Wrong Name, Real Illness" thusly:

Janice Schuette| Registered Nurse (RN)6 hours ago
I've wondered if Chronic Fatigue syndrome could be a sub-clinical form of SIRS. As an ICU RN, I've seen many 'septic' pts without identifiable infectious organisms or other definitive triggers. While pts who have extreme drops in BP and/ or oxygenation wind up in the ICU, there must be pts who have normal BP (but low for them) and other problems related to an over active immune system that may have been triggered by a recent illness. The relatively low BP and relatively low oxygen levels would cause fatigue and poor activity/ exercise tolerance.

Intriguing...

 

[Never Give Up]

In addition to being intrigued by the SIRS/sepsis theory I am also:

Relieved that someone, the CDC, is finally going to study homebound ME/CFS/SEID patients.

Elated that the CDC and HSS will work together to create a medical school curriculum, based on the IOM report, to teach the upcoming doctors how to recognize and diagnose ME/CFS/SEID. It will include scripts for "standardized patients", AKA actors pretending to have the disease, for medical students to practice on.

Dismayed that Dr. Unger noted that their fully funded and approved studies of adolescents were only 19% complete due to difficulty finding ME/CFS adolescents to participate- I've got one, how do I sign him up?

Thrilled that Dr. Montoya urged funding levels of $100 million no less than 3 times.

Excited that the CDC expects to begin looking at Dr. Chia's samples in March.

Pleased to hear that the CDC website will be updated in due time, and that a link to the IOM report will be added soon.

Overall it seems that things are moving forward. Dr. Unger seems to get it and be genuinely working to help patients. Stanford is on the case and making progress. I look forward to hearing new research results. Cort Johnson reported recently that Dr. Montoya expects to pull in $10-20 million in grant money this year.

 

[Anne]

Thanks for your post, Never Give Up!

Overall it seems that things are moving forward. Dr. Unger seems to get it and be genuinely working to help patients. Stanford is on the case and making progress. I look forward to hearing new research results. Cort Johnson reported recently that Dr. Montoya expects to pull in $10-20 million in grant money this year.

It's an interesting question: is Dr Unger getting it? I see signs pointing at both yes and no.

The CDC multisite study has the potential to be great and the fact that they will be studying housebound ME/CFS patients is really great (long overdue though...)

On the other hand: CDC is still using the Empirical Criteria in their studies, which is very problematic. Dr Unger has been strongly opposed to including PEM as a mandatory symptom in the criteria for ME/CFS, and she decided to only include a 1-day CPET test in the multisite study, even though research has shown that it takes a 2-day max CPET test for the abnormalities in ME/CFS patients to show up. In discussing this, she has said some things that really makes me wonder: "does she get it??"

 

[Anne]

Here's a recording of the PCOCA call:
http://www.rme.nu/sites/rme.nu/files/Updates_from_CDC_2015-02-23.mp3

 

[Gemini]

Something additional Dr. Montoya mentioned that I hadn't heard before ... that they had found a 100% correlation between ME/CFS/SEID and an illness called Systemic Inflammatory Response Syndrome (SIRS)* in some important aspect (cytokines or some other immunological profile??).

Interestingly just before that he said Sed rate and CRP, often normal in ME/CFS, are outdated tests for inflammation.

I wonder if they've come up with a new test/panel for inflammation?

 

[Valentijn]

Interestingly just before that he said Sed rate and CRP, often normal in ME/CFS, are outdated tests for inflammation.

Even for those, my ESR is almost always elevated, and CRP was as well, when it finally got tested. Though my inflammatory response might be worse than is usually seen in ME patients - eating the wrong foods causes me visible full-body soft-tissue swelling. It's a bit of a relief, actually, to have such simple and objective proof that something whacky is happening

 

[Sing]

Thanks for your post, Never Give Up!



It's an interesting question: is Dr Unger getting it? I see signs pointing at both yes and no.

The CDC multisite study has the potential to be great and the fact that they will be studying housebound ME/CFS patients is really great (long overdue though...)

On the other hand: CDC is still using the Empirical Criteria in their studies, which is very problematic. Dr Unger has been strongly opposed to including PEM as a mandatory symptom in the criteria for ME/CFS, and she decided to only include a 1-day CPET test in the multisite study, even though research has shown that it takes a 2-day max CPET test for the abnormalities in ME/CFS patients to show up. In discussing this, she has said some things that really makes me wonder: "does she get it??"

Anne, she didn't mention in the call the details of the testing--which I suspect I wouldn't have liked. For instance I believe they are checking cortisol levels only by checking the morning cortisol level, and they are checking exercise effects on the body and mind only after one bout of exercise--that is what we heard before, and which I felt were also inadequate modes of testing.

But what I thought was good news was that she said they weren't using any one definition of "CFS"--instead, she repeated, they were relying on expert clinicians to choose the patients for the study. As for the exercise study, she also made a point of saying that Dane Cook and one other expert in the exercise area were running this part of the study. Setting it up, or interpreting result--I am not sure.

So, reliance on our experts, seemed to be her theme, at least in some respects.

 

[Iquitos]

Thanks for your post, Never Give Up!



It's an interesting question: is Dr Unger getting it? I see signs pointing at both yes and no.

The CDC multisite study has the potential to be great and the fact that they will be studying housebound ME/CFS patients is really great (long overdue though...)

On the other hand: CDC is still using the Empirical Criteria in their studies, which is very problematic. Dr Unger has been strongly opposed to including PEM as a mandatory symptom in the criteria for ME/CFS, and she decided to only include a 1-day CPET test in the multisite study, even though research has shown that it takes a 2-day max CPET test for the abnormalities in ME/CFS patients to show up. In discussing this, she has said some things that really makes me wonder: "does she get it??"

Yes, I don't trust her. She seems to be trying to straddle the fence. I don't think she actually "gets it" but is still trying to do the politically expedient thing. That means patients, advocates and researchers have to make the politics uncomfortable for her to throw us under the bus again. I anticipate the possibility that the unseen hand that has kept us as the "lepers" of CDC research still hasn't come down hard to silence and counteract all the recent progress.

And hey, what about SIRS as the new name?

 

[Scarecrow]

The similarity to SIRS that Dr. Montoya mentioned may actually be related to gene expression findings

I listened again to that part of the recording, which starts at 37:10. This is my abbreviated transcription:

"We analysed messenger RNA gene expression data from the cohorts of 200 patients and 400 controls. We compared the data to other diseases. The closest resemblance was to Systemic Inflammatory Response Syndrome; the correlation was 100%. From the Lipkin/Hornig data [yet to be published] and the Stanford data the picture that clearly emerges is that ME/CFS is indeed an inflammatory disease."

 

[nandixon]

@Scarecrow, thank you for that transcription!

 

[Gemini]

I listened again to that part of the recording, which starts at 37:10.

Thanks for posting @Scarecrow very helpful!

Around the same time Dr. Montoya mentioned rheumatoid arthritis(RA) & Lupus but I didn't catch the context.

By any chance when you listened did you hear anything about RA that might interest Professor Edwards?

 

[Scarecrow]

Around the same time Dr. Montoya mentioned rheumatoid arthritis(RA) & Lupus but I didn't catch the context.

By any chance when you listened did you hear anything about RA that might interest Professor Edwards?

This is around the 35 minute mark. Dr Montoya stated that for many years ME/CFS was viewed as a disease lacking in inflammation because ESR (which he refers to as Sed Rate) and CRP are most often normal in ME/CFS. He then goes on to say:

"However, Sed Rate and CRP are primitive and very limited indicators of inflammation. Our cytokine data [I think that is the word] contradicts the erroneous conclusion that ME/CFS is not an inflammatory disease and supports that not only an inflammatory state exists in these patients but it also opens the door for the use of anti-inflammatory drugs or biologics, as it has been done for other inflammatory diseases whose aetiology is still unknown, including in rheumatoid arthritis and systemic lupus erythematosus."