Author Topic: ME CFS conference in New York 20th November 2013 relating to treatment .  (Read 2984 times)

Patricia

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Nancy Klimas, Dan Peterson, Eric Schadt, Judy Mikovits and Derek Enlander will speak
 Dr Enlander will chair the meeting at Mount Sinai in New York
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Justin Reilly

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ME Treatment Conference at Mt. Sinai, November 20, 2013
« Reply #1 on: October 29, 2013, 12:51:39 AM »
Nancy Klimas, Dan Peterson, Eric Schadt, Judy Mikovits and Derek Enlander will speak. Dr. Enlander will chair the meeting at Mount Sinai in New York. Registration is currently open.

I have contacted the office and will post as soon as they get back to me with more details.

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Justin Reilly

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Re: ME Treatment Conference at Mt. Sinai, November 20, 2013
« Reply #2 on: October 29, 2013, 12:53:42 AM »
I will attend, health permitting, probably with my folks.  I look forward to hopefully meeting some of you for the first time there.   :)
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liquid sky

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Re: ME Treatment Conference at Mt. Sinai, November 20, 2013
« Reply #3 on: October 29, 2013, 01:05:10 AM »
I would love to attend, but too far for me to try and travel. Take good notes and let us know what happens, please.  :)

Patricia

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Re: ME CFS conference in New York 20th November 2013 relating to treatment .
« Reply #4 on: October 29, 2013, 12:48:01 PM »
ME CFS Conference 2013

ME CFS Center,  Mount Sinai School of Medicine

                   New York                     

 N
ovember 20th  11am 

Academy of Medicine
                         

1215 Fifth Avenue
                           

New York NY


Registration fee :      Physicians and Researchers     $150                                 

Patients                                      $50

 

11.00   opening   Chairman  Derek
Enlander

11.10  Eric Schadt  Genetics  The Power of the gene in diagnosis and treatment 

11.45 questions

11.50 Dan Peterson, Simmaron Foundation, Reno , Nevada

New approaches in ME CFS Therapy

12..25 questions

12.30 Lunch


1.15 Judy Mikovits   Virology ...  Faux Pas and New Concepts


1.40  questions


1.45 D
erek Enlander   Diagnosis & Therapy  from Ramsey 1955 to VanKonynenberg Methylation cycle 2011 to Mello and Retuximab 2013

2.25 questions

2.30 Nancy Klimas, Institute for Neuroimmune Research, Nova Southeastern, Ft. Lauderdale, Fl New Thoughts on Immunology in ME CFS 

3.10 questions

3.15 Panel discussion....  all speakers plus Christian Becker(Sinai PEM Study)  and Frank Rusetti (NIH)

3.55 sum up   Derek Enlander

4.00 conference end
« Last Edit: October 29, 2013, 12:51:41 PM by Wildaisy »
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floydguy

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Re: ME Treatment Conference at Mt. Sinai, November 20, 2013
« Reply #5 on: October 29, 2013, 06:22:09 PM »
I will attend, health permitting, probably with my folks.  I look forward to hopefully meeting some of you for the first time there.   :)

I won't be around for this one but I think I saw/met your pop at the last one!

Justin Reilly

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Re: ME Treatment Conference at Mt. Sinai, November 20, 2013
« Reply #6 on: October 30, 2013, 04:00:55 AM »
I won't be around for this one but I think I saw/met your pop at the last one!


Great!  He was probably wearing a Bowtie as usual? 


That conference was a turning point for them.  They didn't understand anything, which was great, because they needed to experience ME being taken seriously by serious researchers speaking medical gobbledygook at a major teaching hospital to take ME and me seriously.
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Patricia

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Re: ME CFS conference in New York 20th November 2013 relating to treatment .
« Reply #7 on: November 19, 2013, 12:32:27 AM »
Is anyone on mecfsforums going to this conference?  If so, will you tell us about it?
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Sjjohnny

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Re: ME CFS conference in New York 20th November 2013 relating to treatment .
« Reply #8 on: November 19, 2013, 02:35:01 PM »
http://finance.yahoo.com/news/hemispherx-biopharma-sponsors-chronic-fatigue-130000425.html

Hemispherx Biopharma Sponsors Chronic Fatigue Syndrome Conference at Mount Sinai Medical Center in New York

Clinical and research experts will present information on current treatment options, including the most promising experimental drugs and the latest research findings, that provide insights into the diagnosis of this disorder. The speakers include Dr. Nancy Klimas, Institute for Neuro Immune Medicine at Nova Southeastern University; Dr. Daniel Peterson, Sierra Internal Medicine; Dr. Judy Mikovits, Dr. Eric Schadt, Institute for Genomics and MultiScale Biology at Mount Sinai Hospital; and Dr. Derek Enlander. The Q&A panel being held during the symposium will include Dr. Francis Ruscetti, National Institute of Health and Dr. Christian Becker, Critical Care Medicine in New York.
.
.
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Justin Reilly

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Re: ME CFS conference in New York 20th November 2013 relating to treatment .
« Reply #9 on: November 20, 2013, 11:10:10 PM »
I just got home from the conference. It was great (though had never been to one before so I can't really say). Best part was meeting some people I had wanted to meet for a while especially my hero Hillary Johnson, also Jen Brea, Jeannette and Eileen Holderman.


It seemed like Mt. Sinai and Klimas were doing some great work collecting much bigger data sets on various abnormalities after exercise and mapping out the connections between them which should advance the science.

I had no idea what Dr. Mikovits was saying, but she sounded very convincing!

Chris Cairns was there so we should be getting a blogpost soon.  Jeannette and Jen Brea tweeted.  My head was/is too mushy to write about it.
« Last Edit: November 23, 2013, 02:42:42 AM by Wildaisy »
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floydguy

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Re: ME CFS conference in New York 20th November 2013 relating to treatment .
« Reply #10 on: November 20, 2013, 11:20:55 PM »
I just got home from the conference. It was great (though had never been to one before so I can't really say). Best part was meeting some people I had wanted to meet for a while especially my hero Hillary Johnson, also Jen Brea, Jeannette and Eileen Holderman.

Chris Cairns was there so we should be getting a blogpost soon.  Jeannette and Jen Brea tweeted.  My head was/is too mushy to write about it.

Thanks for the update Justin.  I totally agree with the Private Foundation part.  It is so clear the government has had no interest in this disease so I've long had this position as well.  It's done nothing but get in the way and cause mischief.

Look forward to hearing more - Chris always does a pretty good job.  Wish I had been able to go....
« Last Edit: November 23, 2013, 02:43:43 AM by Wildaisy »

Justin Reilly

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Re: ME CFS conference in New York 20th November 2013 relating to treatment .
« Reply #11 on: November 21, 2013, 02:06:35 AM »
saw Simon Wessley's name tag on the table at Mt Sinai. I asked if he really was coming and the woman said yes. But didn't see him or anyone else with Bozo the clown hair.

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Justin Reilly

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Re: ME CFS conference in New York 20th November 2013 relating to treatment .
« Reply #12 on: November 21, 2013, 02:49:09 AM »
]Jeannette has good tweets on the conference

https://mobile.twitter.com/JKBurmeister/tweets
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Justin Reilly

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Re: ME CFS conference in New York 20th November 2013 relating to treatment .
« Reply #13 on: November 21, 2013, 04:24:39 AM »
Jay Spero filmed it with multiple cameras, so there will be a DVD at some point.
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Patricia

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Re: ME CFS conference in New York 20th November 2013 relating to treatment .
« Reply #14 on: November 21, 2013, 06:08:42 AM »
Jeannette Burmeister Tweets:

 #MECFS HillaryJohnson question for Ruscetti. Are ppl at NCI still showing interest in connection btw ME and cancer? Ruscetti: Fauci, Collins, Varmus have NO interest in this disease!!! Sequestration will make things worse. Unpopular diseases will have an even harder time to get money. Private foundations is where it's at.     
   
 #MECFS Gupta talking about location effect. Extreme stress/trauma: some conditioning happens in brain. Limbic system/brain makes mistake and over responds  and keeps creating immune response even after insult is over. Keeps battling insult that does no longer exist. Gives opportunistic viruses a chance to take hold. When shift environment, brain has no frame of reference and immune system can reset. (Not sure I got that right)   
 

#MECFS Dr. K: it's all about studies. If there is only $3 mill per year in research money, who will do validation studies? W/o that, study won't catch on. Grant money not given for validation studies, typically. Also need business partners who will market biomarkers.     


  #MECFS Dr P: several abx = cytokine blockers. That's why sometimes patients feel better on abx.


# MECFS Questions: Any other doctors (besides Enlander) prescribing MAF? Klimas: no. Peterson: no.


#MECFS dr. P: interferon made everybody really sick.  Tried years ago. ... Concept of flogging immune system w/ current treatments (cont……cont) --> viruses go into remission --> immune system turns off. Simplistic explanation.
 
Dr. E: MAF normalized the immune system. It doesn't stimulate it. #MECFS


Dr. K: #MECFS CPET 4 hours: BP, pain, oxidative gene expression. Not so much immune gene expression at that point.

Dr. K: #MECFS CPET 15 minutes: ten top genes are signaling for inflammation, which does not happen in healthy controls. Happening (cont…
…cont) very fast. Therefore, second trial measured at 3 min (earlier)

Dr. K: #MECFS CPET 15 minutes: failure to up regulate cortisol. Of course, patients can't exercise.


Dr. K: #MECFS CPET: in ME, not a lot differences in gene expression at time 0 (unlike in GWI).


Dr. K: #MECFS It's not just that cytokines are abnormally expressed. It's also about how they talk to each other.


Dr. K: #MECFS IL 5 mediates abx production. Affects autoimmunity.


Dr. K: #MECFS Neuropeptide Y is a strong biomarker.


Dr. K: #MECFS NK cell function correlates well with cognitive dysfunction.


Dr. K: #MECFS When ppl are asking when we will have biomarkers, we should answer, when will our existing biomarkers accepted?! We (cont…
…cont) have plenty of biomarkers.


Dr. K: #MECFS NK cell function is a much better biomarker than PSA for prostate cancer.


Dr. Klimas: Clinically you can't tell GWI and ME apart. Gov't giving $60 mill to GWI. Only $3 mill to ME.


Jay Spero asking brilliant q. about 1-day vs 2-day test. Dr. Becker's reply: 24, 48, 72-hour time points for blood draws. Dr. E: (cont…
…cont) study designed 2 years ago. Didn't know then that two days of testing was key. (My comment: frustrating!)


Dr. E: GET can produce adverse results. Enlander study of PEM trying to disprove PACE and NICE.


Dr. E: SPECT scan abnormal area = limbic system. Effects on cognition, emotional life, sleep, memory formation.


Dr. E: Judy's research helped tremendously even though disproven later b/c of media coverage for disease.


Dr. E: Kerr (who dropped out of field and he hasn't heard from him I a while. Kerr lost his position at London hospital.) started (cont…
…cont) abnormal-gene-expression research in ME. Was hoping to develop diagnostic test.


Dr. E: tx for methylation-cycle issues: BetaMax, Lectelyte, Catapult, immunoprop, immunoplus


Dr. E: hepapressin derived from kutapressin. Initially used against shingles virus.


Dr. E: HHV-6 discovered in '86 by Ablashi. Two types. A and B. Very potent virus. Can go places that other viruses can't. E.g., heart.


Dr. E: every major chronic illness comes with secondary depression. But nobody would suggest that lymphoma, e.g.,is a psychological (cont…
…cont) disease even if accompanied by depression.


Dr. E: Some ppl in England have made a career in claiming that it's psychological.


Dr. E: This is a physical disease. It is NOT a psychological disease!!!


Dr. P: likes Vistide because easily controlled (b/c given via IV) and toxicity easily monitored. Valcyte often not well tolerated. (cont…
…cont) Valtrex for herpes simplex.


Dr. P: 15% of his patients have active herpes infections. He treats with Valcyte, Vistide, Valtrex.


Dr. P: aggressive tx has the most chances of success.


Dr. P: priorities: urgent health issues, co-morbid condition s, disruptive and disabling symptoms.


Dr. P: Lipkin cytokine findings: cytokines are amenable to tx.


Dr. P: Rituxan response in Norwegian trial relatively moderate. Re-tx required. 4/15 patients had lasting effects. Very expensive drug.


Dr. P: Synergy trial: Ritalin. 120 participants at 4 sites.


Dr. P: Valcyte often not tolerated. Needs to be taken over long time. For ppl who tolerate it, moderate efficacy. If no side (cont…
…cont) effects, it probably has no effect.


Dr. P: 70% of patients had partial or full response to Vistide.


Dr. P: retroactive Vistide "study" (analysis). Dramatic improvement on VO2 max and NK cell function.


Dr. P: CMX001 broad-spectrum AV. Very safe and effective. Oral form of Vistide.


Dr. P: Ampligen open-label, compassionate program. Patients require prolonged tx (2 years) and ret-reatment. About 70% of ppl return (cont…
…cont) to pre morbid state.


Dr. P: Immunovir not licensed in US, but some ppl find ways to import


Dr. P: Ampligen is the only drug that has potential of returning ppl back to work.


Dr. P: most common finding is immune dysfunction.


Dr. P: Ampligen approved in Canada, but not US.


Dr. P: Almost all patients have unrefreshing sleep.


Dr. P: always starts with low dose of drugs because patients are more sensitive to drugs.


Dr. P: higher percentage of brain tumors and lymphomas in long-term patients.


Dr. P: always starts tx with what's most troubling. Then co-morbid conditions (e.g. hypothyroidism).


Dr. P: he's tired of talking about disease criteria. We need to move on.


Dr. P: drug trials need to be large, need endpoints and need well-defined patient groups.


Dr. P: Well documented, validated endpoints needed for drug approval.


Dr. P.: high degree of disability.  average income $15k. Food insecurity.


Dr. P: drug development takes 8-15 years.


Dr. P: biomarkers not necessary for drug approval.


Dr. Peterson @ Enlander conference: evidence-based medicine is a problem b/c there is little of that in ME/CFS.



« Last Edit: November 21, 2013, 06:30:00 PM by Wildaisy »
Never be bullied into silence; speak your truth even when your voice shakes.