The celebration took place at the DeSantis building on the NSU Campus

The celebration took place at the DeSantis building on the NSU Campus

+100%-

Some quick hits from the daylong celebration of the opening of  Dr. Klimas  Institue for Neuro-Immune Medicine  at Nova Southeastern University.

The full blog of the day will be posted on the Simmaron Rising page on the Simmaron Research Foundations website.

Dean Opens the Celebration

26 JanCort Johnson ‏@CortJohnson #CFS #MECFS #Klimas – excellent turnout for conference; main room is packed with overflow rooms open…

9mCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – late tweets, Dean starts off meeting with announcement they will be opening a large research building in 2-3 years “)\

Dr. Nancy Klimas Opening Remarks

7mCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas –  Klimas says our mission is to get you better!, they are focused on the persistence; what’s keeping the disorder  going…

#cfs #MECFS #Klimas – goals for this year; electronic digitization of medical records into REDCAP; biomarker, pathogenesis (pathogen discovery)

Three recovery/recovering patients tell their stories; Dr. Peterson also gives three examples

Three recovery/recovering patients tell their stories; Dr. Peterson also gives three examples

Three Recovery Stories

#cfs #MECFS #Klimas – three recovery/recovering stories; (1) involved immune system replenishment with supplements; (2)  used xyrem/meditation/amygdala retraining…

1mCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – last recovery/recovering story (Dan Moricoli) used pacing, nutrition, acceptance, meditation, exercise

45sCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Klimas – core lessons for everyone – don’t  waste energy, wear heart rate monitor, listen to body, do yoga/meditation, enhance blood volume

Cort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – reduce stress, rest plus use what biologicals are appropriate. CFS is a damaged stress response disorder 

Connie Sol (end of talk plus private talk)

26 JanCort Johnson ‏@CortJohnson
#CFS #MECFS #Klimas Exercise study with GWI is done, team has been doing CFS/Fibro exercise /gene expression study for about 3-4 months
Expand

26 JanCort Johnson ‏@CortJohnson
#CFS #MECFS #Klimas – They do1 blood test before, one three minutes to exercise test, 1 at VO2max, 10 minutes after, 4 hours after

26 JanCort Johnson ‏@CortJohnson#cfs #MECFS #Klimas – Klimas – if you have tachycardia at rest – get saline – see if that helps; could be a blood volume issue

#cfs #MECFS #Klimas – Klimas – if you can do the exercise stuff that Connie Sol just talked about, that will help the dysautonomia

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Sol – if you find pulmonologist to do aerobic tests have them call her and she will tell them how to do the tests…

Perdomo Talk – Family Chronic Fatigue Syndrome

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – interesting question from speaker…How do you know that you or your body is stressed? heart rate/bp goes up/

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – immune system goes down, anxiety up, depression up, sleep down..in CFS is much worse

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – found that partners are very important in reducing stress and its effects in CFS…perhaps improve immune function?

Dr.  Fletcher – Gulf War Illness Consortium

 

Natural Killer cell receptors

Natural Killer cell receptors

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – low NK cytoxicity associated w/increased T-cell activity and low T-cell functioning (!).

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – (Tcells trying to make up for low NK cell activity; failing to do so? T-cells and NK cells kill pathogens the same way – both hit hard in ME/CFS..)

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Fletcher – need to apply stress to ‘toxic’ mouse model for GWI in order to get access to biomarkers

Gut

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Fletcher – same thing they do with exercise with ME/CFS patients…need to stress the patients to get the response…

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – examining two potential leaky gut syndrome biomarkers called LPS and iFABP; much increased in small group tested

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – used the pilot data to get a NIH grant to study these markers in the Good Day Bad Day Study….

Broderick Talk (Plus Private Discussion) – Gulf War Illness Consortium

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – feels they’re getting at the drivers of symptom severity in GWS; has to do with immune and brain functioning

 

Small changes in IL-1 at rest in GWS lead to huge changes during exercise

Small changes in IL-1 at rest in GWS lead to huge changes during exercise

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Broderick finds small changes in IL-1 at rest result in huge changes in immune activation in GWS during exercise…

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – suggests if they can quiet this cytokine early may be able to stop the immune explosion later

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Broderick loves diversity and direction of Klimas team at NSU; says its a GREAT working environment

Big Consortium Grant

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Broderick very excited about future; just scored a $4 million dollar Gulf Consortium grant involving 8 institutions

#cfs #MECFS #Klimas -heading up to Washington next month to try and do the same for ME/CFS 🙂

Animal Models

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – been developing two animal models for GWS Consortium, one by exposing mice to sarin and then applying/(reducing?) cortisol

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – trying to create rodents that look like GWS patients….they will tweak mouse until its neurochemistry looks like GWS

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – these mice have huge IL-2, IL-4, IL-5 response to stress…same as occurs with GWS; very quickly getting good mouse to data fit; was surprised at how quickly it started to come together

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – They’ll get some nice data on leaky gut biomarkers in an upcoming study (CAA microbriome Gut study should be out soon)

Resting State is Way Off in Chronic Fatigue Syndrome

Borderick’s models suggest that, contrary to GWS, some insult is pushing CFS patients so hard that their bodies essentially do not have a ‘resting point’; hence the difficulty achieving true rest and relaxation

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Broderick – suggests humans have alternate resting states…..GWI patients have a ‘resting’ state closer to healthy…

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – CFS patients ‘resting state’ is WAY off normal; believes their systems are still being pushed away from normal by something

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – some insult is still operating in ME/CFS; does not believe that’s true in GWS; their systems simply got shifted

Men and Women With ME/CFS are Very Different

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Broderick -translates sex hormone-stress hormone interactions in men andwomen; vastly more complex in the Venetians 🙂

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – requires one ‘circuit‘ to model primitive male hormone -stress hormone interactions; requires 4 circuits for women

 

Brodericks models suggest male and females may have different types of chronic fatigue syndrome

Brodericks models suggest male and females may have different types of chronic fatigue syndrome

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Broderick – men and women with ME/CFS have VERY different immune/hormone signatures; they are different subsets!

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Broderick 18 yr old women- 2 years CFS – different endocrine-immune signatures than 50 yr old females w/ 20 yrs CFS
Expand

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Broderick: duration of illness causes changes; menopause causes changes..younger women with recent onset and older women with ME/CFS with earlier onset are different subsets!

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – and will probably need treatment approaches; men/young women/older woman – all showing up very different in models

Dr.Mady Hornig – Infection, Autoimmunity and Illness

Big Picture

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Hornig is giving lecture from her computer in New York City…she’s not at the meeting itself..

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – believes genes, environmental exposures (ie infection) and timing are critical for many disorders….

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – questions whether environmental exposure to the fetus in the mother could translate to CFS decades later..

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – exposures could happen later when adults but notes that prenatal exposures appear to effect many illness including MS

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Hornig notes smoking POT during adolescence causes increased risk of psychosis in individuals with certain gene makeup, smoking POT later does not cause increased risk; its a timing thing.

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – say EBV is trigger for CFS but not in everyone; questions which genes create vulnerability for those who get CFS

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Autism, Schizophrenai, narcolepsy, anorexia nervosa, downs syndrome, FM, CFS all may have immune cause

Autoimmunity

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – heat shock proteins and complement C4 very important in these diseases; stress induces activation of these proteins….(both complement and HSP are….

 

Autoantibodies attacking heat shock proteins could play a role in chronic fatigue syndrome

Autoantibodies attacking heat shock proteins could play a role in chronic fatigue syndrome

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – implicated in CFS. Autoantbodies appear to be targeting HSP/complement in animal models. They are trying to pursue these

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – ideas in CFS…heat shock proteins may be key player…NMDAR – glutamate, interferon  others may play role

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas -Hornig -able to normalize mouse behavior by removing IgG autoantibodies

Gut

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – where do autoantibodies arise? Don’t know but are looking at gastrointestinal tract..if ileum is damaged, antioxidants

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – may not  be taken up through gut…appears to be tied to autoimmunity….that may impair blood:brain barrier…

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – impaired blood brain barrier gives all sorts of substances access to the brain…..

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Hornig found small intestine in autism patients not  able to take in nutrients; enzymes almost non existent

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Hornig very big on intestinal microbiome – essential to understand how it effects energy, cognition, sleep

Chronic Fatigue Initiative Studies Underway

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas -CFI is engaged in 4 ME/CFS studies one of which is a 400 patient/400 control study with Montoya at Stanford

 

Dr Hornig was particularly excited by the joint Chronic Fatigue Initiative/ Simmaron Foundation spinal fluid study underway

Dr Hornig was particularly excited by the joint Chronic Fatigue Initiative/ Simmaron Foundation spinal fluid study underway

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Hornig focuses on Peterson/Simmaron spinal fluid study – calls it absolutely unparalleled with regard large number of

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – of superbly characterized subjects; calls it a unique opportunity. Patients helped fund this study!

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Peterson/Simmaron spinal fluid data also helped Aussie research group PHANU get major grant.good spinal fluid in Reno!

26 JanCort Johnson ‏@CortJohnson

#cfs #MECFS #Klimas – Hornig ends talk by noting ulcers were once thought to be caused by stress – later revealed to be caused by bacteria

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Hornig gives a very interesting presentation…Klimas says she loves to see this level of researcher participating in CFS

Dr. Dan Peterson – New Understandings, New Treatments

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Klimas calls Dr. Peterson a very good friend and with big smile introduces him

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – New Paradigms in treatment….says Translational medicine is hope for the future

Potential Chronic Fatigue Syndrome Market

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – with 1 million patients says a biomarker potential value – 100 million dollars a year

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Progeria effects 1 in 8 million children with just 100 children identified by a robust program has been developed…

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – but little for ME/CFS.

Translational Medicine

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Peterson talks about translational research, focuses on shared data, large sample sizes, decreased costs

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – notes CFI’s large Biobanks, praises CAA’s commitment to translational research, lauds low budget CAA blood flow study

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – that does research and tests three interventions, believes there never will be a unique test- CFS because of subsets

Treatment

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Peterson – overtreatment is common; CDC study showed CFS patients take 2x’s as many drugs as other chronic illnesses

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Peterson – CBT/PACING/Graded Exercise – are all useful so long as you have the right person applying them

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Supports therapeutic exercise…breathing exercises…never saw any patient who couldn’t at least stretch..

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – recommends patients get back their conditioning; said he was a big believer in that….

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Peterson still looking forward to CMX-0001, oral version of CFIDOVIR, drug is going through trials in other disorders

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas having success in some patients with hyper-alimentation, goes over antivirals, IVIG, ampligen…then 3 recovery stories

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – one with valtrex/IVIG ; one with Vistide, IVIG and Freamine and a surgeon, who’s now working full time after Ampligen

Question Period

6 JanCort Johnson ‏@CortJohnson#cfs #MECFS #Klimas – what about epistudy showing increased rates of cancer? Levine hasn’t seen it in her practice but its a possibility

26 nCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Peterson says10 year followup showed increased incidence of cancer and brain tumors in zip code areas; ( maybe but not necessarily due to CFS) -is getting followup

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – ? for Peterson/ methylation pathway? Say;s he used to test for it but now he just assumes it’s off. Say’s most patients anaerobic systems comes on at 90 beats per minute heart rate

Klimas on Exercise

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Klimas asked “why are you supporting exercise?” notes exercise is hot button issue, that some countries will only pay

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – for CBT and exercise…..states there isn’t a greater advocate for the biological aspect of CFS but exercise and CBT

 

Dr. Klimas reported that in her experience if done very carefully and slowly that 'exercise' helps

Dr. Klimas reported that in her experience ‘exercise’, if done using a heart rate monitor with frequent breaks and done lying down or sitting, helps

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – are good for you if you have CFS, cancer, etc….if you have an immune mediated condition then these things are good

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – for you. So many people want a magic pill but this is a process; in HIV the first antiviral didn’t work…2nd didn’t

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – this is going to take time….in the meantime she recommends these things..

Viruses

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – ..stop activity (exercise) after 90 seconds..rest…what about reactivated viruses? Klimas says big

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – how much $ spend to find out?  Helpful to find out what viruses are activated; more helpful to boost immune system

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas – Klimas and Rey use oxymatrine to fight viruses…

26 JanCort Johnson ‏@CortJohnson
#cfs #MECFS #Klimas Klimas very interested in mast cells; mast cells react to cytokines, notes there are lots of mast cells in the brain..

 

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