The celebration took place at the DeSantis building on the NSU Campus
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 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
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
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 and women; 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
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 Jan Cort 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
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
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 ‘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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Thanks for this, Cort – I’ll look forward to the full account on Simmaron Rising.
On the ‘exercise’ front, does Dr Peterson measure when his patients go over their anaerobic threshold, to have that figure of 90 bpm? I didn’t realise he was interested in that.
And is Dr Klimas saying that we should stick to activity of only 90 seconds in duration? Even during just daily living? How can anyone live a life 90 seconds at a time? She surely can’t be saying that (?) but this is why we desperately need a Q&A. It’s all very confusing and 99.99% of patients are going to be trying to apply this on their own with no help (or with the sort of anti-help we get from ill-informed health practioners). We need enough information to try to help ourselves.
Did you have any sense from this how close anyone felt to there being a drug treatment?
Very interesting about men, young women and older women being different subsets. I was a young woman when I got sick (25) and I’m an older one now (over 50). I guess I’ve moved from one subset to another. I’d be curious to know what the differences are.
Sasha, me, also.. Got CFS when I was 26, now 61.. I will be watching this one… Having this “thing” for so long, I feel it has created many health problems for me.If it had been stopped within two years or so, I believe many of the things I suffer from, and continue to get, would have never had happened.
Thanks, Cort, so very much.. Always on top of it all and passing it on to all of us out here.
I think of the frequent break idea as done during exercise; that is doing a small amount of exercise…then resting for the same period or longer – that’s what Dan did…
Then taking rest breaks as needed throughout the day..
Staci Stevens worked with Dr. Peterson for quite awhile; I think she got many of the Pacific Fatigue Lab’s patients for their studies from him. He also does aerobic testing in his office…he’s got a long history with that.
I think the 90 bpm rule is probably flexible depending on who you are but as I remember, 100 bpm is probably about the limit…
If that is the case that I will never ever be able to get out of bed. When I try to get up my bpm is already 120, shuffling to the bathroom will make it go up to 160.
I got a new fancy continuous heart rate monitor, was a Kickstarter project and is just released. It gives me a lot of information, but 90 bpm is not realistic. or maybe it is and should I just stay put.
I’m in the same boat, Christine. So far staying put seems to be working, but slowly. Maybe I’m one of those people who should be trying saline according to her recommendations. Now if I could just persuade someone to give me some…
Some of the differences are in the endocrine-immune interactions. Menopause changes that interaction; Broderick says there’s almost no information on how that interaction changes after menopause in the literature but he’s finding very large effects.
And yes, duration matters as well; the longer you have this disease the more things change in your body…so a young woman with ME/CFS looks different from an older one…so as you age you the menopausal shifts and the duration effects.
Speaking as one now thundering towards the menopause (!) I’m curious about what this means. What is different? Does it have implications for treatment or anything else?
Thundering towards menopause! I like it!
According to Broderick, yes, he thinks it will have implications for treatment.They were able to produce a diagnostic test based on 5 cytokines I think and if I remember correctly he didn’t think the diagnostic test would change but that the proportions of the cytokines would; so your levels of these five cytokines would be different relative to someone who just got the disorder. It sounded like the difference was a matter of degree…
A lot of women, myself included are going in to early menopause, I know this from a casual survey we once did among a group of ME patients.
I went into menopause at the age of 36. At that time no one asked specific questions about it. Drs. just said it was a result of my ME where all hormones are out of whack and I accepted that.
Low hormones of every kind. I too would have gone into menopause extra early but started adding more in to try to stay in the realm of normal. I had hoped that having low hormone levels corrected as well as finally getting help for insomnia would pull me clear of this, but it never changed the basic pattern of ME/CFS.
I got ME/CFS age 28.(officially. I quietly believe my mother had it and that I have had it all my life, another subset) I approached menopause age 54, had lots of problems, then hysterectomy. So early menopause not necessarily due to CFS etc. HRT essential for me, bit of a worry. 57 now. I am going to take it lying down. Re exercise – never could get fit, tried really hard for years. Even stretching is difficult, very little and seldom is my rule.
Cort,
Has Dr Peterson indicated whether he thinks that the anaerobic threshold is important in the same way that Dr Klimas believes it to be – that those with ME/CFS should seek to stay below it; and that it is a threshold beyond which symptom escalation occurs?
I wonder if that’s why some of us have so much of a harder time recovering. Our body responds to some problem, side effects of that include reduced blood volume and bizarre response to exercise and other forms of stress, but for some of us things get so low that just existing counts as “exercise” and keeps us in a perpetual cycle of problems.
I wonder that too. I can see how Klimas’s ‘exercise’ therapy may help some with aspects of m.e, dysautonomia etc. if a few minutes of low intensity exercise with breaks in between is possible but when even sitting up in bed takes you over your AT one would need the endurance of a saint to stay within one’s limits. I remember reading of one woman who was bedridden and following a strict 20 min activity/20 minute complete rest schedule for 18 months and did manage to improve to a moderate level of the illness where I believe she is still at a few years on
Exercise malaise has gotten worse with age. However, for the last year have done moderate to intense water aerobics with little or no side effects?
Cort,
I tried to follow your tweets. Out of curiosity was Ampligen even mentioned. Or was this not the forum
to discuss…thanks
Will menopause make the illness worse for many women? Please no, already predominantly bedridden!
Further to my question above, my symptoms have such a marked further deterioration in the second half of my monthly cycle that I am really worried how menopausal changes will effect my m.e. am in my forties now so menopause is looming nearer. I hope I am not galloping towards quite yet, good phrase Sasha!
Annie, my GP put me on birth control pills to stop my menstrual cycles because I was getting so sick during them. It helped me tremendously. You should consider that — she came up with the idea.
Did I read somewhere (possibly here, my brain’s gone) that Dr Klimas is publishing a paper on this exercise stuff?
Great article Cort – it’s so encouraging to see those in the know pooling and sharing research findings.