This was Dr. Montoya’s chance to highlight the ME/CFS work being done at Stanford and it was impressive. Most of the researchers presenting today are brand spanking new to the field and they are producing results and they are excited. The research being done at Stanford, one of the top medical schools in the country, brings a rigor to the field that’s sometimes been missing in the past.
It hasn’t been easy for Dr. Montoya – one researcher told Montoya was told by several of his peers that focusing on Chronic Fatigue Syndrome would ruin his career, but he’s courageously moved forward and with several potential legitimate breakthroughs being presented at this meeting, it appears to be working.
Dr. Unger (CDC)
Dr. Unger’s presentation gave us nothing new, but the facts she presented about the epidemiology of Chronic Fatigue Syndrome were nonetheless impactful and bear repeating.
#meCFS #CFS Stanford – room is packed to overflowing, standing room only – we have to move to another room, several 100 people present
#meCFS #CFS Stanford – Unger shows fatigue, sleep even pain worse in ME/CFS than in chronic pelvic pain, spinal cord injury, muscular dystrophy
#meCFS #CFS Stanford – Unger shows yearly dollar losses due to ME/CFS range from 18 billion to 51 billion – incredible!
#meCFS #CFS Stanford – when a young person gets ME/CFS their chance of graduating from colleges drops in half
#meCFS #CFS Stanford – Unger adamant ME/CFS – very heterogeneous; all study results confounded by the presence of the different illnesses (Unger is not a big fan of a new definition, neither is Mark Zinn – Unger thinks we should subgroup first, Zinn states you would have to throw away so much evidence from past studies if you switched to new definition. He was quite taken by the MRI studies already done in ME/CFS…
#meCFS #CFS Stanford – heterogeneity makes it much more difficult to study this illness
#meCFS #CFS Stanford – says increased prevalence (1-4 million) from Empirical Definition mostly due not to definition but to study parameters (and we always thought it was due to a lax definition….)
Jarred Younger – Leptin, Leptin, Leptin
We’ve hardly heard of leptin, but after Dr. Younger is through we might become very familiar with it. A younger researcher, Dr. Younger’s (::) dynamic and enthusiastic presentation was a highlight of the conference.
Dr. Klimas was very excited by his work. Lot’s of things appear to be coming together for leptin and ME/CFS.
#meCFS #CFS Stanford – Younger’s good day/bad study examines no less than 75 immune factors (!) and finds leptin is the only one that is correlated with fatigue (!)
#meCFS #CFS Stanford – high fatigue = high leptin and vice versa in 6/10 CFS patients, he’s now waiting on news re: a 200 person NIH grant to study Leptin further in ME/CFS
#meCFS #CFS Stanford – Then a startling network analysis shows that leptin affects maybe 25-30 immune factors in ME/CFS. Could leptin be the key? (He also found it in FM. I asked Dr. Fletcher if she’d ever found it in her studies; she said she never looked :))
#meCFS #CFS Stanford – Leptin is a pro-inflammatory agent that reduces the threshold for the microglia in the brain to firep; i.e., they become more sensitive to negative events in the body … ( Younger believes the microglia cause central sensitization in the brain.)
#meCFS #CFS Stanford – … until they can fire with the smallest stressor such as exercise or any time something bad is happening in the body
#meCFS #CFS Stanford – if you pretreat microglia with leptin and then add a pathogen – the microglia go bananas
#meCFS #CFS Stanford – add leptin to microglia and then add a pathogen = huge increases of very powerful pro-inflammatory agent, TNF-a
#meCFS #CFS Stanford – what increases leptin? aging, chronic stress, toxins, immune activation (and VanElzakker says the microglia itself)
#meCFS #CFS Stanford – If microglia and leptin play a key role then lots of treatment options are available (very encouraging)
#meCFS #CFS Stanford – unfortunately none of them have been studied :)). Nonetheless – they include low dose naltrexone
#meCFS #CFS Stanford – Younger – Idibulast another microglial inhibitor that VanElzakker has high hopes for, which is undergoing trials for pain in the US.
#CFS #ME/CFS Stanford – Younger – other microglial inhibitors – dextrometorphan, Rifampin, Propertyline (???) and more
#CFS #ME/CFS Stanford – Younger – other microglial inhibitors – Chinese herbs – luteolin, panax ginsenng, resveratol. piperinne, many more – lots of possibilities
Komaroff and VanElzakker
- #CFS #ME/CFS Stanford – Komaroff says he was convinced early that inflammation in the brain was key, is sending patients to VE for testing
- #CFS #ME/CFS Stanford – Komaroff was convinced of vagus nerve theory by evidence showing vagus nerve infection can spark CNS inflammation in animals
Ron Davis and the IOM
Ron Davis, one of the top geneticists in the country, is on the IOM definition panel and works with Dr. Montoya and Dr. Kogelnik. His son, Whitney, is very, very ill with ME/CFS. He and his wife both believe people with Chronic Fatigue Syndrome have been done a great wrong by the scientific community.
Davis is telling the Stanford brass that ME/CFS must be studied. It’s notable, though, that even the top echelon of researchers in the medical field such as Ron Davis and Ian Lipkin receive push-back when they talk about ME/CFS.
Things are changing, though, as the Stanford Symposium and it’s new slate of ME/CFS researchers indicate. ME/CFS is making inroads and who knows what the next couple of years will bring…
- #CFS #ME/CFS Stanford – Davis is highly lauded geneticist, runs huge lab; believes IOM panel will finally give ME/CFS legitimacy
- #CFS #ME/CFS Stanford – Davis is talking to everyone he can at Stanford -saying ME/CFS is last the big disease to make your name in!
- #CFS #ME/CFS Stanford – Davis hopes IOM will give ME/CFS access to top researchers, says panel is working hard, reviewing 1,000’s studies.
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 – Mark 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.
MRI Findings in ME/CFS – Michael Zeineh, MD, PhD
#CFS #ME/CFS Stanford -Zeinich finds significantly less white matter bilaterally in ME/’CFS vs controls (n=29)
#CFS #ME/CFS Stanford – reduced volume of thalamus found, basal ganglia not different but basal ganglia ends up being correlated with fatigue on MFI.
#CFS #ME/CFS Stanford – once again with basal ganglia we see a seemingly normal result that is possibly not normal
#CFS #ME/CFS Stanford -also finds five locations where cortex thickness is increased in ME/CFS; usually thickness is decreased in disease
#CFS #ME/CFS Stanford – Finds stronger connection in one brain pathway – Right Acturate – plus at both ends of the pathway finds …..
#CFS #ME/CFS Stanford – increased thickness at points at both ends of the pathway – rather unusual finding…Van Elzakker suggests increased thickness in one area of the brain is a compensatory response for the damage in the other side of the brain.
#CFS #ME/CFS Stanford – The fact that the MFI score correlates with the Right Acturate findings suggests it is contributing to fatigue
#CFS #ME/CFS Stanford – researcher notes they weren’t able to access limbic/deep brain regions, VanElzakker says come to Mass General and we’ll do it there. Montoya says give me your number 🙂
#CFS #ME/CFS Stanford – did not find differences in blood perfusion; i.e, blood flows through the brain
#CFS #ME/CFS Stanford – notes that twin study in ME/CFS did also not find differences in perfusion either
#CFS #ME/CFS Stanford – Byron Hyde stands up and says this is the most amazing presentation of MRI findings he’s ever seen…(!)
Quantitative EEG Studies Suggest Subcortical Pathology in ME/CFS – Marcie Zinn, PhD, Mark Zinn, MM
“CFS is going to teach us a lot about the brain”
One of the highlights of the conference, one had the feeling this could end up being a seminal paper in ME/CFS. The researcher is jazzed. He believes it explains a lot about ME/CFS and that it should hearten patients. One note – delta waves should only appear during sleep, but hey’re showing up in spades in ME/CFS patients while they’re awake.
#CFS #ME/CFS Stanford – can we detect brain-fog with EEG? And find a biomarker for ME/CFS
#CFS #ME/CFS Stanford – Measured peak alpha frequency; height of the peak of electrical signals. Peak alpha frequency is associated with cognition
#CFS #ME/CFS Stanford – finds 5/7 places in frontal lobe, 3 sites in sensory lobes and three others with reduced peak alpha frequency in ME/CFS
#CFS #ME/CFS Stanford – ‘that’s a lot of brain area!” that’s most of the cortex…these areas are mostly controlled by the thalamus
#CFS #ME/CFS Stanford – reduced peak alpha frequency hugely predicted amount of fatigue result..P<.000, a very strong result!
#CFS #ME/CFS Stanford – that means interruptions in goal directed behavior (boy, is that right on), and problems with alertness, attention …
#CFS #ME/CFS Stanford – and memory performance. “Patients are having trouble organizing and conducting behavior’..
“That’s a lot of brain area!” (Zinn)
#CFS #ME/CFS Stanford – then they went further. Used Electromagnetic tomography to try to understand brain-fog. Found that compared to controls
#CFS #ME/CFS Stanford – CFS patients had widespread delta sources mainly in the frontal and limbic areas…prefrontal-limbic connection
#CFS #ME/CFS Stanford – orbitofrontal gyrus is particularly important as well as insula, anterior cingulate, other parts of frontal gyrus
#CFS #ME/CFS Stanford – also destabilization in ‘ascending arousal mechanism’; highlight problems in the brainstem that ascend in brain
#CFS #ME/CFS Stanford – delta wave increases appear to block faster brain rhythms thus causing problems in speaking, word finding, etc.
#CFS #ME/CFS Stanford – abnormal delta results in disruptions in information transfer across the brain, cannot process information well
#CFS #ME/CFS Stanford – grey/white lesion, brainstem lesions, cerebral inflammatory and metabolic disorders found in this type of problem
#CFS #ME/CFS Stanford – also finds decreased beta brain waves in part of brain that effects motor deficits, slower motor performance, muscle weakness
#CFS #ME/CFS Stanford – problems with somatosensory cortex could result in more pain, problems with stimuli (bingo!)
#CFS #ME/CFS Stanford – suggests ME/CFS is synonymous with ‘limbic encephalitis’ (these were all in patients without psychiatric co-morbidity :))
#CFS #ME/CFS Stanford – ‘a global expression of CNS hypoactivaton was found in CFS”
#CFS #ME/CFS Stanford – Zinn says he can go into a severely ill ME/CFS patients bedroom and capture her/his EEG
#CFS #ME/CFS Stanford – Zinn says study will provide much relief to ME/CFS patients. I bet it will be a landmark study 🙂
Circulating Cytokines in ME/CFS PatientsReveal a Novel Inflammatory and Autoimmune Profile” Jose G. Montoya, MD
“The Perfect Storm”
#CFS #ME/CFS Stanford – Montoya Cytokine study – big study 180 patients! very robust – says hard to find data of this sample size anywhere
#CFS #ME/CFS Stanford – Montoya Cytokines – Females across groups had higher levels leptin, ENA78, IL1RA, resistin…Leptin again!
#CFS #ME/CFS Stanford – Cytokines – CD40, resistin, IL-1a, Leptin, Rantes, CD40 active in B-cell activation
#CFS #ME/CFS Stanford – then filtered patients – low moderate severe CFS= and results were ‘staggering’
#CFS #ME/CFS Stanford – then find 15 cytokines significantly increased in severely ill vs controls; 13/15 got worse as fatigue increased
#CFS #ME/CFS Stanford – cytokines – in mild CFS cytokines are below healthy controls/just the opposite for severe patient
#CFS #ME/CFS believes in mild CFS cytokines are going into tissues to find pathogens,in severe CFS – tissues are so damaged they start spilling cytokines into blood
#CFS #ME/CFS Stanford – TGF-B is antiinflammatory, low levels in ME/CFS suggest immune system failing to haul in pro-inflammatory state=more pain, etc
#CFS#ME/CFS Stanford – Montoya calls increased pro-inflammatory cytokines, reduced anti-inflammatory cytokines over time “the Perfect Storm”
Lipkin shows how wide-ranging his studies can be. Several big ME/CFS studies are on the way and even Ian Lipkin, virus hunter extraordinaire gets his ME/CFS grant applications slammed.
“I am open to everything other than the idea that Chronic Fatigue Syndrome is psychosomatic”
#CFS #ME/CFS Stanford – Lipkin – Believes IL-17 may be very important in MECFS (IL-17 is associated with autoimmune disorders)
#CFS #ME/CFS Stanford – notes that toxins could be as important as infectious agents in disease
#CFS #ME/CFS Stanford – Lipkin nobody can find infectious agents in Kawaski disease. paper notes shift in wind currents in troposphere
#CFS #ME/CFS Stanford – prior to people coming down with Kawaska disease, so he sent up a plane and collected air samples – found lots of candida!
Will Lipkin Crack Chronic Lyme Disease”?
#MECFS #CFS – LIpkin will look at Chronic Lyme disease patients to see if they are infected with other tick-borne disease
#CFS #MECFS – earlier study of ticks found in Northeast found many more infections in ticks other than borrelia (!)
#CFS #MECFS #Lyme – Lipkin – will Lipkin crack chronic Lyme disease? Other studies suggested antibiotics work to suppress Borellia but some people are still sick. Do they have a different infection?
#CFS #MECFS -CFI study – 486 samples! (plasm, though…) only found a few HHV-6…found retroviral reads in 85% of samples – but is not interested in retroviruses – not going down that hole again.
#CFS #MECFS – finds anelloviruses in 75%samples, but similar percentage in cases and controls
#CFS #MECFS 211 PBMC -HHV-6 – 13% in CFS samples, 11% in controls; no go with HHV-6
#CFS #MECFS – Lipkin – higher IL-17 in people with disease for less than 3 years, Ditto with IFN-7, Reduced eotaxin…calls these ‘dramatic differences‘ in immune functioning
#CFS #ME/CFS Stanford – very open to everything except that ME/CFS is not a psychosomatic disorder
#CFS #ME/CFS Stanford – Autism – GI complaints have excellent predictive value for autism. Lipkin finds reduced bacteria that break down carbs
#CFS #ME/CFS Stanford – this is the kind of systematic approach I think needs to be done in ME/CFS
Big ME/CFS Studies On the Way
#CFS #MECFS – CFI looking for things made in the gut that make it into the blood – metabolomics- will be done in ME/CFS in next three months
#CFS #MECFS – also doing proteomics in place, doing RNA sequencing – all on ME/CFS – lots of work. says ‘all the tools are in place’
#CFS #MECFS – Lipkin-most studies will be done in the next 3 months; that’s three major studies due, plus the cytokine study; lots of work
#CFS #MECFS – Question – why the gut? why not the other tissues? does not think it’s feasible to do tissue biopsies
#CFS #MECFS – Lipkin got fecal samples, would like to do throat samples, PBMC’s – reviews of his grant proposal to do gut work on ME/CFS were horrendous
#CFS #MECFS – though, very difficult to get funding, one reviewer of his grant proposal referred to ‘psychogenic illness’ in ME/CFS
#CFS #MECFS – Montoya ending up – says we need a ‘sense of urgency’ and ends a great Symposium 🙂 Congratulations to Dr. Montoya 🙂
Thank you so much for your work!
How exciting! Thank you, Cort, for being there and for such a good job reporting back. Now all we need are some spelling corrections so we can google all those technical words 🙂
I am thrilled, but now feel impatient too. Even before all the information and research comes in, the redefinition, etc., I wonder what steps we can take for ourselves?
I just went over the tweets – I did it when I was exhausted – so many errors! It’s better now.
Thanks Cort – really interesting stuff. Funny remark by VanElzakker. 🙂 Hope your brain holds up to this bombardment of info!
me too 🙂
Thanks for all the great info, sure hope something concrete comes of it! Really got a good laugh though when you said Montoya asked for the guy’s number, he’s notorious for not returning emails, phone calls etc., even from whom you’d call noted ME/CFS researchers. Heck working with him for 7 years I bet he’s only physically at Stanford about 6 months a year, the “clinic” is 1/2 day a week.
Great to see more people at Stanford involved!
Wow! Speechless and need to read over and over. Thank you Cort and wonderful work from all the researchers.
Wow! I’m exhausted just reading this. Its really exciting. Thank you so much.
Thanks so much for doing this! Exciting times. Take care of yourself Cort!
I hate Twitter. All tease and no detail.
Looking forward to more substantial write-ups!
Cort, Thank you so much… such great and overwhelming information for you to write about and explain in the future to us sickies… take care my friend, francesca
Another huge Thank You to you, Cort! You are amazing!!!!
I liked Lipkin’s statement: ““I am open to everything other than the idea that Chronic Fatigue Syndrome is psychosomatic.”
He has a way with words 🙂 He actually said he funded one trial – on something to do with RNA that is not finished up – himself. He was at the conference throughout today, which surprised me. I thought he would probably talk and then go.
Thank you, this is very valuable info.
Is it possible for patients to donate money for any of these researches?
Lipkin is trying to raise $1 million for a gut micro biome study for me/cfs at Columbia. It is ready to go,just needs the funds. See Simon McGraths’s 2/10/14 article on Phoenix Rising. There’s a Kickstarter campaign in the works to help him.
Thank you, thank you, thank you!!!
Very interesting to hear Ron Davis interpretation of the IOM situation. He seems to see it as the dawning of a new and better day for ME/CFS.
Cort, I don’t know how you keep up, but thank you so much for sharing with us.
Awesome to hear these things. THANK YOU Cort for what must have been an absolutely exhausting day sending out these findings 🙂 So happy to hear all this 😀
Yes! Ron Davis has started the Chronic Fatigue Syndrome Research Center at Stanford and we are gearing up fundraising for the myriad of studies he would like to do in collaboration with Kogelnik, Montoya and others! We’d love to get lots of donations! You can go to cfsresearchcenter.org and there’s a donation button. Donations go directly into a totally separate fund for this research. It’s tax deductible because it’s part of Stanford.
That’s so cool. Ron Davis may be the most decorated researcher ever to work on ME/CFS. Getting a major University interested in ME/CFS is the key. At Stanford they’re all VERY rigorous and all very talented. If we can get Ron the money he will bring in the best and the brightest…
This Symposium is just the beginning 🙂
I recently sent a short email to Jeff Bezos (Amazon CEO) asking him to support the research for ME/CFS at Stanford chaired by Dr Montoya. I thanked him, and Amazon, for making my life easier through organic foods and delivery of items that I would have difficulty acquiring otherwise. Then I asked his support.
Ditto to all the above!
Im trying to find the articles I sent you on Leptin. There were two. One on the connection to lyme and leptin and I think the other was on CFS and leptin. If you still have them, would you post them? Thanks. I’ll keep looking. I know I saved them.
There’s a thing called leptin resistance. Similar to insulin resistance. Where you have enough circulating but don’t uptake properly. I found a product that helps this. The one I use is by Life Extension. Called Intregra Lean Irvingia.
here is a study on leptin
Thanks, very interesting. Shows connections to immune response (autoimmune) and inflammation. We keep getting that as a conclusion. Work on those two things and maybe that will be the key. (Seems to be working for me.)
I found the one on Lyme and Leptin. There is also a connection between fats and leptin.
Interestingly, Dr. FRY has for years been saying and also discovered another protozoa that can not only be gotten from ticks, but also mosquitoes. He is treating me for this. Its making a huge difference. Of course the protocol also addresses the immune system and inflammation. So you have just about all the angles covered.
Simmaron has the blood samples to do a mosquito and other insect infection study. I don’t think they have the funds yet though.
Maybe they should talk to Dr. FRY. He has already done it and continues to research. What he has me doing is making me so much closer to “well” than I’ve ever been with anything else I’ve tried over my lifetime.
wow, I am moved to tears that there is more possibility on the horizon than ever. AND I must feel my seat on this chair and breathe and know that it will take time for it all to integrate and become available. will i sleep tonight, who cares?
thank you Cort for all you do. You must be pooped, but it is worth it. you are doing a great service.
The two most important presentations for me were the Younger – leptin and the delta brain wave pattern study. The Younger study was small but leptin ties in with a lot of stuff including the microglia, and a similar problem is found in FM. They looked at 75 immune factors and Leptin just popped out, and them seemed to regulate many immune factors in ME/CFS. We obviously need a much better study, but it’s quite enticing and Dr. Klimas loved it.
Those delta brain waves had a huge correlation with fatigue and the study was pretty darn big; I think it was 50 patients. It could explain a lot.
I read that Leptin is also responsible for “feeling hungry”.
Would it be strange to conclude that “not feeling hungry” is related to possible high leptin in the system?
And that after 12 yrs of not feeling hungry anymore, when that changes all of a sudden and you get your appetite back, something good is happening in my body?
If this would be true, then this “good” thing in my case would be: aciclovir+imunovir+antibiotics.
How could these things be tied together?
Seems to me Van Elzaker is a step closer to unraveling this mechanism than Younger?
We’ll see whose. Van Elzakker is at the conference and he is very impressive. A younger guy, like Younger :), he is everywhere – asking many questions, pointing out different possibilities. He seems very up on ME/CFS research in general. It’s great to see him engaging so much with the other researchers.
One way research has shown this is tied together would be due to elevated levels of prolactin. Prolactin stimulates B cells where the EBV lies dormant. It also increases leptin as the link to the study shows. http://www.ncbi.nlm.nih.gov/pubmed/10865230
The stimulation of B cells by prolactin would explain the reactivation of the EBV and also the depleted immune response to the virus. I made a post on this recently on my Facebook page (Autoimmune The Cause and The Cure).
Prolactin is elevated in fibro and ME/CFS due to a lack of dopamine. Dopamine restrains prolactin. Research has confirmed the lack of dopamine and elevated levels of prolactin in fibro and CFS and has also confirmed patients with fibro and CFS lack the essential amino acid that dopamine is derived from-phenylalanine.
So interesting Annesse. I’m heading to your page to read more…..
I have always thought that prolactin might have some bearing. My muscles often feel how they did in my late pregnancy – loose and weak. hmmmm. Heading over there to your page.
Thank you Cort for your effort expended on our behalf.
My ME/Fibromyalgia pain & fatigue have recently increased to an overwhelming level. Reading your report has given me hope that I will survive to see a cure for this wipe-out illness and the satisfaction of hearing an apology from all those medical professionals who dismissed me.
I wonder if the difficulty of obtaining funding for research may be deliberately caused by a growing fear of multiple compensation claims by those of us who have been shunted aside by the medical profession, dismissed and abandoned to suffer alone.
Hang in there, Jan -there’s some very new stuff coming out from Stanford that could impact treatment and the understanding of this disorder. Every study we get from Stanford will also raise the legitimacy of ME/CFS; you can’t get something from Stanford published that isn’t really good – they have the reputation of the school to uphold 🙂
Also, Stanford like other major universities has its own grant writing overview – these people put in good grant proposals! We should hear soon if Younger got his big grant application for ME/CFS accepted. 🙂
I needed encouragement. This was encouraging. I love when our experience of this illness is validated.
And the difference found between mild and severe was interesting; I have thought for a long time that the illness can swing from a hyper to a hypo state as a person becomes more ill and where the body is finally poisoning itself. That was my experience and somewhere in the shift, I felt like I was getting better for a while only to slide very quickly into a severe state of health.
Thanks cort for your update. I am very happy to see Stanford doing so much research. But i still don’t see any breakthrough or exiting news at this moment. It is still the same story i hear for 10 -20 years now, especially NK cel function, cytokines and infections etc… nothing came up from these findings last decade. It looks to me if the researchers running in circles and don’t know it anymore. ME is not a single disease with one cause like Nancy said. But i am optimistic about the new researchers who gets involved.
I sympathize with what you are saying. While it seems there is more activity, more possibility, the answers that will actually help the patient seem no nearer. I feel a bit let down that there were no presentations concerning the endocrine system and its role in regulating the immune system, the cytokines and the oxidative stress that is causing the damage.
Nothing on that yet. The CDC is including salivary cortisol in their multi-center study, but the endocrine system is not getting the attention it once did. I’m sure it would if we had more researchers involved. One strong research group can make such a difference and we don’t have even one focusing on the endocrine system unfortunately.
Hi Gijs and John,
Please don’t despair -the answers are getting closer – quoting Cort’s tweets
If microglia and leptin play a key role then lots of treatment options are available (very encouraging) unfortunately none of them have been studied :)). Nonetheless – they include low dose naltrexone. Younger – Idibulast another microglial inhibitor – VanElzakker has high hopes for it, undergoing trials for pain. Younger – other microglial inhibitors – dextrometorphan, Rifampin, Propertyline (???) and more. Younger – other microglial inhibitors – Chinese herbs – luteolin, panax ginsenng, resveratol. piperinne, many more
Some of these drugs will be fairly easy to study.
I have been on low dose naltrexone for 3 years – it has changed my life from being wheelchair dependent going outside to a nearly normal life.
The doctor who prescribes it for me says it works in about 80% of his patients but he hasn’t found it work in people who are severely ill – if they are finding differences between severe and mild ME that would fit in.
We need clinical trials in low dose naltrexone, to see just how effective it is. Thankfully Younger has done a small study in fibromyalgia which showed some benefits, so I’m hoping he will want to do one in ME/CFS.
Younger is waiting on news of a big NIH grant to do the LDN trial in ME/CFS…..
Sadly, I couldn’t use LDN. It caused really bad depression with me. It did help my pain levels and sleep. But the emotional mess it caused was not worth it.
That is fantastic news! If Dr Younger gets the finances for that trial it might be a game changer for everyone, even those who don’t respond to LDN as:- a) I believe enough people do respond to LDN to show once and for all that this is a physical illness b) LDN would be freely available for those who do respond and c) the drug companies would realise this is a disease worth putting money into.
a medication you mentioned above, Idibulast, is made of the same stuff that Vinpocetine is made of. vinpocetin is a natural over the counter supplement (found everywhere, including amazon.com and vitacost.com, my two go-to places for supps). i have been wanting to try it for a long time. i’ll get some now.
wait a minute. i think i misinformed you all with my above post. instead i should have said that the reason i’d consider taking Vinpocetine (to try to get some of the same effects as the Idibulast), because both are phosphodiesterase inhibitors.
Thank You, Cort! Such encouraging news. Just knowing the experts are gathered together and comparing notes — this can only be good for us! I think you might be developing a new way for a sick patient to take notes. Just tweet, tweet, tweet and fill in the details later — thank you for being such a trailblazer!
Thanks. Unfortunately no tweets from the Conference – no internet connection except through smart phones and I don’t have one.
Just extraordinary, so excited for them lets hope the momentum keeps going.
Thanks for all the info. and your hard work! Hope you get a good rest afterwards.
I needed some encouraging news and this helped.
Good to see Younger’s work on leptin…I have been harping on about microglia for a long time:)
Good to see Younger’s work on leptin…I have been harping on about microglia for a long time
Thanks so much, Cort! – so much promising research FINALLY being done! One thing not new to me were the findings about delta waves since many showed up in my QEEG done by Dr. Myra Preston many years ago. This was part of her report and I was astonished that she knew about my balance difficulties and other symptoms without ever speaking with me.:
“There is diffuse and severe abnormal slow wave activity recorded from all delta regions. Theta activity is recorded from the frontal regions extending all the way through the sensory motor cortex into the left visual cortex as well as the parietal lobe. Beta activity is hypercoherent in the left frontal region known as FP1 and in the left temporal and parietal lobes. Because kinesthetic and vestibular functions are mediated by areas low on the parietal lobe near the occipital and temporal lobe boundary regions this patient would be experiencing significant deficits in her ability to be aware of the position of her body in space. This would result in balance difficulties involving the left hemisphere and resulting in a tendency to experience right sided confusion. Cognitively this patient would be experiencing short term memory deficits due to the high theta activity as well as attention and concentration decline.”
I was very much awake, or as awake as possible after 3 days of testing with Dr. Lapp. The test was performed under these conditions:
“(1). Resting with eyes open (2). Resting with eyes closed (3). Eyes fixed (4). Subject reading (5). Subject listening (6). Digits forward and backward memory testing (7). Bender/Gestalt testing.”
The gut research is very interesting to me too, as many symptoms are much worse when my G.I. tract is sluggish, to say it nicely. I wonder why people with M.E./CFS are more prone to leaky gut, which I most certainly have. I’ve gone on too long! Thanks again!
Isn’t that something….Zinn says some research had been done on delta waves in ME/CFS prior but no ones really picked up on it..One wonders how many important finding in past studies just never got validated.
Yes, makes you wonder, Cort. It was interesting but I found myself wishing that was not MY brain she was describing. 😉
Nan, how can I reach you to ask you a question about your work with Dr. Myra Preston?
I’m on Facebook (Nan Talbot). If there’s more than one Nan Talbot, my photo is with my husband and there are lots of roses in the header photo.
Boundless thanks to you and to all of the presenters at the symposium!
As always – I can’t thank you enough for your unrelenting reporting from this power packed
Conference. The research is awesome and amazing to have all our experts at STANFORD.
No doubt lots of research all the years of CFS/ME past was never published/validated, but some patients improved with the findings.
We are all there with you as you tweet away
Please try to rest..rest..and hydrate when you can.
Thank you Cort for passing on this information. One of the many things that grabbed my attention when reading your article was the mention of prolactin. This intrigues me as looking back on past symptoms I can see I had a lot of CFS/ME symptoms in and after each pregnancy (but of course everyone tells you “it’s normal to be tired when you have a baby”.) Yes, but most people manage to function at least a tad!
I’d had a reasonably decent case of glandular fever when I was about 20 and I’m wondering if pregnancy triggered some sort of relapse perhaps. The same thing happened with all 3 pregnancies.
I am dumbfounded by the degree of CFS/ME expertise some doctors seem to have in the States. I am struggling to find specialists in Australia who have the knowledge and experience of the doctors described in your blog. The general attitude here seems to so much be one of either ignorance or apathy.
Have you checked out Dr. John Whiting. He’s all over the conference – he seems VERY knowledgeable and he has ME/CFS. I don’t know which part of the country he’s in, though.
Thanks for posting all this, Cort! I saw you at the conference, but was too pooped to converse. I am delilghted that you are sticking around for the whole thing. Thanks for reporting back to us! It was pretty cool to be there among physicians and researchers who CARE about this disease.
Cort, I think it was Richie Shoemaker in his study on mold exposure that talked a lot about leptin. Does anyone remember that? Also cholestyramine. I remembered the word from his work…..interesting. Thank you for the update.
Yes, Valerie, I remember that. I sure hope the leptin researchers at Stanford are familiar with Dr. Shoemaker’s work!
yes, i did all the shoemaker testing with my local doc (in boston) and one of them was for Leptin. it was in the normal range.
A friend with Lupus told me about how dietary lectins, largely from grains, cause problems with leptin. There is quite a lot of information about this on the web if you google lectin and leptin.
About Delta waves while awake, my neurofeedback therapist in the 1990’s would find this in my EEGs. She was astonished. I hypothesized that they represented the “potholes” I was experiencing in waking consciousness. For example I would very often miss exits and turns while driving and have absolutely no recall. Then I would just turn around and drive straight back until I got somewhere I recognized. I would never turn off the road while in one of these functional blackouts. All the times of “drawing a blank” have been similar lapses. And I certainly have a slow mind.
I am very exited by the Zinns’ research and know they are on a very productive track for us (finally)!!
Thank you so much Cort! I’ll not experience much more help in what’s left of my lifetime, but I have always said that if it weren’t so tragic a disorder, it would be absolutely fascinating. If only there weren’t more scientists working together. I want to be hopeful for my grandchildren. My 2 sons have some of the symptoms but neither as sick as I have been.
Perhaps there might be help for them and definitely for my grandchildren, greatgrandchildren, etc. At least there will be respect and not be treated inhumanely like we have been by some.
Ron Davis – uber geneticist – says the research community owes us a huge apology, I get the feeling Ian Lipkin believes the same thing.. Those are two good researchers to have in our court. 🙂
Excellent stuff, Cort! 🙂
Thank you sa comprehensive review of some of the most exciting research. Feeling more optomistic that the likes of ‘sir’ Wessley and the ‘good ol’ boys of Psychiatry’ will very soon be under massive medical malpractice suits, maybe the ongoing reluctance to fund ME studies and “push” researchers away from this field which WILL greatly expand our knowledge of the human brain for all disease states will now rapidly change as this combination of exciting younger 🙂 researchers collaborations with the excellence of the old school greats of ME research such as Dr Byron Hyde, so terrific to note his keen presence at the conference…has provided much food for my exhausted and very cognitively challenged biochemistry research brain after 6 years of constant Varicella Zoster Virus (VZV) attacks resulting in severe ME/FM and host of other complications resulting in 11 admissions to hospital over the past 6 years and 3 of these in pain units… thank you again for much hope that I will soon regain some cognitive function to utilize my research into this exciting and much needed field of Neuroimmunology. All the best from Australia 🙂
Great job Cort – I can’t imagine how you do what you do. Just reading this page can put my brain in a tailspin. I haven’t seen it and may have missed it but I wondered if you were able to get any input from anyone at the symposium about the new study from Germany that showed 5 ways CFS/ME sufferers were unable to clear EBV infections? I’m still very, very interested in following that lead.
Take care of yourself !
Hi Cort! I have only just recently found “Health Rising”, though I’ve had ME/CFS & Fibro. for 22+ yrs. I love the site & THANK YOU very much! This report was so kind of you. You’re amazing doing this with “our” illness.
I am wondering if you were able to hear Lucinda Bateman’s presentation. I’m a patient of her’s so am interested in it. Perhaps there’s a link to where I might find a transcript. Do you think Stanford’s site might have it?
Again, thank you from me and all ME & Fibro sufferers!
Thank you for all your work on keeping up with the medical research and theories surrounding chronic fatigue syndrome and fibromyalgia. It was really inspiring and hopeful to read this particular one but I think its great that you are able to post a variety of things without getting overly biased or personally involved, I marvel at times how you do it, but that it what makes this such a great source and also you have a way of breaking down complex jargon so it is more accessible to the reader. Thanks again for all you do to help those suffering with me/cfs fibro,lyme etc.