The CDC is having a public call-in session on Monday, Feb 23rd. First Dr. Unger will talk and then Dr. Jose Montoya of Stanford. (See the schedule below). Everybody is invited.
It’s not a call to be missed.
Dr. Unger and the CDC
First Dr. Unger will talk on what the CDC has going on – and they have a quite bit going on.
Gynecological Study – They just published their second study (blog coming up) finding a greatly increased risk of gynecological abnormalities exists in ME/CFS. In fact, it appeared that the incidence of every single one of the ten gynecological condition they looked for was significantly increased in women who met their criteria for chronic fatigue syndrome. Some of those conditions clearly occurred well before the women got sick with chronic fatigue syndrome.
Those findings are probably not a surprise to Gordon Broderick given his results suggesting that the interactions between female hormones and the endocrine and immune systems play a key role in this disorder.
The CDC’s gynecological studies are opening new ground in ME/CFS
Multi-site Study – There’s also, of course, the ME/CFS experts study. At the San Francisco conference last year all Dr. Unger would say about the long-awaited results from the first phase of this big study was that they were working hard to “scrub the data” and they would get them out as quickly as possible. That was almost a year ago. It can’t be long now. I, for one, am waiting with bated breath for the results.
At her recent patient conference, Dr. Klimas asked the ME/CFS community to let bygones be bygones and give the CDC a break! She’s clearly impressed with what they’re doing right now.
Yes, there are still problems (Toolkit) but they’re also doing a lot right. There’s the multi-site ME/CFS experts study, the gynecological study and we recently did a blog on a NK cell study they did.
Dr. Unger has all of ten minutes to update us 🙂 then it’s onto Dr. Montoya’s talk on the
“The Stanford ME/CFS Initiative: Collaboration, Innovation and Discovery”.
What does Dr. Montoya have going on over at Stanford?
The Mega Immune Project – A 600 person study featuring Mark Davis – a top immunologist – and his monster machine to exhaustively look at immune cells in ME/CFS. This huge project will take a year – just to run the samples. Davis is using his immune toys to run dozens of studies on all sorts of diseases- and this is the biggest one….
The Zinn’s Brain Studies – the results of these two studies blew me away at the Stanford Symposium last year. The Zinn’s talked about a zombie -like brain pattern that had the brain looking like it was asleep when it was supposed to be awake, about altered brain signals across much of the front of the brain (“that’s a lot of brain” they said! ) and another finding that suggested a “limbic encephalopathy” (nice name!) was present. It all made for a very impressive and exciting presentation.
Referring to their results the Zinn’s stated: “That’s a lot of brain”
The Inflammation Disorder – a large gene expression study strongly suggested that ME/CFS looked very much like “systemic inflammatory syndrome”. It also looked like some other inflammatory disorders. It basically looked like an inflammatory disorder. That’s good news for everyone involved in immunological research.
Then there was the Zeineh brain imaging study that made such a splash last year and a cytokine study and probably some others. (Who knows? There’s a lot going on at Stanford!)
Dr. Montoya recently said they’re already seeing getting some good results on the immune front. My guess is that he’s talking about Mark Davis study. If so that’s exciting news indeed.
Dr. Montoya has all of 30 minutes to spill the beans on what’s happening over in Stanford. Then it’s onto a Q&A period.
It’s all happening on the “CDC CFS Patient-centered outreach and communication activity (PCOCA) Conference Call”. (We won’t be asking their recommendation for a name…)
- Monday, February 23, 2015 : 3:00 pm – 4:00 pm EST
- Call number: 1-888-989-3481
- Participant Code: 7298996
The Agenda
Professor of Medicine
Department of Medicine, Division of Infectious Diseases and Geographic Medicine
School of Medicine Stanford University, Stanford, California
I think that’s the most impressive name yet! Inflammatory Limbic Encephalopathy (ILE). Kinda hard to make fun of someone that has that for a disease.
I would take it!
SEID or ME or ME/CFS may have a shorter lifespan than we think 🙂
One of my pain Dr’s was aware the morning after initial report was released. That pleased me VERY much! Apparently he and his cronies spoke about it together. Also, for I think the first time ever, I didn’t get a look and a comment from nurse at other Dr’s when I had to lay my head down while waiting in the exam room. This kind of feels a
Little ‘different’. Hope it’s not just wishful thinking.
Thanks for all of this Court. It’s SO appreciated. 🙂
Is the CDC or Stanford likely to record the event and make available online?
Looks very interesting event. 🙂
Is the CDC or Stanford likely to record the event and make available online?
Looks very interesting event. 🙂
l like Chronic Limbic Encephalopathy (CLE) as ILE anagrams to lie.:-)
Feels like movement in a forward direction….finally, thankfully!
It’s going to be a big year at Stanford and with the Chronic Fatigue Initiative and hopefully with the CDC and their experts study.
Can’t thank you enough for these kinds of updates, Cort. It’s great to hear of the new developments and strides forward that are being made without having to be subjected to so much of the negativity that’s been coming up recently (in re: SEID, etc.). Really appreciate it your continued efforts.
Hey, I love hearing and spreading good news 🙂 It gets me pumped up.
Someone walked into Montoya’s office, the story goes, and gave him $5 million dollars I think it was.
I hope someone walks into the Ron Davis’s office and gives him the same thing and into Dr. Klimas’s office as well.
Then I hope he or she goes over to Dr. Bateman and gives her a million dollars to start a Center of Excellence.
Then I hope they give me 20K to build the best damn outreach program we can to bring everybody in and compel the NIH to give us $50 million dollars!
Oooooh! I vote for that!
I second! All of that would be so awesome and make such a difference!
This would be a dream come true Cort! We know there are people out there with that kind of money who could make this happen in the blink of an eye.
Thank you, once again, for keeping us encouraged and updated. No one does this job better than you Cort and I continue to appreciate you more than ever.
🙂 Thanks Pat…It could happen. It could be that once people have more confidence that we’re really onto something – the money will come pouring in. 🙂
Hi Everyone. Cort do you have a printed copy of the conversation?
Devin Starlanyl posted info about a report by Cas Linnman of Harvard Neuroscience that showed the brain lighting up in red and orange in people with chronic pain. The article is from Science News I think and it is new as of 2015.
I am looking for a full copy of the article but you have to be a member of Science News to get a full copy and I am poor. We just got our latest food hamper yesterday.
I am on Devin’s facebook group and recommend it to people with FMS and Chronic Myofacial Pain.
So glad that the gyno and female hormone issues are being looked at. Of course it is along and involved story, but my ME/CFS was female hormone triggered and documented as it happened by my Doctors…so they all believed. Still took 4 years to get diagnosed. The mitochondrial connection is being explored by Chandler Marrs at Lucine…see hormonesmatter.com. Thank you for keeping us posted on it all.
I have always wanted to learn at the level of a PhD in Science. I did a BSc in Zoology then attempted a Masters in Zoology which included First Nation knowledge and GIS technology while fighting off pain with meds and neck braces in northern Manitoba on a trapline.
I have always had weird energy from birth. My Chinese doctor confirmed it. FMS Plus has changed the energy and is hard to explain. I studied mitochondria in anatomy and human growth hormone for a job interview and figured that the connections to hormones was real and the energy loss was likely real in the 80’s. Research into birds circadian rhythms lead me into studying the phenomena in people and lead to me sharing these ideas on the early science only internet and now these rhythms are being studied.
I want to do a wholistic approach to well being as a First Nation Medicine woman would do along with Howard Hughes Medical Institutes HHMI work on brain neurology. We know very little about how our brains really work because often research is conducted in silos and very few put the whole picture together. When I studied beaver habitat I looked at 30 different environmental variables which blew the minds of the lab professors who relied often on one traumatized animal at a time.
The funny thing is that I think we are like canaries in a coal mine. Our whole selves are affected by the well being of our planet; the electro magnetic properties of earth and northern lights, buzzing, Cas Linman’s study of coloured lit area in our CFS brains, biaxial movements and other things that go bump in the night.
Do you think that we could find funding and professionals to work with us in a study designed by a few of us and used to do research I can undertake in order to focus on the reality of our lives. Like most scientists I am biased. I believe in people like myself with these diseases. Can you help me Cort to accomplish one of my lifetime dreams?
As a 20 year victim of ME/CFS and FM I attended my Drs. office this past week and asked him if he had the information on the name change to SEID – no he hadn’t and when I gave him a brief bit of infor – he did not appear any more interested than he has been for the past 2 decades and said – well if “they” give me the how to treat it then I will – as far as I experience this name change will not do anything at the GP level –
The good news is that making the diagnosis easier to do is a major part of the IOM effort.
I don’t know if they have much on treatment – they were tasked with diagnosis.
Hmph. Never had any gynecological issues. Ever. And I am female. Course if I really have Lyme disease then maybe it’s irrelevant.
I do have the gyn issues. I just became positive for Lyme disease after being treated by the experts for ME/CFS. Very upsetting. I look at my lab report in shock and cry, then get angry at the wild goose chase I was unknowingly on.
I have the gyn issues too, and a 2-page symptom list. After 15 years of total disability with first “Chronic Fatigue Syndrome,” followed by a diagnosis of fibromyalgia and finally Multiple Chemical Sensitivities, I found out I have Lyme, Babesia duncani and two kinds of bartonella. Problem is, 3 years of antibiotics and anti-malarials have not made much of a dent in the symptoms. It’s really better to find out what infection is causing your illness SOONER rather than later – it is much more possible to treat it then.
Thank you Cort! I hope that exciting things are going to start happening quickly. Do you know if there will be a printed report of the CDC talk taking place on the 23rd? I know you will likely do an overview as well? My brain and a telephone no longer seem to work well together. I really appreciate how easily understandable you make things.
I am going to do an overview. I have to make sure I remember to listen in (sigh…) but I will do an overview and I imagine a podcast will be available….
Thanks for the information, the call should be very interesting. I’m not at all surprised about the gyno/hormone connection. In talking with other women regarding this, it’s become remarkably clear that many of us had major problems and like me have had radical hysterectomies at a young age, way before my contemporaries. So much is happening and we,the patient community, physicians and researchers seem to finally be on the same page. We owe so much gratitude to the advocates in each group for finally pushing the science forward. It is a commitment that takes a terrible toll and I for one can’t express enough thanks. This extends to you, Cort for providing great information on all that’s happening. It feels like we stagnated for thirty years and the last few have gone by at warp speed.I’m really looking forward to the next great discovery.
I have the increased gyn issues, meet the Canadian consensus criteria and the Fukada criteria. I have non-functional NK cells (practically considered a biomarker for CFS). I see a well known Dr at Stanford. I am quite angry. My Lyme disease test was always negative. So my Drs moved on. Turns out you have to have a functional immune system to produce antibodies…huh? This month my Lyme test became IgM positive and I have a Picc line placed for IV antibiotics next week. It’s VERY upsetting to know this spirochete was eating away at my nervous system while I was taking Valtrex (tried Valcyte, etc, etc). The CFS experts need to work with the Lyme experts and I bet there would be a cure for a lot of our misery.
The two communities are only coming together in a few doctors really. Holtorf believes Lyme is big in ME/CFS and Lerner always looks for it. I’m not sure how many others do. Lyme is another very controversial area….we seem to specialize in them.
Good luck on getting better. I would like to hear how it goes.
Angela, I 100% agree with you.
There is so much overlap with persistent tick disease and ME/CFS/SEID. Each community I think views the other with a mainstream lens, without understanding or having actually read the literature.
(that’s partly an issue of no-one-has-enough energy to understand it all!)
Still I STRONGLY wish our top ME/CFS/SEID practitioners would try to learn more about Lyme and the many common coinfections (rather than take mainline IDSA approach).
I think Dr. Horrowtiz’s book about Lyme-MSIDS ,,,or reading some primary literature on lyme testing sensitivity (lack there of) / prevalence/and persistence should be on top of ME practitioners reading list.
And on the other hand, I feel these top ILADS doctors would greatly benefit by reading for example the ICC or CCC documents about ME.
So much overlap.
Then there’s mold illness/ myotoxins…
All (three) of these inter-related diseases…create PEM/PENE, for the record…As well as poor NK cell function, markers of inflammation like C4a etc.
So yes again a collaboration of these experts seems very smart– and I think would benefit many who (like me) fit the criteria for all of these diseases.
Dr. Montoya does mention on his Stanford page… I believe looking at chronic lyme disease as part of the infectious associated chronic illness. I wonder Cort if he has done more with Lyme as well?
Thanks as always for your work!
I have done very little with Lyme.
The Simmaron Research Foundation is raising funds, though, for a study to look for evidence of infections from ticks, mosquitos and other other insects.
angela you are some very good company with your lyme diagnosis ..somehow the CDC has to acknowledge the millions of people who have been labeled mentally ill and kicked to the curb after 30 days of insufficient treatment
Limbic Encephalopathy – sounds like things are finally getting narrowed down! Does anyone remember a book entitled “Chronic Fatigue Syndrome: The Limbic Hypothesis” written in 1993 by Dr. Jay Goldstein? As you might expect, he hypothesized that a limbic encephalopathy was at the heart of CFS, and the book described this hypothesis in detail, along with the supporting evidence that was available at the time. Early in the book, Dr. Goldstein expressed the hope that someday, someone would follow up on his work…
That’s right!
Would’t it be a great idea Cort to bring Dr Goldstein ( I think he is still
living and well, although he is retired) in contact with the Zinn’s and other
researchers. Dr Goldstein has such a large experience with hundreds of patients : he treated them with a simple cost-effective Drug Treatment Protocol for FMS or CFS. He was able to help 95% of them.
see: Jay A Goldstein,MD: Betrayel by the brain. and Tuning the brain.Principles and practice of neurosomatic Medicine
or start with ; A companion volume to dr Jay A Goldstein’s Betrayel by the Brain; a guide for Patients and their Physicians by Katie Courmel.
It would be fascinating to get his thoughts on all this. I wonder if he’s kept up with the science? I wouldn’t be surprised.
A man well ahead of his time with his brain hypothesis
I think it would be great to bring Dr. Goldstein in on the current research, as I think that his input would be invaluable. But although Dr. Goldstein is still alive, unfortunately he is quite ill, and it is my impression that he is not able to travel at this point. I would expect that he is quite up do date with the science, however.
As Matthias indicated, Dr. Goldstein was definitely well ahead of his time. After I posted my original comment, I looked in “Chronic Fatigue Syndrome: The Limbic Hypothesis”, and here is what I found at the beginning of one of the first chapters, from back in 1993:
“I have come to the conclusion that most of the symptoms of CFS can be explained by postulating a limbic encephalopathy. Although the data to support this belief have an experimental grounding, it would still be a rational assertion if one just applies the contemporary concept of limbic system anatomy and physiology to explain how the symptoms complex of CFS could be generated.
“Most physicians I have spoken with have only the vaguest notion of the limbic system… A few researchers in behavioral neurology and physiological psychology may regard a discussion of the limbic system as “gratuitous” (as one of them termed it), but a leading specialist in CFS recently asked me, “What’s in the limbic system?” I expect that in the next few years, a detailed knowledge of the limbic system will be necessary to understand many presently mysterious medical disorders.”
Of course, limbic encephalopathy was the subject of only one of the two Zinn studies. The other was about “altered brain signals across much of the front of the brain” – in other words, the prefrontal cortex. In Dr. Goldstein’s next two books, Betrayal by the Brain (1996) and Tuning the Brain (2003), he expanded his limbic hypothesis to encompass the rest of the brain, with the strongest emphasis being given to the functioning of the prefrontal cortex and its role in CFS.
Yep a “CFS genius”….certainly not mainstream.
We should call CFS “Goldstein’s Disease”….
I’m all for calling CFS “Goldstein’s Disease” – the man certainly deserves the honor. (A number of his colleagues thought he deserved the Nobel Prize in medicine for his work.) But I’m afraid it’s not realistic to expect the community to go along with this; his work was not well enough known, due to no fault of his own.
Thanks so much for this information, Cort. Your input is greatly appreciated; I think these studies are extremely important and am looking forward to the results. I have had ME for 15 yrs. and would love one day to be even a little better[as would everyone]. Thanks again.
Great no more name bull….this sounds promising….inflammation, brain,immunity… We will get there soon
🙂
The research comes first!
Angela, I 100% agree with you.
There is so much overlap with persistent tick disease and ME/CFS/SEID. Each community I think views the other with a mainstream lens, without understanding or having actual read the literature.
(that’s partly an issue of no-one-has-enough energy to understand it all!)
Still I STRONGLY wish our top ME/CFS/SEID practitioners would try to learn more about Lyme and coinfections (rather than take mainline IDSA approach).
I think Dr. Horrwotiz’s book about Lyme-MSIDS ,,,or reading some primary literature on lyme testing sensitivity (lack there of) / prevalence/and persistence should be on top of ME practitioners reading list.
And on the other hand, I feel these top ILADS doctors would greatly benefit by reading for example the ICC or CCC documents about ME.
So much overlap.
Thanks Cort as always for your work!
Then there’s mold illness/ myotoxins…
All (three) of these inter-related diseases…create PEM/PENE, for the record…As well as poor NK cell function, markers of inflammation like C4a etc.
So yes again a collaboration of these experts seems very smart– and I think would benefit many who (like me) fit the criteria for all of these diseases.
Good funding would hopefully let us tease out all triggers including mold, ticks, viruses, chemicals and others.
The P2P report called for an International Conference involving disorders with similarities to ME/CFS to get people from different disciplines together and talking.
I agree w/ Dr. Broderick’s idea/findings about female hormones and endocrine/immune function. Right around puberty is when I got sick…illness probably slowly started within about 2 mos of that. Before that always had virtually unstoppable energy…very driven, precocious kid. Before I got sick at 14 I’d already done at least 3 fundraising efforts for a local homeless shelter…my idea. It was a progressive exhaustion, started getting kyphosis (Rowe’s findings), heat-sensitivity/weakness (POTS probably in retrospect though didn’t know it then), a bad flu-like bug I never fully recovered from, then a trip I pushed through just days later when thought should be well and got a sore/throat/cold w/ nausea while on trip, then crushing fatigue/out of commission on return, then fever or fever again/sore, red throat that persisted months w/ low white blood count/viremia according to my Dr, nervous system symptoms, too weak to walk to the bathroom at times, pressure in head feeling, etc etc…it all hit.
This illness is just amazing! We will have a program up soon hopefully that will allow you to present your story in all its “glory”..
The stories are just incredible….
One of my pain Dr’s was aware the a.m. after paper was initially released. They spoke about in his practice both here in Ontario Canada and with others in Michigan. For the first time ever, I didn’t get a look or a bit of a snide comment at other doc’s office when I had to lay down (or wipe out) waiting in exam room to see him.
Is it wishful thinking or does it feel a little ‘different’? I’m not letting myself get as hopeful as I was in the early XMRV days, but I AM a ‘little’ more hopeful! Thanks for Court. I too hope SEID DIES an early death. 🙂
My thanks to you Cort for keeping us informed, and for bringing all the latest info down to a level I am able to understand. You continue to give me hope…something I’d pretty much lost for decades! God bless you for all your hard work!
Glad to hear it Nancy – stay tuned! 🙂
Thanks, Cort – this sounds very interesting.
That’s not a phone number we can dial from outside the US – do you know if they’ll be posting a recording of the call on Youtube or something, later?
I’m not sure but my recollection is that the other talks were made available. I don’t see why it wouldn’t be.
Cort, I noticed that Dr. Unger is Branch Chief over Chronic Viral Diseases. Last I’d looked at the CDC organizational chart, we were lumped in with chronic diseases in general which included asthma, heart disease, and diabetes. Did they re-do this and did we benefit from falling under another branch? Unless my memory is failing me again….. Marcie
Hummm – not sure…We started out in viral and we are apparently still in it…I don’t know if we got out and got back in or not ?
Great news and looking forward to the outcomes of this meeting.
As for the reporting of Gynecological hormone issue,how does this fit with men who suffer with this very debilitating disease?I for one know for a fact that hormones thearpy is part of the treatment protocol in men with ME/CFS.As for myself i get have to get shots twice a month along with B-12.The other men in our support group are also getting the same shots.I dont think for a minute this Hormone Problem is just a women problem in this fight with this disease.
Yes, according to Broderick testosterone is a protective factor for men – which means that if your testosterone levels are low – that would put you at risk. Some men do benefit from testosterone creams..
In my case the effects of low testosterone doubles the Pain Levels and Doubles the Fatigue and Brain Fog.I also have a friend who is a retired veteran 48 yr old who suffers with PTSD/Gulf War Syndrom and also diagnosed with CFS.He to recieves Testosterone shots twice monthly and if his testosterone like me gets low he to suffers double the fatigue and all over joinjt and muscle pain and brain fog.I think one day researchers will put two and two together and find that some of the syndroms like Gulf War Syndrom,Fibromyalgia,PTSD,CFS/ME have the same common denominator.
Thank you Cort for what you do and taking the time to respond to so many of us at times.Its allways so good to get responce from you.
My experience with this illness is that everything has been low–low brain function, low endocrine system in all ways, low immune system, low temperature, low blood pressure. I have the CCC version of SEID, if I venture into that acronym. My gynecologist really wanted me to get a hysterectomy when I had so much bleeding, because she saw that much bleeding as very abnormal in a very low hormone environment. But the extremity of this operation seemed too much so I opted for a D & C (uterine check up) instead. Turned out there was no cancer, which my gyn expected to find. I had to do this again the following year too to satisfy her that “nothing was going on”. This gyn knew nothing about ME/CFS and its possible complications. I had only read that there were some but didn’t know what. Anyway, with my experience, I am curious to hear what Dr. Montoya is learning!
Inflammatory Limbic Encephalopathy sounds very similar to Limbic Encephalitis These diseases are generally caused by defects in Ion Channel function, which, has repeatedly come up in ME/CFS studies. I would be very interested to know whether Montoya/Zinns/Lights think that Ion Channel function (whether caused by inflammation or damaged in some way) is causing many of the problems in this disease. Many people with CFS test positive for Ion Channel antibodies.
Cort,
Cort, thanks for another very informative blog. But – think big – we need much more than $50 million – far more. At least as much as that given to MS, with half as many sufferers – over $100 million (MS gets $114,000 per year from the NIH).
As to Dr. Goldstein: He understood this disease in the early 1990’s better than anyone before or since, imo. He was fantastic. I still have all the CFIDS’ Chronicles from those years; he often wrote for it. But were his writings considered by the IOM? I don’t know, but I very much doubt it, as they were not “evidence based,” i.e., based on trials with controls vs. patients and large groups of both.
My problem with the whole “evidence based medicine” concept is that EBM only came into being and practice in the mid-1990’s. Yet all the studies done before that which were not large enough or trials with controls vs. patients are not even considered valid anymore; witness the fact that the IOM did not use such studies in their determination of either the name or the diagnosis. It’s as if medical knowledge before then was wrong, untrustworthy, etc. A silly, illogical way of valuing (or devaluing) hundreds of years of medical experience. Thus the brilliance the findings of a man like Dr. Goldstein is rejected – not evidence based medicine. I am very sorry to hear he is not well. He’s still my hero and would love to hear him speak somewhere at some time.
So Angela
why did you suddenly make antibodies to lyme? why did your immune system switch on?
thanks
“a large gene expression study strongly suggested that ME/CFS looked very much like “systemic inflammatory syndrome”.”
Do you have a link for more info on this gene expression inflammation study? I wish I could listen to this call on Monday.
Btw, where does a CFS/ME patient go to find a good doctor, these days? I know co-cure used to have a list, but the site is dead. I may need a new doctor very soon. 🙁
If you go to the Stanford Chronic Fatigue Syndrome website you should be able to find a video of the Symposium in which the talk was embedded. The paper has not been published you to my knowledge.
Thanks, Cort. No wonder I couldn’t find more info, It will be very interesting to hear the results when they are published. Inflammation is a key area for focus.
Here is the link for anyone else interested: (Video titled Gene Expression Findings in ME/CFS, Amit Kaushal, MD, PhD).
http://med.stanford.edu/chronicfatiguesyndrome/2014SymposiumVideo.html
I don’t think the PCOCA calls have been recorded or made available in any form before.
What we have had sometimes has been a transcript made by a patient.
Anyone up for either recording the call and post that, or for transcribing?
Thanks Anne – I would record it if I could figure out how to do so..
Feeling pretty stupid right now. Put the call on my calendar to listen in–but only now thought to check on the time zone. Dang! I’ll be looking to you, Cort, for a summary or possible link to recording.
Dr. Unger said that no recording will be made of this talk and no transcript made either. But someone over on Phoenix Rising made a recording and may be posting it later today.
I want to see the post later on…