SIMMARONS NATIONAL INSTITUTES of HEALTH PROJECT
Only the Simmaron Research Foundation, thus far, has access to the NIH’s ME/CFS samples gathered during the XMRV study
Hundreds of precious samples from chronic fatigue syndrome (ME/CFS) patients sit frozen in the NIH’s sample repository. Gathered by ME/CFS experts during the big XMRV study, many are from long-term, highly debilitated patients. They are the real deal. The key to chronic fatigue syndrome may sit in those samples.
Nobody outside the government has had the opportunity to use them – until now. The Simmaron Research Foundation has been granted use of them – the first non-governmental organization to get that opportunity – for a special project to examine tick and mosquito-borne disorders in this disorder.
The CDC lists eleven tick-borne illnesses (including Lyme disease) and 10 mosquit0-borne illnesses (including many encephalopathies) in the U.S. Could your ME/CFS have started with a tick bite? How about a seemingly innocent mosquito bite?
The study is 70% funded and your donation will be doubled using the $50,000 grant Simmaron has received. Please help Simmaron redefine ME/CFS by contributing to this project or find out more below in Simmaron’s October Newsletter.
SIMMARON: PAST AND FUTURE – THE SIMMARON NEWSLETTER
Simmaron is Producing Results
Simmaron’s spinal fluid studies take center stage as Dr. Lipkin announces evidence of biomarkers, immune activation, and disease progression
Dr. Daniel Peterson, Sierra Internal Medicine and Simmaron Research
On September 10, 2013, Dr. Ian Lipkin from Columbia University surprised everyone when he presented preliminary results from multiple studies of Chronic Fatigue Syndrome (ME/CFS) on a public call hosted by CDC’s Dr. Elizabeth Unger. The talk, entitled “Infection and Immunity in CFS”, featured spinal fluid contributed by Simmaron Research, and the results he outlined across the multiple studies were spectacular.
Lipkin’s team is finding evidence of immune activation and biomarkers in blood and spinal fluid that he described as “significant leads that merit follow-up”. Dr. Daniel Peterson, Scientific Advisor to Simmaron Research, provided a rare resource: two sets of cerebral spinal fluid samples, one from CFS patients and a second from CFS patients who subsequently developed cancer.
These samples allowed the researchers to get as close to the brain – long thought to be a key area in chronic fatigue syndrome – as they could to find inflammation that could cause the neurological symptoms patients know too well.
Dr. Lipkin led two landmark blood studies simultaneously with the spinal fluid studies, one sponsored by the Chronic Fatigue Initiative utilizing samples from six sites like Dr. Peterson’s and Dr. Klimas’, and one with Dr. Jose Montoya.
Biomarkers
Dr. Ian Lipkin, Center for Infection and Immunity, Columbia University
Dr. Lipkin described a pattern of immune activation, evidenced by abnormalities in cytokines IL-17, IL-2, IL-8 and TNF-a in blood. In addition, cytokines in blood suggested a different pattern of immune dysregulation was present in newer onset patients (being diagnosed at three years or less) than patients with a longer duration of illness (more than three years.)
Eosinophils and other markers suggested to Dr. Lipkin that an allergic response was enhanced in ME/CFS early on, and those markers distinguished a “break point” at three years of illness, such that patients who had been ill less than three years could be segregated by biomarkers from both controls and long term patients.
On the other hand, cytokine abnormalities in spinal fluid were consistent among the ME/CFS patients regardless of how long they were sick. Biological tests to diagnose our illness are within sight, and there may be biological evidence for progression of illness.
Looking Forward
Viruses have always been the elephant in the room in ME/CFS. Dr. Lipkin said he believes the “primary cause is likely to be an infectious agent.”
“I have waited 15 years to hear a scientist the caliber of Dr. Lipkin say he has found biomarkers and bring his exceptional experience to researching ME/CFS. I thank Dr. Lipkin for his hard work and Dr. Peterson for making a breakthrough possibleLooking Forw
While Dr. Lipkin did not find active viruses, he intends to look for “shadows” of infections that tripped up the immune system in future studies. He also stated the microbiome is where ‘the action’ will be in ME/CFS.
In close collaboration with his ME/CFS experts, Dr. Lipkin’s team is following these results with deep sequencing of samples, completion of fecal matter analysis and larger studies to confirm and deepen the understanding of cytokines as biomarkers.
Dr. Lipkin’s studies, easily the most rigorous of their type ever attempted in ME/CFS, will forever alter the course of research and treatment of this disorder. Still, much more science needs to be done.
Simmaron’s Next Steps and $50,000 Matching Opportunity!
With your help, Simmaron funded a spinal fluid study designed to be complementary to the Lipkin studies – the Australian study at Griffith University. Those results will be forthcoming early next year.
Now, Simmaron is raising funds for two new studies to build on the Lipkin results and a Physician Fellowship:
- Tick and Arthropod-Borne Disease in Post-Infectious Fatigue: Simmaron is the only non-governmental organization to be awarded residual samples from NIH’s XMRV study, collected under Dr. Lipkin’s leadership. We have raised 70% of the funding for this study. Help put us over the top!
- Prevalence of clonal T-cell receptor gamma gene rearrangements in CFS: This study will investigate the value of analyzing T-cell gene rearrangements in identifying a subset of patients who are at risk of developing cancer, for diagnostic and treatment purposes.
- Additionally, Simmaron is raising funds for a Physician Fellowship Program to train the next generation of expert clinicians in ME/CFS under Dr. Peterson. Simmaron is uniquely positioned to take leadership in training fellows given Dr. Peterson’s expertise in diagnosis and treatment of CFS/ME and his understanding of clinical research.
Simmaron Research is proud to be a collaborator in these studies with such notable researchers and institutions. This kind of cutting edge work could not be possible without the continued support of our donors. We honor your donations by running a very lean organization, comprised of an expert science team, an Administrative Director and a volunteer board.
Please consider contributing to the next stage of research to scientifically redefine ME/CFS.
Donate now to be a part of helping Simmaron Research scientifically redefine ME/CFS.
For additional information, visit our website or contact Holly Evers via email or call (775) 298-0030.
I am really happy Simmaron is going to look further into the former-XMRV blood samples. I wonder what method he will use to detect Lyme disease as normal tests often show up falsly negative..
Those are probably the best samples we have; they’re from all over the country and from great doctors. Good question on Lyme :)..Maybe someone will give us an answer.
I’ve had chronic fatigue for 26 yrs and have tested negative to Lymes and Mono. (Had to figure out what was wrong by myself after a Dr telling me I had mono 2 yrs in a row!) Wondering if I had West Nile this past summer, as the fatigue was the worst ever…didn’t bother to get tested, tho, as we have no insurance and can’t keep up with the bills…I wish SOMEONE would figure out how to help me! The severe depression and fatigue are much more disabling for me than the aches and pains. I keep having bad reactions to meds, and barely make it thru the winter on Cymbalta, which is the only med I’ve been able to stay on, and it certainly isn’t doing a very good job helping me function anymore…Sometimes I feel so helpless and hopeless. I am doing some dietary/nutritional things. I think they’re right when they say getting the gut healthy is the key to recovery, but it’s so hard to figure out on your own esp when a person’s exhausted and has brain-fog most of the time…
Anybody would be depressed given the financial problems alone.
Hang in there! Take it one minute at a time…Have you checked out Obamacare yet? It may really help..
So glad to read about the research. Dr. Lipkin’s finding that there appears to be an allergic response is really intriguing for me. The very first of my numerous chronic health issues started with pollen allergies back in the early 80’s. From there I went on to develop fibromyalgia, rheumatoid arthritis and now chronic fatigue. I’ve always believed that they were all somehow connected. Recently my cfs doctor has urged me to go gluten free and sure enough I’m showing at least a moderate intolerance of gluten-containing products (I don’t think I noticed it before because I’m on immuno-suppresants for the ra. It’d be really great if some of the researchers would look at the allergy aspect in a general way to see if there is a connection.
Hey EC, mast cells could be a big player in all these diseases. They can cause POT’s, are implicated in IBS and some researchers think they may be imnplicated in ME/CFS and FM….Have you thought of an anti-histamine diet?
That’s a new one to me. What foods are prohibited? Thanks.
http://www.iamast.com/triggers/4564744723
This girl has a very big site and lots of information on MCAS. Not everyone will react to the same foods. And, one day you may react and another day you won’t. It’s very unpredictable.
There are several MCAS forums that are good.
http://geneticgenie.org/blog/2013/01/31/mast-cell-activation-disorder-mcad-chronic-illness-and-its-role-in-methylation/
Issie
Thanks for the link.
Thank you for this information. I’ve just left a message on the Simmeron Site to say, that I have just informed my GP, regarding ‘Skeeters ‘Syndrome’ due to mosquito bites. I received a severe reaction to them while living abroad and have only just found this allergic reaction can cause all the ME symptoms I have.
Very interesting.
Thank you
Ha! Interesting – never heard of it – Thanks for passing that on.
OMGoodness, my doc has been in research and testing for protozoa related to mosquitoes and ticks for many years now. He feels that many of our illnesses are related to this protozoa called Protomyzoa Rheumatica or FL1953. There is a dye that he uses to detect this and he has found that some of us that have it —also have Lyme and/or co-infections that go along with it.
Here is a paper of an interview that was published and his ideas, and findings in this regard.
http://www.iadvocatehealth.org/protozoal_infection0.aspx
http://lookingatlyme.blogspot.com/2012/07/protomyxzoa-rheumatica-implicated-in.html
I have this and Ehrlichia.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC145301/
Using his protocol that addresses the immune system and a special diet that is low-fat, whole food, vegan —-has made more difference for me than anything else I’ve done.
I asked him one time of the significance of the Protomyzoa Rheumatica in comparison to Lyme and coinfections. He had me look at the electrical socket in wall. He said, you see where you plug in that little space there —that’s how small Lyme and coinfections are. This protozoa is like the size of the whole room. It’s huge and makes a big impact on the body. (I may not have that conversation perfectly. But, that’s what I took away from it.)
I understand that his papers are being peer reviewed, right this minute, and expecting to be published some time soon. He is one man, without the backing of big money —-but, he for sure should have the credit of his discovery.
He has treated many with CFS, ALS, MS and POTS. For the ones that follow what he tells us to do —exactly —we are getting good results. Those who half heartedly do what he tells us —not as much results.
I wish the Simmaron group could coordinate their efforts with his. It might would be a wonderful mix.
Just from my experience, over the last year, and what I’ve learned in regard to this, I feel there is something to this. For sure addressing it with low dose antibiotics and anti-malarial herbs and alternative treatments that address the immune system has been a big help. But, the main thing is diet. I’ve recently been listening to videos and reading blogs from other doctors saying that food could be the epigenetic substance that we seek. If a gene can be activated and turned on, likely it can be turned off. Food may be that key.
The key thing to note is virus, pathogens and bacteria live in biofilms. You must break down those biofilms to get to the organisms or else they continue to live and proliferate. This is one of the things that some are over looking in their treatment.
Issie
Thanks for the links. Sounds like this doctor is on to something important. Wish there was a way to get him, Dr Lipkin, and Dr Simmaron to collaborate.
Yes, They certainly have in the past with the XMRV and CFI pathogen study and with Simmaron’s spinal fluid, and I hope they do in the future. I think Simmaron has a good connection there. In fact, with Simmaron being granted use of those samples, I imagine they have a very good connection. 🙂
Ha! I had no idea….Let’s see if we can get them together..He sounds like an evocative guy 🙂
Yeah, that would be good. Maybe, he could test the samples for this protozoa. Could be the key.
How do we get them together? LOL! Sounds like we’re trying to set them up on a blind date. 🙂 Would be nice for them to combine findings. If they want to talk to me, I’ll be glad to share my experience.
Dr. Fry has been the doc that has given me direction that has made a difference. Of course, I also have MCAS (which was discussed above) and Dr. Goodman, my neuro at Mayo is who helps me with that and POTS. But, the treatment that I’m doing with Dr. Fry is helping my POTS too.
As for MCAS and a diet – that does make a difference but we also have to treat with H1 and H2’s (Allegra and Zantac – is the ones I use). And some of us also use a mast cell stabilizer (I use GastroCrom). These things we have to take daily – sometimes more than one time a day. I seldom have to use the H1 and H2’s more than once a day – but, use the mast cell stabilizers several times a day. (However, there is one girl that has a blog site that is no longer using meds and has been able to control her symptoms pretty well with diet alone. So far, I can’t just depend on diet – I need more.) Here is her blog site.
http://thelowhistaminechef.com/
Because I’m a low-fat, vegan and can’t use any animal products with the diet that Dr. Fry has me on for the protozoa – some of the foods she suggest is off limits. But, I enjoy reading what she writes and there is good info on MCAS. She is very open and honest about how MCAS affects her and holds nothing back as to telling of her symptoms with it. Of course, we are all learning about how to live with this and what one person may think today —could change tomorrow. We learn a lot with trial and error. I personally find that being vegan has helped with the mast cell issues and I don’t have as many problems since adopting this lifestyle.
One thing this diet has done for me is I was in 3rd stage of Chronic Kidney Disease and it has improved to almost be in stage 1. Also, all my labs have improved in every way. I’ve also lost some weight that I wanted to lose. My energy is better and some days I don’t even have the blood pressure or heart rate to indicate POTS. But, that is still there – just is better and less intense. I still have issues with standing in one place for too long. I still have to search out chairs pretty fast – when I feel that wave of faintness over taking me with the crazy tachycardia that comes with it. (Though, I’m not a fainter.) I can see improvements – although a slow thing – but going in the right direction.
Issie
Issie,
I went back and re-read your link to Dr. Fry’s interview about the protozoa infection this morning. I am particularly struck by something he said about the protozoan not liking heat. During the 3 years since I’ve been diagnosed with cfs/me I’ve noticed a pronounced amount of night-time sweating (I’m not menopausal) during sleep and subsequent chills once the sweating is over. Until now there didn’t seem to be any rhyme/reason to it. However after reading the interview again, it makes better sense. My dinner last night was laden with an abnormally heavy amount of fatty foods. If it’s true as Dr. Fry surmises that the protozoa explodes in growth when fed a high fat diet, then maybe the sweating occurs because the immune system is trying to get rid of the protozoa. It also seems like the fibro and r.a. symptoms worsen when I’ve had high fat meals. I’m going to give a low-fat diet a try and see what happens, then eat a couple of high fat meals to see if the nights sweats reoccur. Thanks again for the link.
Interesting. I love it when we feel that we have put some of our puzzle pieces together. I don’t know if that would have caused your reaction or not. But, that’s an interesting observation. Please let me know what your experiment uncovers.
Hoping that you are close to more answers.
Issie
Re:allergies
I had ME/CFS for around 6 years triggered by the parasite toxoplasmosis.At its worst I had total
chemical sensitivity. I was in San Franscio once and had to go the emergancy and have IV antihistmaines three times in reaction to stuff they clean planes with. I WAS SO SWOLLEN I COULDN’T SEE OUT OF MY PUFFED UP EYES. So I know what a central issue allergy can be. I reacted to just about all drugs , as well as common cleaners etc etc.
BUT WHEN I RECOVERED THE ALLERGIES WENT AWAY AND HAVE STAYED AWAY.
I went the whole alternative hog and had a very restricted four day rotational diet, Went completely organic and got rid of all chemicals in the house, I did a raft of other stuff including the ‘Healthy House’ cleansing and homeopathy.(Healthy House is a UK website) I used homeopathic injections from Germany for the toxo etc.It was a huge faff but while I have absolutely no idea if any of this made a difference I am now well and stay well. The stress and lack of understanding killed my marriage and nearly broke the bank BUT
SO HANG IN THERE , there maybe life after ME/CFS even after some years of it, and Cort and Simmarron are clearly on the right lines to understand this horror.
What a story Phillida! How long did it take for you to recover? Are you still on that restrictive diet? Do you do anything special now?
One of my early symptoms was onset of allergies to multiple environmental agents. Prior to my sudden onset of a flu-like illness, I wasn’t allergic to anything. Then, suddenly I had chronic daily year-round hay fever (and intolerant to odors, perfumes, solvent, smoke). Because I’d never been allergic to anything before, I didn’t recognize the symptoms. A friend (a psychiatrist, believe it or not), when I told him I thought I had CFS (this was around 1995), said, “I know several people with that and they all suffer from allergies,” and suggested I try an antihistamine. Happily, I found significant relief of sore throat, stuffy nose, plugged ears, etc. Wish I’d had such a simple solution to the other symptoms! But, it has always struck me as notable, that sudden onset of multiple allergies when I’d had none before. Eosinophilia is a sign of allergic response. Wish I had a blood count from those early days. Definitely a clue in there somewhere. Thanks for interesting report, Cort.
Hello! I have been diagnosed by CFS and Fibromyalgia about 6years ago after there had been found Borrelia in my blood. I had to take antibiotics for a month and a few tests were done. According to my doctor I had no Lyme disease but the Borrelia would have been a trigger for my CFS and Fibro. I really hope further research will give more certainty in the future and hopefully a efficient therapy and remedy can be found.
I too started this illness with allergies. Went to many ear nose throat drs…did allergy testing. Started allergy shots and got worse. Then the fatigue hit. I think when this virus or illness hits the immune system..our body attacks everything. I never get the flu or colds. Maybe the fatigue comes from an overactive immune system. I also reciently found out my dentalt implants have been infected for years. Now I’m looking at surgery to have them removed . My dr thinks maybe this could be part of the problem. So remove implants..do bone grafts..more implants..crowns and $24, 000. Well worth it if I get better.