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Simmaron’s Spinal Fluid Study Finds Dramatic Differences in Chronic Fatigue Syndrome

April 3, 2015

“Our results indicate a markedly disturbed immune signature in the CSF of ME/CFS subjects that is consistent with immune activation in the CNS.”

Dr. Mady Hornig, Director of Translation Research, Columbia University

The Hornig/Lipkin lab at Columbia University is involved in numerous ME/CFS studies

Columbia University just published groundbreaking results of the first spinal fluid study to compare ME/CFS with Multiple Sclerosis and healthy controls. For almost his entire career treating CFS patients, Dr. Daniel Peterson has been working toward this day.

Simmaron Research, founded by Dr. Peterson, was a key collaborator in this study, along with Konstance Knox Ph.D. of Coppe Healthcare. Drs. Peterson and Knox provided the spinal fluid samples, and Simmaron’s Research Manager Gunnar Gottschalk did clinical coordination. Drs. Mady Hornig (lead author) and Ian Lipkin (senior author), who run Columbia’s Center for Infection and Immunity, designed the study and led the sample and data analyses. Many thanks are due all the collaborators and especially  the Chronic Fatigue Initiative and Evans Foundation for funding this novel work.

Molecular Psychiatry. 2015 Mar 31. doi: 10.1038/mp.2015.29. [Epub ahead of print]Cytokine network analysis of cerebrospinal fluid in myalgic encephalomyelitis/chronic fatigue syndrome. Hornig M1, Gottschalk G2, Peterson DL2, Knox KK3, Schultz AF4, Eddy ML4, Che X4, Lipkin WI5.

Cerebral spinal fluid is a colorless fluid that surrounds and cushions the brain and spine. Constantly being produced and absorbed it is fully replaced about four times a day. It provides immunological protection and removes metabolic wastes from the brain.

Lumbar punctures such as those used in this study are primarily used to diagnose neurological disorders.

cerebral spinal fluid

Cerebral spinal fluid protects and removes metabolic wastes from the brain

In several ways, this study distinguished itself from other spinal fluid studies in chronic fatigue syndrome. It examined a more comprehensive cytokine panel (n=51), did more sophisticated statistical analyses (logistic regression/network analysis) and included a multiple sclerosis group as a control. With ninety-one subjects, it was a large sample size for a spinal fluid study (32 ME/CFS patients, 40 MS patients, 19 controls) and it was suitably complex.

Highly Significant Results

Major differences were found. With all the central nervous system problems present in MS, we expect MS would be different from healthy controls. The levels of over half of the cytokines tested (26/51) in the MS group vs the controls were significantly different. An almost equal degree of difference, however, also occurred in the ME/CFS group. Almost half the immune factors tested (23/51) were significantly different in the ME/CFS patients relative to the healthy controls.

Highly significant differences in immune factor levels (p<.0003 or less) were found in 13 cytokines in MS group vs healthy controls, in 4 cytokines in ME/CFS vs healthy controls, and in 8 cytokines comparing ME/CFS to MS.

Immune Exhaustion

reduced immune factors in chronic fatigue syndrome

Most immune molecules were lower in both the ME/CFS and MS patients

The immune system is a complex place. Cytokines have a role in both producing and controlling inflammation. Some evidence points to ME/CFS being an inflammatory disorder, and there’s no doubt that multiple sclerosis is an inflammatory disorder. Interestingly, the cytokine levels in the MS  patients spinal fluid were even lower than those in the ME/CFS patients.

In general both MS patients and ME/CFS trended in the same direction – mostly reduced cytokine levels relative to the controls – but the immune dysregulation was very different. With twenty-three immune factors differing between the ME/CFS and MS patients, a case could be made that the ME/CFS and MS groups differed the most immunologically. The researchers stated ME/CFS patients demonstrated a “markedly greater degree of CNS immune activation” than the MS group.

People in the current study had had chronic fatigue syndrome for about seven years. The relatively low cytokine levels found parallel those found in the longer duration patients in the large blood cytokine study the Columbia researchers recently completed.

“I think what we’re seeing is an immune system exhaustion over time,” Dr. Hornig speculated in HealthDay.

Chemokines, Infections and CNS Damage

Scientists at Columbia … identified a unique pattern of immune molecules in the cerebrospinal fluid of people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) that provides insights into the basis for cognitive dysfunction—frequently described by patients as “brain fog”

Chemokines are of special interest in neuroinflammation because these very small proteins regulate immune cell entry into the brain. When an infection occurs, they draw immune cells into the brain by increasing the permeability of the brain blood barrier. The microglia and astrocytes are the primary chemokine producers in the brain.

Infection or demyelination possible in ME/CFS

High CXCL10 levels have been associated with infection or demyelination

Two chemokines (CCL11 and CXCL10) were increased in both the MS and ME/CFS groups with much higher levels of both found in the MS group.

CXCL10 clears the way for the entry of natural killer cells and T lymphocytes into the brain. It is often prominently expressed in the CNS in response to viral infection.

As always the immune system walks a fine line. Too little chemokine expression and a deadly infection can take root. Too much chemokine expression and brain damage and seizures can result. While CXCL10 plays an important role in combating viral infections, excessive CXCL10 levels can cause neuron die off and trigger a immune-mediated demyelinating disease.

Demyelination is a major problem in MS but is only a possibility at this point in ME/CFS. A small recent Stanford study suggested myelin abnormalities along with white matter atrophy may be present in ME/CFS. .

Not surprisingly, CXLC10 clearly has an impact on symptoms. Neutralizing CXCL10 even during a persistent infection can greatly reduce symptom severity.

Allergic Response, Eotaxin and Brain Fog

“These immune findings may contribute to symptoms in both the peripheral parts of the body and the brain, from muscle weakness to brain fog.” Dr. Mady Hornig

IL1ra is supposed to tamp down an allergic response as well. The network analysis in this study suggests that it’s not working so well in ME/CFS patients. The inverse relationship between IL1ra and CSF2 (GMCSF) levels in the ME/CFS patients, indeed, suggested an allergic response was underway. Reduced CSF2 levels were found in a prior ME/CFS spinal fluid study as well.

Then there is eotaxin (CCLII). Eotaxin recruits white blood cells called eosinophils that are involved in producing an allergic response in the brain. The logistic regression suggested increased levels of eotaxin (and decreased levels of IL1b) are highly associated with “ME/CFS caseness”.

eotaxin chronic fatigue syndrome

Eotaxin has been associated with cognitive declines and reduced neuron growth in mice.

Eotaxin is not a chemokine one particularly wants to have around. Increased eotaxin levels have been associated with impaired learning, memory deficits and reduced neuron production in mice as they age. Introducing eotaxin into the CNS of young mice reduces neuron production. (At the last IACFS/ME Conference, the CDC reported reduced telomere length – another possible sign of increased aging – was present in ME/CFS.)

“…we now identify systemic immune-related factors (eotaxin) as potentially critical contributors to the susceptibility of the aging brain to cognitive impairments”. Villeda et. al. 2011 – From a mouse study published in Nature

One doesn’t think of allergy in terms of the central nervous system, but the authors reported that allergic processes could be indicative of a central nervous system infection. The chemokines upregulated in the ME/CFS patient’s spinal fluid have been associated with microglial activation and central nervous system infections.As the publication notes, “Persistent secretion of cytokines by activated microglia, brain immune cells of macrophage-monocyte lineage, may contribute to this pattern.”

Networks Awry

“The inverse relationship we found between IL1ra and CSF2 in the CSF of cases using a network analysis approach suggests that neuroimmune responses may be shifted toward allergic or Th2 (autoimmune) patterns in the CNS of individuals with ME/CFS.”

The Hornig/Lipkin team also found evidence of disturbed “networking” in ME/CFS; i.e. immune cells communicating strangely. IL-1ra is an interleukin that prevents cells with IL-1 receptors from producing the powerful pro-inflammatory cytokines IL-1A or IL-1B. It stops that part of the immune response in its tracks, but the network analysis suggested it wasn’t doing that in ME/CFS.

Summing Up

  1.  The fact that the alterations in the immune factors in the ME/CFS were almost as extreme as in multiple sclerosis – a disorder characterized by severe central nervous system dysfunction –  suggests a major pathology is present in the central nervous systems of ME/CFS patients.
  2. The low cytokine levels suggest that some sort of immune exhaustion –  caused by an infection or by immune upregulation – is present in ME/CFS.  These findings parallel those of the recent Hornig/Lipkin study suggesting that  immune up regulation early in the disorder may lead to immune burnout later on.
  3. Several of the immune factors in the ME/CFS patients spinal fluid suggest an allergic type of reaction may be occurring in their CNS. A similar finding is also found in some central nervous system infections; i.e. an infection could be driving this process.
  4. The immune factor most identified with the ME/CFS patients has been associated with cognitive declines, aging and reduced neuron production.

Moving Forward

“Diagnosis of ME/CFS is now based on clinical criteria. Our findings offer the hope of objective diagnostic tests for disease as well as the potential for therapies that correct the imbalance in cytokine levels seen in people with ME/CFS at different stages of their disease,” adds W. Ian Lipkin, MD, John Snow Professor of Epidemiology and director of the Center for Infection and Immunity.

Daniel Peterson

Dr. Daniel Peterson

Early on, MS didn’t have biomarkers or diagnostic tests, and it had skeptics like CFS does. Later it was diagnosed by specific proteins in spinal fluid. Now there are FDA-approved treatments.

ME/CFS patients often have central nervous system symptoms, like cognitive dysfunction, balance problems, and nerve and pain issues. Those symptoms convinced Dr. Peterson many years ago that spinal fluid may hold the key to understanding the disease. His perseverance helped make this study possible.

Columbia University’s press release stated:

“There is precedent for use of human monoclonal antibodies that regulate the immune response in a wide range of disorders from rheumatoid arthritis to multiple sclerosis. However, the researchers note, additional work will be needed to assess the safety and efficacy of this approach.”

We need more research to translate these unprecedented findings into diagnostics and treatments.

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  • Lil

    April 3, 2015 at 7:52 pm - Reply

    Interesting………I once read of a study they did years ago and also found low B12 levels in the CSF, however in the serum it was normal or even high if they were taken B12……….suggesting that the B12 was not crossing the BBB due to a possible malfunction of the astrocytes This study was on Fibromyalgia and/or CFS/ME. It was so long ago I seen it but I believe it was done somewhere over in Europe, maybe it was Sweden. Currently I take LDN to help regulate the microglia for CFS/ME. But as far as I know, their is no med or treatment to regulate the astrocytes as of get. I feel this is key………to figure out how to regulate the Astrocytes.

    • Cort Johnson

      April 3, 2015 at 10:07 pm - Reply

      Indeed. Maes believes inflammation caused microglial activation and astrocyte depletion may be at the heart of many disorders. In fact inflammation may not need to be high if the microglial have become sensitized over time. That could be a real possibility if immune activation is really high early in the disorder as the recent Hornig/Lipkin study suggests.

      I think it’s significant that the last two studies by Hornig and Lipkin have found similar results.

      Other studies have examined the protein content of the CSF in ME/CFS – and have found abnormalities there as well.

  • Taylor

    April 3, 2015 at 9:54 pm - Reply

    This explains so many of my ME/CFS symptoms and problems. No one (doctors, family, friends) ever believed that I could be having so many severe problems. Debilitating central nervus system problems, extreme allergic reactions, and “invisable’ infammation have been out-of-control in my case of ME/CFS. After 25 years of intense suffering, it is a relief to hear that I may not be as crazy as people (doctors, family, friends) think I am !

    • Cort Johnson

      April 3, 2015 at 10:04 pm - Reply

      That’s a long time to be misunderstood like that! It’s amazing what so many people have to deal with. Glad you’ve been able to hang in there. 🙂

  • marcie myers

    April 3, 2015 at 10:03 pm - Reply

    My brother has MS and I’m kind of dainbread right now but this article shot right past me. There are differences. Anyone care to eleborate in a 101 kind of way? marcie meyrs

    • Cort Johnson

      April 3, 2015 at 10:16 pm - Reply

      I hate it when I’m dain bread…..:)

      • The fact that the alterations in the immune factors in the ME/CFS were almost as extreme as in multiple sclerosis – a disorder characterized by severe central nervous system dysfunction – suggests a major pathology is present in the central nervous systems of ME/CFS patients.
      • The low cytokine levels suggests that some sort of immune exhaustion – caused by an infection or by immune upregulation is – is present in both ME/CFS and MS. These findings buttress those of the recent Hornig/Lipkin study that suggested immune up regulation early in the disorder may lead to immune burnout later on.
      • Several of the immune factors in the ME/CFS patients spinal fluid suggest an allergic type of reaction may be occurring in their CNS. That is also found in some central nervous system infections – so an infection could be driving this process.
      • The immune factor most identified with the ME/CFS patients has been associated with cognitive declines, aging and reduced neuron production.

        I’m putting this in the post as well. Thanks for the idea.

  • Chris Boyt-Cullis

    April 3, 2015 at 11:57 pm - Reply

    I have had ME/fibromyalgia for many years, glandular fever in 1973 really started the gradual decline. Now I have brainfog, exhaustion that come on quickly if I do more (not much at all) than my body is happy with, orthostatic disfunction, unrefreshing sleep, etc etc. I have MCS which particularly includes sensitivity to perfumes, noise, and many foods and as I am living in an Aged Care/nursing home following a major relapse two years ago, I do not have a lot of say over how I live my life. I have been back on my feet for several months now, trying to find a way to get out of here but not go back to living on my own – not easy! I have several unrelated medical issues, hydrocephalus and Graves Disease which have both been successfully controlled with a cerabral shunt and radiation respectively, and cataracts/macula degeneration – I’m getting older but still young at heart at 66!

    • Carol

      April 8, 2015 at 3:04 pm - Reply

      Chris, I have had CFIDS ( I prefer the term, Chronic Fatigue and Immune Dysfunction Syndrome) since 1982 when I had symptoms of “some kind of mono type infection”. In 1989 I was diagnosed with chronic EBV. Since then my CFIDS has gone up and down. In 2012 I had a series of various illnesses, including infected gum/tooth leading to loss of my tooth, bulging disc leading to severe sciatica, which i still have, and heart issues leading to 2 heart procedures in Jan 2013, plus a procedure to inject cortisone into my spine in Jan 2013. Between all 3 procedures in Jan 2013 I had a major CDFIDS response. I should have been placed in a nursing home for a few days or couple of weeks, but instead was sent home to live alone with NO HELP after my surgery for a-fib in Jan 2013. Since then I have been very weak. Now have CNAs 5 day/week to help me as I am very weak Still need volunteers to go to store and do all driving, etc. My church leader thinks I should be in a nursing home, but I don’t need skilled nursing, just major help that anyone could do. Volunteers are in very short supply. I am 61 years old, so I sympathize with you. In 2011 I was well enough to drive by myself from Salt Lake City to the LA area to visit long lost cousins for Tthanksgiving. I was at my best in several years for that trip. Now I wonder if i am at my “new normal” with CFIDS.

      I have a CFIDS specialist in SLC, Dr. Lucinda Bateman, that I have seen since 2000, ie: 15 years. No treatments to help me. This study suggests immune problems for CFIDS patients, but NO TREATMENT. WHY? Since it has been known for over 30 years that I have chronic recurrence of EBV, why no treatment? I also have chemical sensitivity ( perfumes and petrochemicals) brain fog, and almost all the regular symptoms of CFIDS, including adrenal fatigue. I raised a severely ill quadriplegic son, who had a feeding tube and trach tube until he died just before his 26th birthday alone with NO FAMILY to help him, or me. No wonder I am exhausted and my system just can’t recover!!!

      • Maschelle

        March 23, 2018 at 6:38 am - Reply

        Carol, I’m sorry to hear about your son, and how long you’ve been ill. The 80’s was around the time of the Incline Village Outbreak… right? I have read so much about what the CDC said and did during that time that has hurt our credibility as honestly being very ill physically. Their actions and statements made people believe this was a psychological issue.. and that idea persists to this day. That is why you still see no treatment for what has caused you to be ill for so long. I do believe, however, that researchers are beginning to turn the tide on that thinking. I’ve been severely debilitated since 2006. Ironically, this article has a major theme that I can relate to.. the prospect that the CNS issues seen in ME/CFS is what is associated with the aging brain..
        Here are the interesting associations with the elderly that I have seen health care providers and the industry use that have an “elderly” theme yet were applied to myself when in my 40’s.
        I am now 56, but was suddenly severely affected cognitively and physically in my early 40’s. This was back in ’07, when I was still being firmly driven to a bed-ridden status by fervid GET. b4 telling my doctor I was becoming more debilitated by physical therapy and that she felt that GET was countraindicated (that word sounds, feels and looks like a bunch of mush. I doubt it is even a word) for treatment of ME/CFS and was having an opposite effect from what is normally seen in GET. She was, therefore, discontinuing Physical Therapy.. She told me very firmly that I looked young and healthy on the outside, but on the inside I was likened to a “96 yr. old with a heart problem”.. and to “sit on my type” A” personality and behave myself”. She then explained as hard as it was for herself as a physical therapist to wrap her head around the fact that exercise was making me weaker, that it appeared to be factual so she looked into it. She felt that the best thing she could do for me is to prescribe 3 half hour sessions daily of lying down in a room with as much sensory deprivation as possible. She told me that included light and sound. She said no TV, no music, White Noise if possible, no telephones and no talking to anybody that may be in the household. She then explained to me that we see exacerbation of our illness when we experience too strong of emotions or too much sensory input. And she said that, conversely, with this illness we have stronger emotions. She felt that it was very important to create an area 4 our brains to totally relax by taking away as much input as we can several times a day. That was probably one of the best things that has been done for me during the course of my illness. I cannot say that people cooperated with my request and turning off the ringer on my phone didn’t work because they show up at my house banging on the door. Extended family and friends have been unbelievably unsupportive of the things that really helped me since I became ill which is typical of most patient’s experience. Or so I understand.

        The second connection to what would normally be deemed something needed for the elderly is something that I think you would be interested in.
        I have been VERY lucky that our State has a program to help the “elderly” stay in their homes by having caregivers help with the sort of things you mentioned. Things we desperately need help with.
        us It is called “COPES” and is offered through the “Southwest Washington Agency on Aging and Disability” aka “SWAAD” . See the huge connection to aging and elderly? That is literally how I’m able to get insurance in this state. And I am considered unlikely to ever improve or recover based on the diagnosis of ME/CFS.

        Now that I’m getting very tired cognitively, and have been cutting and pasting paragraphs in their “proper order” for about 45 minutes trying to get this comment written, I just want to paste in a section that I think is important (to me at least.) While I can still remember how to paste something in and before I begin to drool uncontrollably and Nod off. Here goes…

        Early on in my disease I only had minor neurocognitive symptoms. They mainly centered around balance and brain fog.

        Still, physically I was diagnosed with ME/CFS in ’08 bye my rheumatologist , neurologist and general practitioner . We agreed to use the Canadian Consensus Criteria for the diagnosis. Based on my work up at that time I was operating at 15% of “normal for me” . That diagnosis is what allowed me to have a caregiver for 183 hours a month.
        *At that point in time I’d been diagnosed with 37 different conditions or “malfunctions” (as I like to think of it) . most of it falls under the umbrella of ME/CFS as it is today, but I expect we’ll be put into different sub-categories as research progresses. For now it is very important to have these individual conditions diagnosed for the purpose of dealing with hospital emergency rooms and qualifying for programs. They may not recognize ME/CFS as a physical condition yet, but they do recognize all 37 of the other diagnosis.*

        The illness began to include the neurocognitive regarding language within months of my initial diagnosis in 08 . It progressed very rapidly, and I now have severe problems with language. I well have not a single thought in my head when trying continue speaking a sentence, or finish writing my own name. There’s just a blank. I don’t know how to talk and the word talk doesn’t have a meaning to me. I will look at something I’ve just written and discover I wrote a number instead of a letter in the middle of my name and it doesn’t even fit with the flow of penmanship to where I could save myself some embarrassment by laughing it off as how about particular letter looks like the a number and anybody can make that mistake. I just end up standing there gaping with the person staring at me waiting for me to finish what I started. It’s very startling when that happens by the way. I find the more physically or mentally active I am the more likely I will start having a mental blank and then we’ll become emotionally bereft and need to be put to bed if I am up in my home, or out at the doctor’s office. In that case they need to just get me home and put me to bed. I just will start sobbing from cognitive exhaustion. I haven’t been able to read a book in years, and it’s very hard for me to read the articles here but I’ve always loved to read and love to learn and these words all used to make sense to me now I have to read the same sentence over and over again before it will finally take hold or it won’t and I have to just stop trying. It is one of the most frustrating things that I experience, the lack of being able to use my brain now that my body has failed me. I can’t even read a book or follow a TV show. And this rambling comment is also proof of problems with language!

        I normally don’t post comments because It embarrasses me. But there were a few things in here that I really wanted to share with you because of your situation with getting help. And also the person that you were replying to who is stuck in a nursing home. My family including the love of my life have basically ostracized me at this point. I have my four children that have never doubted me and are absolutely fantastic but because of Rapid mental exhaustion I don’t get to interact with them nearly enough! And that is something that I really do need, I guess every human does, interaction with other human beings. Doesn’t seem right that so many of us are isolated to one room for 99 percent of our existence. I only leave when going to a doctor appointment and that makes me extremely ill with post exertional malaise. That’s kind of ironic. I I was doing just fine doctor until you made me come in and now I’m sick. Hang in there! I find it somehow some way I’m able to find something to laugh at every single day and sometimes it’s through tears. But I am going to have a life even if it is a redefined life. I’m determined to enjoy the good parts!

  • Lisa K

    April 3, 2015 at 11:58 pm - Reply

    Fantastic. I’ve asked for spinal tap from neuro just to “have a peek” to see if anything stands out at him that might respond to some drug already in the pipeline (not necessarily specific to ME). Only response i had, “it’s not MS YET!!” and wouldn’t do a tap.
    Nothing would make me happier that to take study results (not sure if this one will be enough) to him and say “here, look for that!”.
    Btw, what specialization do you think would be more interested these days? Neurology, Immunology, Internal Medicine????
    I’m using portions of your synopsis on my facebook wall. Hope that’s ok Cort.
    As always, thank you for this info.
    It’s been a long 29 years and i feel it’s progressed a great deal over the past 6 or 7 years.

  • Lisa K

    April 3, 2015 at 11:59 pm - Reply

    ‘it’ being, the illness, not the research, although i agree we’re finally progressing in that dept. 🙂

  • analogue

    April 4, 2015 at 12:40 am - Reply

    Is the virus hunter satisfied that this is an infectious disease yet? Everything that he has done with this disease has turned up signs of infection. It’s time he went to work looking for the pathogen that is obviously there. Let’s start with the most suspected neurotropic pathogen, the enterovirus. Dr. Lipkin should reproduce Dr. Chia’s work as part of the Microbe Discovery Project. The sooner he does this the sooner we can get the drug companies interested in working on an antiviral and perhaps have a chance of curing this disease in a few decades.

  • Gary Solomon

    April 4, 2015 at 12:48 am - Reply

    Hi Marcie,

    My brother also has MS. My other brother has ME/SEID and my mother died from takayasu’s arteritis. I wonder how many other people with ME/SEID have strong family history of autoimmunity?

    • Dana

      April 4, 2015 at 1:24 pm - Reply

      I have ME/CFS and my brother has MS. I think my grandmother had ME/CFS as well.

      • Maschelle

        March 23, 2018 at 6:45 am - Reply

        my entire family is full of rheumatoid arthritis on my father’s side. I have inflammatory arthritis, and undifferentiated connective tissue disease, fibromyalgia and ME/CFS.
        one of my daughters has been diagnosed with fibromyalgia, and I am beginning to believe that the cluster of chronic health issues that have nearly totally sidelined my 17 year old daughter is Pediatric ME/CFS.
        she’s the only family member that lives in close proximity to me. I also have a genetic blood disorder Factor V Leiden positive with only one genetic marker. two of my three daughters share the diagnosis. I think my son also has it. is more common in women but men do get it. I think all of these interesting genetic commonalities will mean something as research goes on.

    • Pat

      April 4, 2015 at 5:40 pm - Reply

      I have Hashimoto’s thyroiditis and undifferentitated connective tissue disease in addition to ME/FM. My niece has ulcerative colitis (autoimmune), one cousin has lupus and several other family members have rheumatoid arthritis (needing knee replacements in their 40s-50s). Several aunts (now deceased) had RA as well as my father.

      • Cort Johnson

        April 4, 2015 at 5:42 pm - Reply

        Methinks I see a trend developing. I think Simmaron has a study underway looking at the outcome of long duration patients – and maybe there’s a family component (???). The CFI has a big epidemiological study going – hopefully that one does.

  • geoffrey keith brown

    April 4, 2015 at 12:56 am - Reply

    it had to be something like this post it to every gp in the world no good just telling us

  • better soon

    April 4, 2015 at 2:47 am - Reply

    I don’t think marcie myers is the only one that needed the study summarized! Thanks Cort!

    • Cort Johnson

      April 4, 2015 at 3:45 am - Reply


    • Cort Johnson

      April 4, 2015 at 3:47 am - Reply

      I’m glad she asked. It was a rough one 🙂

    • Pat

      April 4, 2015 at 5:41 pm - Reply

      I agree. We need a “like” button here! 😉

      • Cort Johnson

        April 4, 2015 at 5:43 pm - Reply

        No like button! You are right about that. Gotta get a Like button in here!

  • Jane

    April 4, 2015 at 12:26 pm - Reply

    Somehow I still hold out hope my former neurologist will come around…thinking of mailing him this along w/ the other recent study they did, my tilt table test, abnormal hormone tests, strongly pos SIBO results, going thru pics (I want to anyway) and sending ones in which I looked horribly ill etc. I am SOO grateful to now be a patient of Dr. P along w/ my dad who has CFS to a lesser extent than I (my aunt too). At my 1st appt last mo I told him a few times how thankful I was! He asked how I felt about taking CSF and I said I preferred now, but if it was deemed important to further my wellness or really needed/wanted for research I’d d it. We’ll see at my April 13 appt! Also thankful to be a part of some studies…apparently families affected are less common than individual cases. The good thing about it is we understand each other when others don’t and the bad thing is before I got sick w/ a bang I think my dad and aunt made one another feel normal…that this is what others must experience too. Older family members had persistent fatigue, pain, digestive issues (an aunt esp), one died of a bleeding ulcer (H. Pylori more common in ME/CFS from my understanding). Dad has had H. Pylori/ulcers a few times, and recurring EBV…my viral cause my have been Parvo B-19 but only checked a yr after illness. Had some virus that wasn’t identified at the time. Who knows how many ppl in my dad’s lineage truly had it to a degree at least. My mom’s aunt had FM at the least, her g-ma got horrible migraines, her dad gets them and doesn’t always feel good over the years or has pain but is now 94. Since I’ve been sick (was bedridden for almost 2 yrs) and they’ve gotten older and more tired/infections etc we’ve all realized (diagnosed also) that we’ve all got the same “thing”…dad, aunt, I, or rather more fully understanding it and the diagnosis my dad got in the late 80’s or early 90’s but never knew what it entailed…the PEM, brain fog, low aerobic threshold etc.

  • Tami

    April 4, 2015 at 1:29 pm - Reply

    Thanks for posting and for the explanation!.

    Chris Boyt-Cullis, Your attitude and resilience (just read about trial on that) are heart warming. I hope you can find a living situation that works well for you.

  • Christina Palfrey

    April 4, 2015 at 3:07 pm - Reply

    Was interested to hear that other MEers have relatives with the same or with MS. Both my daughters have ME, as have I (though it took years of being looked on as a hypochondriac by doctors before it was diagnosed). All three of my father’s sisters had M S, as does one of my cousins. I’ve wondered if there is a familial propensity to such diseases?

    • Cort Johnson

      April 4, 2015 at 3:36 pm - Reply

      It sure sounds like it in your family. We obviously could use more research in this area. My mother had Sjogren’s Syndrome – autoimmunity runs in my family as well.

  • Gregory Cutler

    April 4, 2015 at 8:59 pm - Reply

    Does anyone else ever wonder why 30+ years of studies hasn’t led to a single drug/treatment for our disease. We get to a sad story of someone really suffering miserably on Cort’s website, yet the “experts” really have nothing to help them. Doesn’t that translate into something like hundreds of thousands of people laying in bed with no real life? It really feels like at least this study has a purpose that could lead to a treatment outcome whereas so many others are just “studies” Especially all those like the “neuropsychologist studying the coping with chronic pain”. I fear too many of those studies drain our few precious resources!

  • Annemie

    April 5, 2015 at 6:15 am - Reply

    Let’s hope they’re not going to develop the same kind of medicins as for MS-patients. Expensive and horrible side effects.
    I stick to LDN, antivirals, antibiotics, thyroid, adrenal support and tailor-made supplements, they can change your life if well used.
    Excellent research, thanks for sharing.

    • Cort Johnson

      April 5, 2015 at 12:50 pm - Reply

      Glad to hear you’ve found some relief:)

    • Suzanne

      June 1, 2017 at 2:59 pm - Reply

      Annemie, I am interested in particular to your comment on “tailor made supplements”. How does one find a doctor who understands the need for multiple modalities of treatment and can analyze one’s need for certain supplements? Am in Minnesota but willing to travel!

  • Rachael

    April 5, 2015 at 2:47 pm - Reply

    Cytokine network analysis of cerebrospinal fluid in myalgic encephalomyelitis/chronic fatigue syndrome
    M Hornig1,2, G Gottschalk3, D L Peterson3, K K Knox4,5, A F Schultz1, M L Eddy1, X Che1 and W I Lipkin1,2,6

    Our results indicate a markedly disturbed immune signature in the cerebrospinal fluid of cases that is consistent with immune activation in the central nervous system, and a shift toward an allergic or T helper type-2 pattern associated with autoimmunity.

    A predominance of a Th2-type response is consistent with pathologies, such as autoimmunity and atopy, a genetic predisposition toward the development of hypersensitivity reactions against common environmental antigens.

  • Cynthia

    April 5, 2015 at 10:49 pm - Reply

    Maybe it’s just me but I stll feel that searching for any particular pathogen is leading us down a rabbit hole. It seems that anything that can stimulate an extreme immune respone in the brain could cause this disease, oreven an extreme allergic response, long after any pathogen or allergen is gone from the body. Or even exposure to a toxin could do it. I believe the thing to do is look for some treatment that corrects the out of control immune response regardless of the initial cause. I got ME/CFS after cancer treatment. Chemo and radiation saved my life but made me forever sick. Who knows what the exact cause was in my case! It could even have been caused by the drug they used to get my white blood cell count up above dangerously low levels–after a dose of that stuff my white blood cell count went from 300 to 40,000! Sick, sick, sick as a dog, I was. But, I survived. My point is that each of us may never be certain as to what specific event precipitated the ME/CFS.

    • Matthias

      April 6, 2015 at 8:21 am - Reply

      Cynthia I strongly agree. I strongly believe that searching for the “magic virus” is a major waste of time and resource.
      I strongly believe that many viruses along with other immune insults can trigger CFS.
      I agree that the key is to define the immune dysfunction then seek to correct it.

      • analogue

        April 7, 2015 at 4:24 am - Reply

        The problem is that the immune dysfunction is likely caused and perpetuated by the presence of a pathogen. If that’s the case, we’ll need to remove the pathogen in order to correct the immune dysfunction. In order to remove the pathogen we need to know what it is.

        • Rachael

          April 7, 2015 at 2:27 pm - Reply

          Will the eradication of that virus cure my hypersensitivity reactions against common environmental antigens? Will I no longer have strong adverse reactions to alcohol, aspartame, chemicals, prescription meds etc? Will I no longer have problems with my blood pressure/volume, or tachycardia? Will I suddenly be able to do aerobic exercise? I’m just wondering, if the elimination of that virus will cure my autoimmune illness?

          • analogue

            April 8, 2015 at 3:31 am -

            It’s hard to know if symptoms like that are due to permanent damage or caused by ongoing infection in specialized cells. I think that there is evidence for the latter, if you look at the success that doctors such as Dr. Chia and Dr. Montoya have had with treating these individual infections.

  • Diane P Morin

    April 5, 2015 at 10:53 pm - Reply

    I read recently that CFS has been given a new diagnostic name and a appeal to health Practitioners to make sure they understand and take it very seriously. It also mentioned CHF as a trigger. I had an MI about two years after I developed the CFS…what is your opinion regarding the correlation?

    • Cynthia

      April 5, 2015 at 11:38 pm - Reply

      Diane, I think that given certain circumstances and perhaps even a genetic predisposition toward an immune system problem, something as stressful to mind, body, and sprit as an MI could certainly be perhaps the final step toward the disease state known as ME/CFS. But I am no one in particular, only a person who has by necessity become a student of her own disease. I am a disabled RN. I have a bachelor’s degree from 1977, but my field of work was in neonatal ICU, which is very different from nursing of older children and adults, obviously. I consider nursing more of an applied science . Much of this language is beyond me, but I get the gist of most much of it. I wish you well.

      • Diane P Morin

        April 6, 2015 at 12:00 am - Reply

        Thank you, Cynthia, and I you. A great friend of mine was a neonatal nurse for almost 40 yrs. and another a nurse for 40 yrs. I love nurses! You get very little credit for what you actually, especially the nurses now, who are so over worked. Bless you!
        I did not understand a lot of the language either but enough to understand what was being explained. 🙂

  • The Walking Dead

    April 6, 2015 at 2:14 pm - Reply

    I too am a RN with this debilitating illness, I think what we have to take from this is, our immune system has, and continues to have taken a major hit. Even if its not a specific virus, but a combination of multiple viruses, clearly our immune systems are minimally functioning. This is however continual proof that we could use a immune boosting drug like Ampligen.

  • another walking dead!

    April 13, 2015 at 5:36 pm - Reply

    I am in my mid forties and have been suffering for at least 20 years. I have tried GET, which I believe has had very little impact, and my doctors have not prescribed anything else to alleviate my symptoms. I try not to go to the gp with my symptoms as I am tired of the smugness and condescension when they advise that it’s not life threatening, and that they can’t find anything and I should watch it and see how it goes!! I have pointed out that my sister suffers from myasthenia gravis, my aunt suffered from RA, and my mum had thyroid problems resulting in surgery. It doesn’t seem to be considered as relevant. For the last two years I have been out of full-time work, as I can no longer cope. The recent findings generate optimism; I hope that relief will come in my relevant lifetime. I tried using spirulina, which seemed to make a difference in my energy levels for quite a few months. it seems as though it is no longer as effective. I’ve recently increased the dosage, so I’m waiting to see how that goes.

    I wish for you all as I wish for myself – an upgrade from existing to living.

    Thanks to all who are trying to make this happen.

  • bird

    May 1, 2015 at 8:38 am - Reply

    If the fact is immune system burnout in the later years of the illness. Will it then be safe to try biological medication / immune lowering medication like Il-1 antagonists like Anakinra? Or TNFa inhibitors?


    • Cort Johnson

      May 10, 2015 at 11:37 pm - Reply

      I think that immune suppressants are being discussed and sometimes used in ME/CFS but I’m afraid I have no idea how common that is.

  • Foodsteaks

    June 2, 2015 at 8:29 pm - Reply

    This was just released today. Sounds like a pretty dramatic discovery.

  • Rachel

    January 3, 2016 at 3:47 pm - Reply

    I have ME/CFS and Fybromyalgia amongst other things, but I also have a sub-arachnoid brain cyst. Could additional fluid on the brain, such as is in a cyst like this, cause similar issues/imbalances in Cerebral Spinal Fluid that is discussed in this research?

  • Christina

    March 9, 2016 at 12:02 pm - Reply

    I have been home& bed bound with ME/CFS about 6 yrs now. I also have an arachnoid cyst on my frontal lobe and have the same concerns..My Neuro Dr basically blew me off he didn’t seem to even know what ME/CFS was nor was he interested in my explaining. Said he didn’t “think” it had anything to do with unexplained seizures that were not ones captured by eeg. I belong to several support groups & many have the same type of cysts. I hope that question is being brought up being that many of us have the cyst along with the many other things.

    Blessings to all that a treatment comes soon

  • Bird

    March 18, 2016 at 4:57 pm - Reply

    I too have an aracnoidal cyst in my brain.
    ME for 15 years, home and bedbound 8 years.

  • Mary

    September 3, 2016 at 2:58 pm - Reply

    Hi, just came across this while searching for Centers that treat CSF disorders. Could there by a connection with Lyme and other co-infections? I have been suffering with bilateral ear pressure, head pressure, and headaches for years. After seeing numerous doctors (and being treated aggressively for Lyme, co-inf.), I’m still left with these awful and often debilitating symptoms. Finally, I think I am on the right path as I had an initial consultation with a neurologist from Johns Hopkins Cerebral Fluids Center who seems to believe (I still have to get some more tests done) based on MRI scans that I have low pressure due to a skull-based csf leak(s). Once the leak(s) found, a recommendation for treatment will be given. Has anyone had (or heard) of this sort of thing before? Thank you!!

  • Karen

    May 1, 2017 at 12:05 am - Reply

    Between this study and the Gut Study, I think I have found the answers to all my questions. This has been a long time and so many different diagnosis.. Except, for can a child have this? Thru the 55 year’s of suffering I am still convinced that where it began was after my first live polio vaccine. Any thoughts on this would be greatly appreciated.

    • Cort Johnson

      May 21, 2017 at 2:55 pm - Reply

      ME/CFS does not occur nearly as often in children but it does occur.

  • Carol

    June 21, 2017 at 2:53 am - Reply

    I have included a website, that gives updates on all the latest US government studies on CFS. Dr. Lucinda Bateman, in Salt Lake City, UT In one of about a dozen doctors in the US that has patients like me as part of national research. The website also gives reports for doctors on how to diagnose and treat CFS. Also in SLC, UT, my chiropractor, Dr. Kory Braham, uses Applied Kinesiology to find nutritional and other supplements to help my CFS. He also has many other patients with CFS who see Dr. Bateman.

    So for me, Dr. Bateman is the only doctor who informs me and my other doctors about what is known about CFS, and Dr. Branham who actually treats my CFS. Wish these two could be duplicated in every city.