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Tea-Time at Simmaron I: Mady Hornig on the “Peterson Subsets”, Immune Exhaustion and New Gut Findings In ME/CFS

The Simmaron Research Foundation is out to redefine ME/CFS scientifically.  In an recent event called A Simmaron Tea, collaborators talked with patients about their recent work to propel discovery in our disease. Part 1 of our summary will review Dr. Mady Hornig’s presentation, including some early results from Columbia’s ongoing gut studies. Part 2 will summarize Dr. Konstance Knox’s study of mosquito and tick-borne pathogens in ME/CFS patients. Stay tuned!

Simmaron has collaborated with Dr. Hornig on half a dozen studies unfolding the immuological anomalies in ME/CFS. A doctor-scientist by training, she is Associate Professor of Epidemiology and Director of Translational Research at Columbia University’s Mailman School of Public Health.Simmaron Research | Scientifically Redefining ME CFS | #ShakeTheCFSstigmaSimmaron’s collaborations with Columbia on spinal fluid studies mark our signature contribution to ME/CFS research. Simmaron is continuing this research by funding a second phase of this work to compare metabolomics and proteomics in ME/CFS and MS patients.

Mady Hornig

“We now know that the same changes to the immune system that we recently reported in the blood of people with ME/CFS with long-standing disease are also present in the central nervous system,” Dr. Hornig

In her presentation, Dr. Hornig first reviewed the recent finding from the Chronic Fatigue Initiative-funded study run by the Columbia team: massive immune up regulation in short duration ME/CFS patients and immune down regulation in longer duration ME/CFS patients.  The same immune factors, interestingly enough, that were upregulated early in the illness were squashed later in the illness. One key viral fighter called IFN-y that was hugely important in early ME/CFS but significantly down regulated in later ME/CFS pointed an arrow at a process called “immune exhaustion”.

Immune Exhaustion

collaboration

The blood and spinal fluid findings matched

The first cerebrospinal fluid study using Dr. Peterson’s carefully collated samples found a similar pattern of immune system down regulation. That study (supported by CFI and Evans Foundation) included only longer duration patients.  These two studies – the first to find similar issues in these two different compartments of the body – suggested that the immune system had taken a system wide punch to the gut.

What could cause this kind of immune exhaustion?  Dr. Hornig stated it’s usually associated with chronic infections. In a scenario reminiscent of the wired and tired problem in ME/CFS, the immune system gets revved up, stays revved up and ultimately crashes.

That nice concurrence between immune findings in the spinal fluid and in the blood was encouraging, and the group is digging deeper into those CSF samples. Thus far a factor called cortisol binding globulin (CBG) has popped up in protein analyses. This intriguing factor which facilitates the transport of cortisol in the blood, has shown up in chronic fatigue syndrome before and families with certain polymorphisms in their CBG genes have increased fatigue and low blood pressure.

The Peterson Subsets

Earlier, Dr. Hornig noted Dr. Peterson’s exceptional foresight at collecting cerebrospinal fluid samples over many years and his skill at characterizing them. Now she appeared almost dumbfounded at his ability to pluck out subsets in his patients. At Dr. Peterson’s urging, the Columbia team examined the cerebrospinal fluid of what he called “classical” ME/CFS patients and “complex atypical” patients. Dr. Peterson has been talking about the “classical” set of ME/CFS patients vs other types of patients for years, but this was the first time his intuition was put to the test.

subsets ME/CFS

Finding subsets was crucial to the success of both studies

The classical patients typically present with infectious onset while ME/CFS in the atypical patients has been associated with post transfusion illness, cancers and other factors. No one before has suggested or attempted to determine if these patients differ biologically.

Dr. Peterson’s intuition that they would be different biologically proved to be correct. Columbia found dramatic differences in the CSF of classical versus atypical patients. Virtually all the immune factors tested were higher in the complex atypical vs the classical patients. The researchers are taking a deeper look at the cerebrospinal fluid in these two types of patients.

The findings also demonstrates how vital it is to tease out subsets. Without breaking patients up into early and longer duration subsets the findings of the CFI’s big immune study would have been negative.  Similarly, without excluding Peterson’s subset of  atypical patients, the cerebral spinal fluid study findings would have been insignificant. Given the size, expense and prominence of the CFI blood study, in particular, the negative results would have provided a significant impetus for the field to move away from the immune system.

Instead, there is now great interest in immune alterations in ME/CFS. The inability to ferret out biologically important subsets has undoubtedly smothered potentially important findings in ME/CFS in the past. In a short period of time the CFI investigators and Dr. Peterson have added two factors ME/CFS researchers need to consider in their studies: duration of illness and classical vs non-classical patients.

This is an example of “translational medicine” – going from the bench (lab) to the bedside (clinic) and vice-versa – at its best. It can only occur when researchers interact closely with practitioners they trust and vice-versa.

The Gut Work

gut chronic fatigue syndrome

Mady Hornig believes the gut may hold answers to ME/CFS. The preliminary gut results suggest she may be right.

Columbia’s Center for Infection and Immunity has  completed the testing of samples from 50 patients and 50 healthy controls started in the CFI study and extended in an NIH-funded study to analyze ME/CFS microbiome. They are completing analysis of the samples now.

They’re finding evidence of significant changes in the gut flora of ME/CFS patients vs healthy controls. For one, altered levels of butyrate producing bacteria have been found in the ME/CFS patients. Noting that similar differences have been found in autoimmune diseases, Dr. Hornig proposed that an autoimmune process may be fueling the symptoms in a subset of patients.

Another finding suggests substantial serotonin dysregulation may be present in ME/CFS. (Most of the serotonin in our body is found in our gut.) Dr. Hornig described serotonin as a major immune regulator. Thus far they’ve found that serotonin is more likely to be undetectable in shorter duration patients than longer duration patients, and those reduced serotonin levels are associated with increased immune activity including a very significant increase in IFN-Y – an important antiviral factor.

Tryptophan is metabolized to either serotonin or kynurenine.  If serotonin levels are low, the levels of kynurenine are likely high. Plentiful serotonin results in feelings of well-being, emotional resilience, and immune balance. High levels of kynurenine, on the other hand, have been associated with a host of neurological and neuropsychiatric disorders. Dr. Hornig has called the kynurenine pathway her favorite pathway because it’s been implicated in so many diseases.

The low serotonin findings in ME/CFS were apparently significant enough for Columbia to begin developing new tests to more accurately assess the presence of kynurenine metabolites. It appears that they’ve been successful in doing that, and we can expect more fine-tuned analyses of the role that pathway plays in ME/CFS.

In discussion afterward the presentation, Dr. Hornig said she was struggling a bit how to relay ideas of low resilience to stress in ME/CFS – some of which low serotonin levels could play a role in – without ruffling feathers.  She’s certainly not advocating the SNRI’s or other antidepressants in ME/CFS. In fact, she noted that she was sure ME/CFS patients were amongst the “treatment resistant depression” patients she’d seen when working as a psychiatrist early in her career.

The fix for the serotonin problem – if it is validated in a subset of ME/CFS patients – will clearly come from another direction. A recent review article suggested using the gut flora to affect serotonin-based brain disorders and that is probably the track Dr. Hornig will take. She said she is especially keen to look at the effects of nutraceuticals, probiotics and fecal transplants in ME/CFS.

Dr. Hornig is clearly intellectually excited by her work, but one thing that happened during her presentation indicated her strong emotional connection to it as well.  The presentation of a small quilt to her from ME/CFS patients strongly affected her and left her having to momentarily gather herself emotionally.  It was a surprisingly moving moment.

Dr. Hornig sounded confident about the direction of their research and stated that they were veSimmaron Research | Give | Donate | Scientifically Redefining ME/CFSry much looking forward to what the next few years will bring.  She said she was cautiously optimistic that the IOM and P2P reports, the positive immune study, plus the signs that the National Institute of Neurological Disorders and Stroke (NINDS) may be interested in taking ME/CFS on, indicate that a turnaround for ME/CFS funding is in store.

Help Simmaron continue to fund this pivotal work, as we seek to deepen immune findings in ME/CFS and turn them into potential treatments.

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53 Comments

  • Marion

    September 28, 2015 at 5:29 pm - Reply

    Sitting here with such an upset stomach, total fatigued and pain all over I was excited reading this article – until I got down to the part about the next few years- I have suffered with this for 22 years – and reading something that says in the next few years ( as most articles are , I see no hope of getting any relief in my day.

    • Cort Johnson

      September 28, 2015 at 7:44 pm - Reply

      Time will tell…Hopefully sooner than later. Unfortunately we need for funding in order to pick up the pace at which we can translate research findings into treatments.

      I’m encouraged by the findings of the two subsets. If separating out these subsets does indeed make a big difference then if researchers will start doing that – our progress could pick up markedly….given we have enough funding…That’s the big bugaboo. Hopefully NINDS will take us in at the NIH and funding will increase dramatically.

    • Mimi

      December 30, 2015 at 5:55 am - Reply

      Marion, some people respond to S. boulardii or other probiotics. Even people who have suffered for years. You just have to find the right one.

  • Teresa

    September 28, 2015 at 6:42 pm - Reply

    Serotonin problems make a lot of sense to me. Each time I came off the SSRIs I had massive relapses unrelated to my mood. I stay on them permanently now just in case!

  • Jennifer Rudin

    September 28, 2015 at 6:44 pm - Reply

    Where shall I research nutraceuticals and fecal transplants?
    My best results are from meditation, diet (palep/ketogenic type with a probiotic butter supplement), and acupuncture.

    I seem to have long term fibro/CFS/Lyme as well as irreversible effects of metal-on-metal hip implant
    Want to eliminate meds which no longer seem to help.

  • Jennifer Rudin

    September 28, 2015 at 6:46 pm - Reply

    Thank you for your work.

  • John

    September 28, 2015 at 7:16 pm - Reply

    While I appreciate the approach the CII is taking, I was just thinking of how absolutely sick it makes me to hear all this talk of nutraceuticals, probiotics, etc. as potential treatments for ME/CFS. We need heavy duty immune modulators, not goddamn vitamins. With that said, kefir and other probiotics do seem to ‘cool down’ my brain a bit and ease my anxiety some, but that’s all they do, they do nothing whatsoever to fix the underlying disease process which is what patients truly need. Hopefully the Norway rituximab and cyclophosphamide studies will finally open up this avenue to patients in a much broader fashion.

    • Cort Johnson

      September 28, 2015 at 7:40 pm - Reply

      I understand what you’re saying John – probiotics? but I disagree for two reasons. .

      These people are pretty smart! I don’t think they’re aiming at a small amount of improvement. I don’t think they would be spending several million dollars on stuidies if they didn’t think the gut was a major issue with possibly profound ramifications for ME/CFS. Dr. Hornig suggested that autoimmunity that may be present in ME/CFS – which Rituximab appears to be fighting – could be driven by issues in the gut.

      I also don’t think we have a clue how effective targeted probiotics and other forms of gut manipulation can be. I don’t think they’re referring to a probiotic you can pick up off the shelf. I think they’re referring to probiotics and other means of manipulation that can specifically target and alter kind of gut flora issues found in ME/CFS patients. The fact that you do get some relief from ordinary kefir might just be the tip of the iceberg.

      It’s also good to find what appears to another quite anomalous finding. These findings continue to assist us in legitimizing ME/CFS.

      • Stephanie Stultz

        September 29, 2015 at 1:04 pm - Reply

        I have often related my experience with raising serotonin levels, something I was very much interested in the first years of my illness, now going on 14 years. Some people thing taking a ‘supplement’ isn’t effective? I took 5-HTP @ 50 mg. a day for about a year and decided I was going to have my serotonin levels checked. It was 6 (SIX) TIMES the high range number. I was astonished and so was my doctor. I didn’t seem to be having any side effects, though, even at that high of a blood level. I tapered off the dose and stopped taking 5-HTP, but I’ve thought about starting it again in a much smaller dose.

      • Karen

        September 30, 2015 at 2:56 am - Reply

        My son is a physical therapist and attended an weekend presentation on the gut. The doctor who presented said that 90% of our illness begins in the gut. I’m a believer. I had gut problems as a young child, and still have them as an adult. I had mono as a teen, and hypothyroid issues now, both of which are auto-immune disorders. If I don’t take a probiotic, I’m in trouble. My daughter had gut spasms as a child, had a virus release from her gut after the birth of a baby and had post partum cardiomyopathy. Good health begins with a healthy gut.

      • John

        October 6, 2015 at 7:16 pm - Reply

        I just think it’s the opposite, at least for some patients- that an autoimmune reaction or some other pathology reduces blood flow which then affects the gut microbiota, ie starves the good bacteria of oxygen and lets the bad bacteria take over. Reduced blood flow would also explain cognitive difficulties, heat/cold intolerance, reduced ability to either oxygenate muscles and/or remove lactate, etc. So I do think the gut plays a major role I just don’t see how it would be causative and therefore focusing on ‘fixing’ the gut is akin to putting duct tape on a leaky pipe. Again though, without talking about specific subtypes it’s basically a lost cause trying to put potentially incompatible pathologies into one unifying theory of disease causation.

        • Katherine

          October 7, 2015 at 12:40 am - Reply

          Which came first, the chicken or the egg. You bring up some excellent points. The thing is, it does seem like they are going over ground that my chiropractor explained to me 15 years ago when he was telling me all this stuff that the MDS are only now starting to pay attention to. It IS frustrating. It seems like people are running around touting new “discoveries” that we’ve all known about for years. They need to do some clinical trials with treatments that work on similar illnesses and see if they work on us! For example HSCT autologous stem cell transplants. They blast you with chemo, completely shutting down the immune system. But first, they harvest and purify some of your own bone marrow stem cells. Then they put the clean stem cells back in your body. Essentially the chemo kills everything – your immune cells and ALL THE VIRUSES AND OTHER PATHOGENS lurking there. Then they give you a brand new immune system. It is being used very successfully with what appears to be permanent remission in patients with MS, CIPD, Lupus, RA, Chron’s, etc. People in wheelchairs get up and walk. People who were approaching death are planning their weddings. I know, because I met those people. I was there. Why can’t we just have a clinical trial for HSCT stem cell transplants. I would do that without any hesitation whatsoever. How can we make that happen?

          • Cort Johnson

            October 9, 2015 at 4:50 pm -

            I agree that it can take soooo long for ideas and techniques to show up in research studies….

    • EffiBriest

      September 29, 2015 at 1:48 pm - Reply

      Read Dr Perlmutter’s books before you dismiss the potential of probiotics and even fecal transplant to treat these disorders.Your immune system is in your gut, so that’s the place to target.

    • zenmom

      October 17, 2015 at 6:17 pm - Reply

      John, I don’t know about other doctors, but here’s my own experience. For the last 3 or 4 years I’ve been a patient of Dr Nancy Klimas down in Miami (and more recently, Dr Irma Rey at the same clinic, since Dr Klimas stopped seeing patients directly). Dr Klimas had me on Imunovir, which is an immune modulator available only by prescription. Also apparently only available from certain doctors with the proper permits. With that Rx, I ordered it from a pharmacy in Canada, which imported it from Ireland. I took several courses of 3 months each. Dr Klimas, and later Dr Rey, followed my immune markers closely via blood tests, and then had me discontinue it when the lab results improved up to a certain level. Dr Rey said if I had continued taking it, there was a risk that my immune system would go too far in the other direction. I would consider that a fairly “heavy duty” immune modulator.

      In the past several years, I’ve improved somewhat due to two different areas of treatment, both overseen by a local neurologist who specializes in sleep issues and is familiar with CFS/ME issues. First, I *finally* got a full-tilt overnight-in-a-sleep-lab sleep study done. I think the neurologist had to do some arguing with my insurance company to get them to cover it; health insurance companies are not covering as many full sleep studies as they used to. It was useful to him to see my overnight sleep patterns. He Rx’s gabapentin for leg spasms; I have them often as I start to fall asleep, but he said that even ones I’m not aware of during the night can interrupt deep sleep and make sleep less effective. I’ve also started taking melatonin at night, and a small amount of another (liquid) Rx, that helps me get to sleep. This all has made a huge difference in allowing me to sleep through the night, and wake up feeling less run over. I still need 9-10 hours of sleep per night (or more), but at least I’m not always feeling trashed every morning when I wake up. And once in awhile, I actually feel *sleepy* around bedtime, which had not happened for years and years.

      The other *huge* change was another Rx, prescribed by the same neurologist. Once my sleep got straightened out, at least as much as it was going to, I told him I was sleeping through the night now, but I was still groggy all day long and couldn’t concentrate on anything. He gave me a sample of an Rx called Nuvigil that, according to its website, “is used to treat excessive sleepiness”. Here’s the backstory: First there was an Rx called Provigil. Then the patent expired and the generic for that became available. So the pharma company came out with a tweaked version, and called it Nuvigil. The dr gave me a couple sample cards of Nuvigil with instructions on how much to take, and when. It seemed to help my alertness. Then he Rx’d the generic for Provigil, which is modafinil. I took it for awhile. It didn’t help much. He talked about release rates and dosage profiles, and all the reasons why that generic should work as well as the brand-name product. I said, yeah, but it doesn’t. So after we went around that a couple of times, he Rx’d the brand-name product Nuvigil. To get Nuvigil covered through my insurance once more took a lot of paperwork on his part, but eventually the insurance company approved it. Which was good. Because the price to me *with* insurance coverage is still $275/month, but without coverage it would have been anywhere from $575 to $650 per month. Now, I know some other meds are worse (some cancer treatments, for example), but I’m typical of most CFS/ME patients and am getting by on a very modest social security disability benefit, and that higher price would have taken most of my monthly income! (Note: I was told by Dr Rey that generic versions of drugs have a fairly wide range of how much of the active ingredient is in each pill. The FDA officially says the generic must contain the same ingredient and the same amount as the brand-name version, but apparently the real requirement is “the FDA only requires that you get 80% to 125% of the drug into your bloodstream from a generic medication compared to the original drug.” And that’s enough difference to maybe explain why the generic didn’t work for me.) Anyway, Nuvigil has made a huge difference in my quality of life. I still have to be very careful about my “energy envelope”, I still only have about 2-3 hours a day average in which I can function, and otherwise have to switch to lower-key activities or resting, but for awhile in the middle of the day I actually have a brain again, and feel more like myself than like a zombie. My friends have noticed the difference too.

      I try to take care of my gut microflora by including yogurt, kombucha, and various other active-culture foods in my diet, but I don’t consider that a course of treatment, just general good practice.

      Regards, from Salem, Massachusetts
      where we celebrate the entire month of Halloween

      P.S. Oh, I tried a round of autologous stem cell treatment about a year ago. Didn’t make a bit of difference in how I felt (except my wallet was quite a bit lighter). Oh well.

      • Cort Johnson

        October 17, 2015 at 7:14 pm - Reply

        Nuvigil – interesting! Thanks for passing that along.

      • Katherine

        October 18, 2015 at 2:58 am - Reply

        You say you tried autologous stem cell treatment. Did you have chemotherapy with that? Were your stem cells harvested from your bone marrow? Because the clinics that just do ay old stem cells without the chemo are pretty much recognized as ineffective. The chemotherapy is what makes you well. The stem cell transplant after chemotherapy gives you back your immune system so you can stay alive. The procedure I am talking about costs over $100K and is covered by many insurance companies. It is being trialed at Chicago Northwestern (Dr. Burt) and in countries around the world.

  • Carol Olsen

    September 28, 2015 at 9:15 pm - Reply

    Thanks, Cort. Between Dr. Hornig and Dr. Peterson, progress seems to be happening. One of these days!

  • Jill Neimark

    September 29, 2015 at 12:27 am - Reply

    Good work by Mady Hornig–really nice to read about.
    They might want to follow Rafi Ahmed’s work on the PD1 antibody blockade. He’s at Emory–probable genius–discovered tcell memory in the 1990’s, I believe–became world famous for it–now he is working on this–to revive exhausted immune systems.

    • Cort Johnson

      September 29, 2015 at 2:28 am - Reply

      Thanks for the tip!

    • Elaine C

      September 29, 2015 at 12:21 pm - Reply

      “Soon after joining the faculty at UCLA, however, he had realized ‘the really interesting questions are how our bodies attain and maintain immunological memory, regardless of the virus involved.’ ” Yes! A researcher who sees the big picture. For more information on Rafi Ahmed see http://med.emory.edu/gamechangers/researchers/ahmed/bio.html
      Thanks for alerting us to his work.

  • Gijs

    September 29, 2015 at 2:35 pm - Reply

    I know that many people who have had gut problems before they were getting ME/CFS. It is a very interessting study. Lipkin and Hornig know much more then they can say at this point. Also gutproblems with bacteria like LPS can produce problems with the nervoussytem.

  • Deborah

    September 29, 2015 at 3:22 pm - Reply

    Thank you, Thank you, Thank you! Finally a group I fit into and explains so much. Cancer 1/91 just started feeling like myself again after having 8 weeks of Summer break of with the kids and BOOM in 9/11 I am sicker flu like symptoms and dead tired then I have ever felt before. Only my tenacity, and that I have in Full on B!#3h Butt Loads, till I rag the doctors for my diagnosis “it looks like MS, but no brain lesions, all your test are normal except one you have high inflammation in your body of unknown origin” Fibromyalgia. IBS was the next big shoe to drop, although I have always had irregular bowels, not going for days, now I switched between diarrhea/constipation. This took 9 years and I was doing great on diet, vitamins and minerals only within valerian root to manage spasms and melatonin for sleep. More water, fruit, good acidophilus and yogurts. Till Cancer 2 in 99, with the Staphylococcus infection from the hospital that hung on for 7 months. Then my symptoms fell like dominoes a new one, and a new one … Till I had a total physical and nervous breakdown in 2005 and couldn’t go on due to exhaustion, poor doctoring for too many years “Fibromyalgia is a psychosomatic illness” in other words you are nuts and me “fighting it” instead of taking care of and balancing my life. I was officially disabled 2007. But when I tell doctors Cancer, Cervical, then Uterine, started it all, they glaze over, because not only does my “dis-ease” not perfectly fit the models but overlap, but neither does said origin till maybe now!

    • Cort Johnson

      September 29, 2015 at 3:27 pm - Reply

      What an interesting history Deborah. I was looking into immune exhaustion and one of the things that shows in the literature is a focus on immune exhaustion and cancer…

      I would love to do a tested for MS poll – I’ll bet alot of us have been tested for it..:)

  • Daphne Oxley

    September 29, 2015 at 11:13 pm - Reply

    Very interesting. Thank you for your work.

  • Matt

    September 30, 2015 at 1:50 am - Reply

    “The classical patients typically present with infectious onset while ME/CFS in the atypical patients has been associated with post transfusion illness, cancers and other factors.”

    Hi Cort,

    Do you have any more information on how Dr. Peterson determines if a patient is “classical” or “atypical?” From the information given, I don’t really fit either category. I had symptoms begin suddenly but without a distinct infection or other contributing factor. I did have a series of flu like illnesses, and I became sicker and sicker with each one. So, I guess I had a gradual onset that began suddenly if that makes sense.

    • Cort Johnson

      September 30, 2015 at 1:54 am - Reply

      I don’t but I will try to find out. I don’t fit either category either. In retrospect I did have a pretty rapid onset – it was during a quarter at college – I started off strong as could be and stayed strong for quite awhile but by the end was in bad shape – but no flu-like symptoms at all. That was why I was so intrigued to learn that infectious mononucleosis has two types of onsets – a rapid flu-like onset and a more gradual onset typified by muscle pain and fatigue which is what I was experiencing. Plus for ten years I had sore throats….It makes me wonder.

      • Katherine

        November 19, 2015 at 3:55 pm - Reply

        Cort, I fit your model. Growing up had chronic upper respiratory infections but other than that no “trigger” that I know of. One of those must have been mono since i have EBV which is chronically activated, but we were not the kind of family that went to the doctor every time we got sick……if i had a diagnosis of mono i don’t remember it. I do remember a tick bite in my teens and at one point had to have gamma globulin shots as a teen because of exposure to hepatitis. So possibly could have been infected by blood products, but i did not become chronically ill right away.

        if I had a trigger it may have been the birth of my second child; not long after that diagnosed with Hashimoto’s thyroiditis, anemia, and cervical cancer in situ. (Well it was probably about 3 years after his birth that i was diagnosed, but symptoms began earlier than that). Hormonal factors? I think the endocrine system in most of us is all hosed up – my testosterone is messed up too – but I think that’s a symptom of a larger issue (CNS malfunction), and not the root cause. But it does contribute to a lot of our difficult symptoms.

  • Matthias

    September 30, 2015 at 5:45 am - Reply

    The gut? Nutraceuticals? Sorry to be a dissenting voice but I don’t buy it. I’d put money on Fluge et al, or people looking at the brain / CNS. Would I care if I was wrong? No, as long as someone finally nails the cause of this disease!!! Time keeps ticking…

  • Katherine Autry

    October 1, 2015 at 5:27 am - Reply

    Cort, thank you, thank you, thank you for this site. I can’t tell you how much this article made my day – and all the comments after.

    • Deborah

      October 1, 2015 at 4:48 pm - Reply

      I agree Katherine, this site, has opened my world to many, many, great resources and rebuffs to bad medical care from Doctors and Nurse Practitioners who not a clue to what I have, nor of what I speak. If you don’t know, don’t be as my husband says a part changer. That’s a back yard mechanic who keeps replacing parts on a car till the car runs right. I can’t chance my body to Doctors who want to try drugs till we get the right response. Especially when I go in there and you aren’t even sure what specialist is supposed to handle my disease, Rheumolotologist, which haven’t seen people with Fibromyalgia in Atlanta for 15 years. So,trust issues much, or I have been given bad medicine too many times.

  • Susan

    October 3, 2015 at 7:22 pm - Reply

    I’ve just found d you web sight and I’m so glad. I’ve also suffered for 20+ yrs. I’m so thankful there’s research being done! And that Dr. Cort had brought it all together….

    • Cort Johnson

      October 5, 2015 at 2:18 pm - Reply

      Thanks – just a patient – not a doctor – although I appreciate the upgrade and your nice words.

  • Helen

    October 5, 2015 at 1:56 am - Reply

    Hmm, interesting. I would say that (with the benefit of hindsight, 31 years on from my ME diagnosis) the only things that have given me clear and dramatic improvement are; following a strict anti candida diet (back in the day :)); taking low doses of a tricyclic antidepressant (Prothiaden); antibiotics that worked on my stomach; and high doses of antivirals. My major symptoms have always been severe pain everywhere, disordered sleep, horrendous stomach problems, hormonal imbalances, thyroid abnormalities (which can never be treated apparently) and all things cognitive and neurological (panic attacks, inability to read words on a page, headaches, depression, Alzheimer-like confusion, concentration and memory problems). The problem of course is that, with the exception of Prothiaden, none of those things are realistically sustainable long term. Antibiotics need to be used sparingly, high dose antivirals are prohibitively expensive when taken for years, and restricted diets just aren’t sustainable over lifetimes. I have always told doctors that if I could solve my stomach problems, I think I would be cured, so dramatic are the results of anything targeting my stomach. I’ve wondered for a very long time if faecal transplants could be the answer, because anything that helps my stomach always brings me clear universal relief, including my brain symptoms, and returns my energy levels to normal. So all this research is very interesting, but…. I feel like I’ve been reading similar stuff for so, so, sooooooo long, and the fact of the matter is none of it is ever available, either because the research never goes anywhere that translates into availability, or because it’s geographically and economically not do-able for me. I suspect that there are many like me that got sick in the 80s epidemics that feel this way 30 plus years on. My life was altered irrevocably by this illness. I got sick at 23 and life as I knew it was over. Like most, I’ve endured losses, persecution and discrimination which have meant that I’ve had to somehow live my life post-life-changing-illness in my prime with very little support and in fear a lot of the time. Research has not advanced treatment significantly. I’m still boxing on alone with it. So you’ll have to forgive me for reading articles like these and thinking not much more than, hmmm, interesting, but nothing new or exciting here really, and almost certainly of no use to me anytime in the near future. I don’t mean to be negative or downplay the significance of their work, but that is the honest truth from my perspective. I read stuff like this and the words Groundhog Day spring to mind.

    • Cort Johnson

      October 5, 2015 at 2:17 pm - Reply

      That’s only true if you believe that the current research will lead to the treatments of the past – but why would it? Why would a more explicit understanding of the gut and the specific factors that have gone wrong lead to using the same old probiotics that you took in the past. There’s a huge amount of interest in the gut in many diseases and circles now. I’ve got to think that that interest will translate into more effective treatments.

      Check this thread out – the Army has given Harvard $50 million to develop super probiotics! That’s a lot of money! This is serious stuff.
      I know your wait has been long but given your gut problems – this might actually turn up something.

      Not that it’s going to happen tomorrow! (Unfortunately…)

  • Sandra

    October 5, 2015 at 9:15 am - Reply

    Some thoughts on the last few paragraphs:

    “she noted that she was sure ME/CFS patients were amongst the “treatment resistant depression” patients she’d seen when working as a psychiatrist early in her career”

    I wonder about this. Physicians who have seen a lot of ME/CFS patients often comment that the clinical presentation in depression vs ME/CFS is in fact quite different. ME/CFS patients do not have the anhedonia, self-reproach and lack of motivation typical for depression. With ME/CFS, the patients usually are still very motivated, can still enjoy the activities they can manage (though these are often extremely limited) and they do not have self-destructive internal dialogue.

    As one expert has put it, it can often be quite easy to distinguish ME/CFS from depression: just ask the patient what he/she would do if they got well tomorrow. A patient with depression will typically not really feel up to doing anything, whereas the ME/CFS patient will have long lists of things they are longing to do!

    (Also, of course, there are the immunological symptoms like sore throat, swollen lymph nodes, sometimes fever, susceptibility to infection as well as the common infectious onset, which differ between the two patient groups.)

    And a comment about this:

    “Dr. Hornig said she was struggling a bit how to relay ideas of low resilience to stress in ME/CFS”

    I have lately been thinking about ME/CFS patients ability to handle stress. I would say that many ME/CFS patients are having to deal with stressful situations on an extreme level, and are managing this well. As I think Dr Lucinda Bateman once commented, ME/CFS patients often develop quite extraordinary coping skills. For example, many patients are in very dire situations financially; many rely on elderly parents for daily help and have no idea how to manage when this is not sustainable anymore; many are too ill to get to a doctor. Many are dealing with social isolation in a degree which would be very tough even on healthy people. And many ME/CFS patients know there is no way they could attend an ER, since that would cause severe deterioration which might then be irreversible – meaning, these patients have no safety net at all should complications or new medical problems arise. In all of this, many patients still manage to calm themselves, find serenity and live in as constructive a way as possible. So I have been reflecting on whether ME/CFS patients actually have a problem with dealing with stress, or if it might be quite the opposite, that many of them are unusually good at dealing with stressful situations!

    • Cort Johnson

      October 5, 2015 at 2:04 pm - Reply

      I agree that most people with ME/CFS are in the midst of extroardinary stress simply by having it and many have evolved extraordinary coping skills in order to do so. Yes indeed.

      Actually with regards to stress I think she meant it in a manner other than coping, ,though. She remarked on the low resilience to stress in response to a patients story who, if I remember correctly, prior to getting ME/CFS had a high level job that involved plenty of stress that he was not bothered by but after ME/CFS every relapse had been preceded by some stressful event. She included in the idea of stress – physical exercise and infections – as well. You noted that even going to an ER could be devastating. That’s what I think she had in mind when she talked about a low resilience regarding stress.

      For me I find myself getting rocked physiologically, however, by small incidents that didn’t used to bother me at all. I think that’s probably pretty commonplace. I have a decidedly low physiological resilience to stress – and that creates psychological stress (worries and anxieties) as well.

      • Susan

        October 5, 2015 at 6:41 pm - Reply

        I not only have a difficult time handling difficult stressors any emotions good or bad will activate an episode. I feel doomed most of the time. My mind says but my body screams no! Lol

        • Katherine Autry

          October 5, 2015 at 10:44 pm - Reply

          I appreciate all of these observations. From my own experience, I think I did lack resilience for many years and stress caused a lot of damage., and especially damaged my immune system along with whatever bugs were passing through at the time. On the other hand, having this illness has taught me a lot. I’ve studied a lot, but also living with this has been a lesson in humility and patience and all sorts of qualities I did not possess in vast abundance before I was ill! I’ve learned some coping skills. Had to. I’ve grown more resilient and more serene, even though I have also become much more debilitated.

    • Cort Johnson

      October 5, 2015 at 2:10 pm - Reply

      I don’t understand your question regarding this comment.

      “she noted that she was sure ME/CFS patients were amongst the “treatment resistant depression” patients she’d seen when working as a psychiatrist early in her career”

      She noted that they were different – as you suggest she might? It’s possible she didn’t know about ME/CFS at the time ? Since she began working as a psychiatrist (served her residency) in the late 80’s I wouldn’t be surprised if she didn’t know much about it. Most doctors today still don’t know much about it and I imagine the percentage of psychiatrists who are knowledgeable is very low.

  • judy wickert

    October 6, 2015 at 9:17 pm - Reply

    TRY COLLAGEN PEPTIDES, LD COLOSTRUM, RESTORE FOR HEALTH….ALL HELP HEL GUT AND THUS THE IMMUNE SYSTEM.

  • Catherine

    November 16, 2015 at 10:39 pm - Reply

    It was by fluke that I discovered this site and am so grateful. I was actually searching any studies connecting telomere shortening and CFS because of a product recommended to me claiming to slow rate of telomere shortening, and found this study, and comments. I have been sick for 28 years, can remember the day. Virus, glands, sore throat, didn’t go away. Felt like mono which I’d had as a teen. It became a terrifying illness with severe memory issues, (at one point I didn’t feel safe driving as I would forget what the stoplights meant), visual disturbances like looking through a camera lense, trails, sleep issues, tinnitus, the severe debilitating fatigue, unending muscle pain. Did anyone have kidney issues? After much frustration dealing with doctors and “specialists” (a rheumatologist who arrogantly told me that the woman outside his window on the street was sicker than I was), a specialist in internal medicine who had ME/CFS herself diagnosed me. Her practice was entirely focused on the disease and she was featured in a documentary by David Suzuki on CFS. She had noted a “left-sidedness” in many cases, and treated me for a chronic kidney inflammation in the left kidney, the pain from which I had assumed was just part of the usual aches and pains of CFS. Over the years I have had flare-ups of kidney inflammation, pneumonia twice, left lung, lumpectomy, lymphectomy left side, chronically swollen glands, also left side. A severe reaction to poison ivy causing a huge septic blister which over 2 weeks became necrotic after no response to antibiotics and allergic reaction to such. It was surprisingly a homeopathic remedy which began the healing process almost overnight, fortunately, as the next step was surgery. I am now experiencing yet another kidney issue and it appears I have 2nd stage kidney disease, symptomatically behaving like stage 3. Because my bloodwork is always showing lows and highs, doctors tend to treat this as my “norm”, including the blood results around the kidney, and follow-up. Has anyone else experienced issues with the kidney? At this time my biggest concern is around my youngest child, now at university, the only one of my 4 kids born after development of the illness, and who has also had similar issues including 3 months of CFS-like fatigue, 4 years later mono, now pneumonia and more fatigue.

    • Katherine

      November 19, 2015 at 3:40 pm - Reply

      Hi Catherine,

      I’m so sorry to hear about your difficult experiences which unfortunately are so typical for most of us in terms of bewildering and frightening symptoms and arrogant dismissive doctors. 🙁 I’m glad you found a good one! I had not noticed the left-sided thing but will be paying more attention to that. Not aware of any kidney issues in my case, but I have had elevated calcium in my blood work? I feel for you because I too have a child who appears to be at significant risk. She is 29 and while does not have diagnosis of CFS or mono she does have chronic health issues, many of which are very familiar. 🙁 Dr Montoya believes that CFS is contagious (and of course it would be if it is of viral origin, aka EBV) – especially in utero, so our children are likely at risk of developing the disease as well. I worry about both of mine.

  • NITA PETTIET

    November 30, 2015 at 3:06 am - Reply

    Uh, what the heck is “fecal transplant”?!!!!!! I think I’m gonna’ pass on that one. lol

    • Cort Johnson

      November 30, 2015 at 3:44 pm - Reply

      :)…..You may change your mind!

      It is just what it sounds like but it’s apparently a very effective way of altering your gut flora. It’s pretty experimental at this point though.

  • Victoria Harvey

    February 1, 2016 at 9:16 am - Reply

    the work on gut flora is fantastic and i think the way to a cure. I have had ME/ CFS for 17 years. i have had endless CBT and therapy and management but it has not helped. Digestion makes a huge difference, i cant eat lentils. potatoes, rice, bread. onions, spices, eggs without making the ME much worse. Also bizarrely probioticis made me worse. Tryptophan and niacin supplements helped me hugely. Stress seems to knock me down far more than makes sense. I am very aware that there is a huge difference in my illness to those who have had ME fro 3 years and then got better. I wish I had money to donate. this gives me hope.

  • Deborah Waroff

    February 5, 2016 at 6:44 am - Reply

    I’ve read up a bit on fecal transplant, It is enormously successful in curing hospital -transmitted C. Difficile, which has been very difficult to cure even with masses of antibiotics. The difficult part can be finding a suitable donor — someone who has not taken antibiotics that disrupted their gut biome. I also know of scientists who are trying to grow suitable assortments of useful bacteria under lab conditions Last I heard Mass General in Boston was licensed to administer fecal transplants; I don’t know if this perhaps may be limited to C. Difficile conditions again.I believe other institutions have become licensed, but I am not sure which.

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