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Could Chronic Fatigue Syndrome (ME/CFS) Be a Chronic Form of Sepsis?

“In this monograph I would like to explore the concept of neuro-immune fatigue as a metabolic illness resulting from a series of events beginning with an infection, toxic exposure or neurologic injury.” Dr. David Bell, 2007

This is one of a series of blogs highlighting hypotheses mostly written by doctors or other professionals with ME/CFS, or in this case, doctors who have cared for them. The hypothesis examined in this case: Dr. Bell’s idea, produced in his monograph, “Cellular Hypoxia and Neuro-immune Fatigue”, that chronic fatigue syndrome (ME/CFS) could be a kind of “slow sepsis”.

Bell’s “Cellular Hypoxia” book was published in 2007, long before he was probably acquainted with Dr. Naviaux’s and others’ work and before the recent explosion of interest in cellular energy production in ME/CFS. Naviaux and others would probably smile, though, at Bell’s prediction that with ME/CFS and other diseases, “we may be witnessing the emergence of the next era of medicine: the diagnosis and treatment of cellular metabolic diseases”.

Sepsis is a life-threatening response to infection or trauma that can lead to tissue damage, organ failure, and death. In some ways, sepsis sounds similar to autoimmunity. For reasons the medical profession does not understand, sepsis begins when the immune system resets itself, stops fighting pathogens, and turns on the body.

The results are often devastating. The near complete body breakdown that results makes sepsis the most expensive disease hospitals treat.  Forty percent of patients with severe sepsis do not survive.

Chronic Fatigue Syndrome (ME/CFS) – A Mild but Chronic State of Septic Shock?

ME/CFS is obviously not sepsis, but it does share some interesting characteristics.  With his “cellular hypoxia” monograph published in 2007, Dr. David Bell suggested that people with ME/CFS may exist in a “mild, but chronic state of septic shock”. Bell came to this conclusion after finding that sepsis and ME/CFS produces what he believed is a similar kind of oxygen dysfunction. In sepsis and in ME/CFS, Dr. Bell notes that oxygen is actually abundant: it’s abundant in the air, the lungs and the blood of ME/CFS patients, but it’s just not getting taken up by the tissues.

Bell reports that in septic shock, the following events occur (note the last one):

  • a serious infection occurs which –
  • results in the production of cytokines which –
  • increases nitric oxide levels which then –
  • interfere with the production of cellular energy.

Bell noted that when nitric oxide blocks the flow of oxygen in severe septic shock, a patient can still die despite doctors giving him/her as much blood and oxygen as they need.

Bell suggests a similar process to sepsis occurs more gradually in ME/CFS. First, an initiating infection or toxic exposure triggers the immune system to produce pro-inflammatory cytokines and nitric oxide (NO). From there, NO increases peroxynitrite and superoxide (Martin Pall’s hypothesis), which causes oxidative stress and interferes with mitochondrial function.

Ultimately, the cell becomes hypoxic (oxygen-starved), and neuropathies and autoimmune and other problems develop.

The idea that impaired oxygen intake might be limiting energy production has gained some currency since Bell wrote his monograph.  Vermoulen’s exercise studies suggest that impaired oxygen intake, not mitochondrial problems, is the key issue in energy generation. The early stages of Ron Davis’s collaboration with an San Jose State University bio-engineer suggest that the red blood cells may have difficulty getting to the tissues. Other researchers have found autoantibodies to receptors that open and close the blood vessels in a subset of ME/CFS patients.

Last year, Chris Armstrong in, The “Starvation” Disease? Metabolomics Meets Chronic Fatigue Syndrome Down Under“, took the sepsis/ME/CFS notion one step further when he noted that many of the metabolomic anomalies (reduced amino acids, reduced lipids and increased glucose levels) found in ME/CFS are also found in sepsis and starvation.

Remarking that during sepsis, immune cells rely entirely on glycolysis to proliferate, Armstrong speculated, much as Bell did years earlier, that an infection or autoimmune process might have triggered a sepsis-like condition which lead to a state of chronic metabolic starvation.

A last tie to sepsis is an incidental one.  Ron Davis and Ron Tompkins of the Open Medicine Foundation worked on sepsis together. Based on his work there, Davis has said ME/CFS could be a kind of atypical sepsis.

Two Vascular Diseases?

blood vessels

Blood vessel damage could play a central role in both sepsis and ME/CFS

Bell noted that a vasculopathy – inflammation of the blood vessels – was the first symptom (reddened cheeks) he noticed in ME/CFS.  (That suggested to him that a parvovirus may have swept through his area.)

Cardiovascular issues could be central in both diseases. Perhaps the most interesting possible intersection between sepsis and ME/CFS occurs in the blood vessels – specifically the small blood vessels.

Recently an NIH Panel redefined sepsis as: “severe endothelial (blood vessel) dysfunction syndrome in response to intravascular and extravascular infections causing reversible or irreversible injury to the microcirculation responsible for multiple organ failure”; i.e. at its heart, sepsis is a small blood vessel disease caused by a pathogen attack – which is complicated by the immune storms that follow.

Sepsis has also been called a “malignant intravascular inflammation” characterized by excessive coagulation which blocks blood flows to the small blood vessels, reducing blood volume and lowering blood pressure.

Indeed, as Bell points out several times in his monograph, vascular issues show up again and again in ME/CFS, POTS, orthostatic intolerance and similar, related diseases.

Blood Pressure

Altered blood pressure is another sign of cardiovascular issues in both diseases. A sudden drop in blood pressure associated with an infection is an indication that sepsis has begun.

Blood pressure regulation problems are found in ME/CFS but anecdotal reports suggest that declines in blood pressure may be common as well.  Bell writes that most, but not all, people with ME/CFS have low blood pressure – something that the medical profession has little interest in – unless you’re in the ICU.  It’s ironic, Bell notes, that an ME/CFS patient with a blood pressure 75/40 will get little notice but put someone with that blood pressure in an intensive care unit and the sirens will go off.

Blood Volume

Low blood volume is common in sepsis and great efforts are made to increase it. Low blood volume, of course, is very common in ME/CFS as well. Sometimes blood volume is so low in ME/CFS as to stagger the mind, yet it’s received little attention.

Increasing blood volume can, of course, be helpful in ME/CFS, but is not as helpful as one would think, given the low blood volumes found. (Could microcirculatory problems be to blame?)

Blood Flows

In sepsis, blood flows in the microcirculation become so low as to damage the organs. That doesn’t appear to happen in ME/CFS, but even back in 2007, Bell was able to point out studies showing reduced blood flows to the brain and muscles was present.

Pathogen Damage

Sepsis was long thought to result from an overwhelming immune response to an infection but that’s no longer thought to be true. In 2010, however, that changed. The Working Group on Blood Systems Response to Sepsis, convened by the NIH’s National Heart Lung and Blood Institute (NHLBI), concluded that a cytokine cascade was not, as had been previously believed, the main culprit. The real issue in sepsis, they asserted, is damage to the blood vessels caused by an uncontrolled infection.

The damage is then exacerbated by many inflammatory factors (including Dr. Bell’s nitric oxide metabolites).  A period of reduced immune activation or “immuno-paralysis” (caused by an overactive anti-inflammatory response/immune exhaustion) that follows then sets the stage for the reactivation of latent viruses such as EBV, HSV-1 and others which amplify the damage.

The immune response is still recognized to be important, particularly in the later stages of the disease, but the infections themselves and the damage they do mayt be the key factor.

That’s an intriguing finding given that the biggest factor in determining who gets ME/CFS and who doesn’t after an infection appears to be the severity of the initial infection. Could a severe infection kick off a low-grade, chronic type of sepsis in ME/CFS?

It’s possible that the difficulty NK cells – and probably T-cells – have in killing off pathogens in ME/CFS might just give those pathogens enough time to damage the blood vessels.  Or, perhaps in other cases, an autoimmune process is sparked which does the same. (An autoimmune process appears to occur in some types of POTS).

Post-Sepsis Syndrome (PSS)

Interestingly, sepsis appears to be another potential trigger for chronic fatigue syndrome (ME/CFS). Post-sepsis syndrome (PSS) – a condition occurring in about 50% of sepsis survivors – indicates that surviving sepsis – perhaps like surviving the infection, injury or whatever that appears to trigger the onset of ME/CFS – is often not nearly the end of the story.

Extreme fatigue, problems with cognition, muscle and joint pains, insomnia and other sleep problems, that can last months or even years are common outcomes of sepsis.  In fact, a sepsis trust has produced a support document specifically for post-sepsis patients experiencing “chronic fatigue“.

The medical profession has been content thus far to simply to document the extent of PSS – with little attempt to understand or treat it.  The causes of the fatigue and chronic pain in PSS are completely unknown. This is despite the fact that several studies have made clear that PSS is a significant and enduring problem: statistics suggest that about 250,000 people a year come down with PSS.

The disease is clearly pathophysiological, but the only help The Sepsis Alliance could provide for the many chronically ill survivors was to get emotional and psychological support (counseling, cognitive behavioral therapy or neuropsychiatric assessment) or physical therapies.

Treatment

Sepsis is also confusing to treat. The first line of defense is a hearty dose of antivirals, fluid support, etc.  From there it gets trickier.  People with sepsis may have a pro-inflammatory phase followed by immune suppression (or both may be occurring at the same time).  (Could ME/CFS be a kind of drawn-out sepsis with a longer pro-inflammatory phase followed by immune exhaustion?)

Researchers and doctors focused on reducing pro-inflammatory responses, but drug trials targeting the pro-inflammatory response have been ineffective.  Now, researchers are targeting immune checkpoints in hopes of unleashing the power of the innate immune system.

Check out a more technical take on sepsis and ME/CFS which brings Systemic Inflammatory Response Syndrome (SIRS) into the equation: IS SIRS, CARS, MARS – AND NOW PICS – CAUSING THE “CHAOS” IN ME/CFS?

Conclusion

dr. david bell

Dr. David Bell

Chronic fatigue syndrome (ME/CFS) is not sepsis but the two diseases do share some intriguing characteristics. Both sepsis and ME/CFS often start with an infection; oxygen delivery to the tissues appears to be a problem; blood pressure, blood volume and blood flows are affected, and sepsis often results in a syndrome that symptomatically looks very much like ME/CFS.

As Roberts points out what’s happening in the very, very complex disease known as sepsis is still unclear. Whether or not the new drugs being developed for sepsis will play a role in ME/CFS is, of course, unknown as well. Drugs being developed to turn off the anti-inflammatory response are intriguing given the state of “immune exhaustion” that some studies have found in ME/CFS.  If ME/CFS does turn out to be a kind of “slow sepsis” it will be a good idea to keep an eye on the developments there.

Stevens, in fact, suggests that the ME/CFS and sepsis communities stay in close touch.

It seems logical that the ME/CFS community should begin to share knowledge and resource with the sepsis organizations such as International Sepsis Forum (ISF), Global Sepsis Alliance and Sepsis Trust and Post Sepsis Syndrome patients. The curative challenges ahead are monumental, involving complex pathways which have yet to be researched, and will no doubt result in individualized treatments.

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82 Comments

  • Francis Martin

    January 1, 2018 at 8:15 pm - Reply

    Cort,
    Interesting article but I need to try to read it a few times.

    I seem to recall that you were impressed by this study:
    “Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An ¹¹C-(R)-PK11195 PET Study”.
    By Nakatomi Y (and others). On the face of it this (Japanese) study would seem to be consistent with the chronic sepsis model.

    Thanks

    • Cort Johnson

      January 1, 2018 at 9:38 pm - Reply

      Yes, from what I read, at least in the more severe kind of sepsis, called I think is called septic encephalopathy, brain inflammation does occur as a result of inflammatory processes, circulatory problems and neurotransmitter issues.

  • Issie

    January 1, 2018 at 9:46 pm - Reply

    I think there for sure is a connection. With me – there is. Having CIRS – there is definitely an inflammatory response and autoimmune connection. They also feel there is a mild sepsis state with it. I feel this is a big part of the puzzle.

    Issie

    • Cort Johnson

      January 1, 2018 at 10:01 pm - Reply

      Ha! I didn’t know that a state of mild sepsis might be present in mold illness as well…I remember Dr. Montoya stating that his gene expression study (not published yet I don’t think) suggests that ME/CFS most resembles systemic inflammtory syndrome I think it was (??)..Definitely an inflammatory component but perhaps also a missing anti-inflammatory component. Definitely complex whatever it is.

      • Issie

        January 1, 2018 at 10:21 pm - Reply

        Here’s an article you may enjoy on CIRS and sepsis.
        http://www.lotusholisticmedicine.com.au/blog/environmental-medicine-blog/suffering-chronic-form-sepsis/
        Issie

      • Beca

        January 2, 2018 at 1:35 am - Reply

        Chronic Inflammatory Response/CIRS/Mycotoxin Poisoning is certainly in the mix according to thousands of posts across the span of all these NEID related conditions over two decades. With 2017 floods and hurricanes provoking millions of immune systems, and the appearance in June of Great Plains Labs’ brand new very accurate mass spectrometry MycoTox test for actual mold metabolites for a (meh) affordable $299., many will be also provoked to a faster track for healing. With a below-$100 Ancestry.com DNA test which retains a very important chip for SNPs that are now left out of the 23andme, we can find out how the mold haplotype gene status stands. Rumor has it that Dr. Klimas’ research at the VA in Miami is currently showing that with the addition of unspecified hormones to a control group of mice with ME, these mice have actually been CURED, cured of ME. Of course all environmental toxicity factors in the home and our external environments (here is where my activist friends shine, and there will be countless more becoming activist this year) must be adddressed and detoxed as much as possible through non-GMO diet, nontoxic cleaning products, building materials, cosmetics, etc., etc. for the healing pace to quicken. The pace at which we educate others may parallel the pace at which we heal.

        • Issie

          January 2, 2018 at 1:47 am - Reply

          I’ve been talking about what my doc found in my thyroid, the biopsy determined there to be glomus fungus. He originally thought it to be a protozoa, as it forms biofilms and is in the blood. He knew this fungus could form tumors. (It has been found in heart bypass plaque, a brain tumor, prostate cancer and my thyroid.) I had 5 in my thyroid year before and now have 3 and the largest one has shrank by .5 in size. Doing treatments for CIRS, MARCONS, Lyme and this fungus. I’m improving. Yayyyyy!!!! My MCAS, POTS and FMS is better too. I still have a ways to go……but on a forward path.

          Issie

          • Sofy

            January 2, 2018 at 10:24 am -

            scary but hopeful issie!

        • Aidan

          January 2, 2018 at 4:13 pm - Reply

          I thought Klimas was using vitamins/minerals in her so-called Cure I recall her saying going for the Cure on a Video, even in Polyneuropathy some could have vitamin/mineral deficiencies going on but that would only be a subset of patients B1 B6 thiamine etc.

  • D.

    January 1, 2018 at 10:06 pm - Reply

    Hi Cort. Happy New Year and thanks for this very interesting article.

    Did you see this? Perhaps it ties all together? http://www.couriermail.com.au/technology/science/australian-scientist-prove-chronic-fatigue-syndrome-is-real-and-have-discovered-a-test-for-it/news-story/2f62ddcf2d5a625b0c1f185fc649bbf0

    • Cort Johnson

      January 1, 2018 at 11:45 pm - Reply

      Thanks. I’m hoping to contact them and see how they’re doing. Thanks for the reminder.

  • Gail Williamson

    January 1, 2018 at 10:19 pm - Reply

    What if we had a low-level form of sepsis? What if there is an existing cure?

    At the OMF symposium last August, Wenzhong Xiao spoke and noticed that CFS has a 100% correlation with SIRS (Sepsis, without a known source of infection). Check out his video, especially at the 14:00 minute mark: https://www.youtube.com/watch?v=nU3__bp8DUk&list=PLl4AfLZNZEQOQG8vr4Rn_YY1E1cbFIu45&index=13
    That certainly caught my attention!

    Around the same time I read an article that critical care MD, Paul Marick found a cure for sepsis, using three components in an IV: Vitamin C, Thiamine and Hydrocortizone. People that would have previously died from sepsis were cured. How hard would it be to set up a double-blinded, placebo controlled study to do this on ME/CFS patients? Would we even need that or could doctors start treating us without doing a study?

    Here are links to 1) an article about Dr. Marik and his protocol and 2) The actual dosages of his protocol:

    Article: http://www.evms.edu/about_evms/administrative_offices/marketing_communications/publications/issue_9_4/has-sepsis-met-its-match.php

    Protocol: http://www.evms.edu/about_evms/administrative_offices/marketing_communications/publications/issue_9_4/sepsis.php

    • Eleni

      January 4, 2018 at 3:17 am - Reply

      Thanks for posting those links Gail. Interesting stuff. If it is not harmful, as he says, I also can’t see any reason why we couldn’t try it if we could find a doctor to administer it.

  • Eimear

    January 1, 2018 at 10:27 pm - Reply

    Cort, in a separate vein, have you any idea when the pilot suramin trial is due to commence….so we can find out if it works or not!

    • Cort Johnson

      January 1, 2018 at 11:48 pm - Reply

      Stay tuned! I was told we’re going to hear some more about that over the next two weeks.

  • R

    January 2, 2018 at 2:13 am - Reply

    thinking.. so we have mast cell disorders here, looks like it may be hereditary alpha tryptasemia and if not, we (daughter and probably my sister and her girls) have abnormally high tryptase here and familial so it’s genetic trait one way or another. We have the “trifecta” (dd and again most likely my sister, et al) of HEDS, POTS/NMH and MCADs. My sister and her girls are hyperflexible, have POTS and NMH, and I am suspecting some manifestation of MCAD. My sister has CFS-ME and her girls struggle but are functioning in “normal world.’

    So I think that’s a genetic trait that was triggered. I have CIRS and my daughter has elevated TGFB-1, which is not unusual for someone with HEDS I think.

    So if this sepsis like immune response is triggered.. and that trifecta is triggered (chicken/egg?) … we are stuck in a cycle with a positive feedback loop if mast cells are a part of this.

    I had debilitating pain flare this past month. I was subluxing all in joints from neck into hips. Even small joints involved. Horrible burning neuropathic pain. I became lead again. I was third spacing into my legs and in a POTS/NMH attack (I am more NMH lately). I finally think to start atomizing steroid and cromolyn sodium into my sinuses and it cleared up. I think this is kind of similar to the avoidance concept of “getting clear” in a way..

    My sinuses were triggered by dry heat of HVAC. That triggered a cascade. I’m not even thinking mold at this point. Because I am in such a hyperstate of mast cell activation (and whatever else is involved). My sinuses are a hot spot for whatever reason for mast cell activation.. and I think I understand whatever virus (forgetting) could be active in sinuses as well.

    If the above is true then it seems to me that is mast cell activation and microglial activation involved then these two are also triggering the “sepsis” inflammatory state. Mast cell and microglial activation are connected.

    Intense emotions or even just some emotions, stress.. trigger it for me. Wipe me out and I understand that nervous system virus can be involved and especially if low immune activity is part of this paradigm. But.. also stress triggering mast cell activation is another way this cycle just builds and builds and we have that positive feedback loop that is so hard to get out of.

    I do as well think that we have neural retraining by the sickness or classical conditioning involved in this process. I was expose to toxic mold but I was getting sick before that. I think stress and trauma were my first triggers to activate this process (in whatever order). I think pregnancy and nursing toddlers. I don’t think it was one thing. But I am very hypersensitive to mold in a very bad way, neurological inflammation and steroids and sodium cromolyn atomized definitely help this. I am relocating from east coast to a less humid state because of this. it’s like fighting a monster. I’m also starting neural retraining and focusing on bringing stress and trauma down, creating safety.. the day to day and social and political medical realities illness creates trauma. I’m not saying anything prolific here.. just my thoughts coming together.

    So that’s my two cents. 🙂

    • Issie

      January 2, 2018 at 3:02 am - Reply

      It’s genetic in my family too. A marker they look at in CIRS and sepsis is HLA-DR. These are genetic markers and show inability to detox and throw off mold, biotoxins and Lyme (with CIRS testing). Cromyln is one of my better helps too and MCAS is easily triggered for me too. Yes emotions and stress can do it. So maybe, this is the genetic component here. My sister and the one boy she tested are also positive for CIRS and MARCONS. I think it’s worth taking a look into this. If you genetically can’t throw off mold or biotoxins – it can become an internal issue and not be external. But when you get exposed externally – even a tiny amount – can start a domino effect.

      Issie

      • Issie

        January 2, 2018 at 3:51 am - Reply

        https://www.betterhealthguy.com/tfim2017

        This is worth a read and ponder. Dr. Fry spoke at this conference and there is more info on Mold connections to CIRS, MCAS and Fungi.

        Issie

      • Issie

        January 2, 2018 at 4:55 am - Reply

        http://www.biotoxinhelp.com/my-hla-dr-results.html

        You can see how HLA DR genetic markers are thought to connect to different illnesses. This chart shows what the combos mean.

        Issie

        • R

          January 2, 2018 at 5:25 am - Reply

          My daughter has the one related to connective tissue problems and I don’t. I have EDS 8/9 of Beighton and so does she. Her dad has the one she has and he is not hypermobile nor is he stiff from compensating. It just doesn’t make sense to me and Shoemaker is not on my list of people I trust. I think he’s biased. Thank you, though 🙂 I think there is something else.. maybe if Shoemaker is correct about his HLA types… there is something else triggering it to become a “syndrome”..

        • R

          January 2, 2018 at 5:30 am - Reply

          Forgot to add, not self-diagnosed. Geneticist even re-tested me last visit. I have HEDS. I think this is all messy. My son breaks out in rashes all over his body, gets dizzy spells (has passed out twice) and is hypermobile but he does not have the “syndrome”… this one worries me because we don’t know what activates it but I think the genetics are there or some of them.. and we don’t know what genetics are there that keep it from becoming a syndrome if that might be the case. I have one child who is already at this point fully disabled at 20, was at 19 and was before that.. we just we in shock and floundering.

      • R

        January 2, 2018 at 5:11 am - Reply

        Hi 🙂 We were all tested and son and I have one “dreaded” multisuseptable and husband and daughter have the other. I am not sure I believe in Shoemaker’s work so much. I think he’s identified inflammatory markers and he generalizes to mold and biotoxins way too much.

        I hope that we will be able to test for Hereditary Alpha Tryptasemia since my husband also has a high tryptase, but he is not sick. I believe the team a NIH call that having a trait but not a syndrome. My daughter and I have the syndrome (particularly HAT if we test for the gene replication).

        My husband and mother have “dreaded” HLA types and neither are sick from mold. Both have lived in toxic mold, my mother, a level 5 sick building for 3 years. Shoemaker also lost me when he decided it as good judgment to call my HLA type “dreaded.”

        For what it’s worth, my unsick husband also has methylation snps that people like us have and he is still ok. So I think there is more to it and we haven’t found that yet.

        I think once “activated” or once becomes a “syndrome” that we have a problem. I don’t think we know what that is yet?

        I do know my daughter is 20, has a port for IV saline infusions 5 days a week, has had c1-c2 surgery for instability, has a tethered cord and we are in process of ruling in or out IIH (intracranial hypertension). She has high tryptase, autoimmune urticaria, MCAS until we know more. Her dad has a higher tryptase is not hypermobile, does not have obvious mast cell disorder… on abx for a year for lyme and never herxed. Never had any improvements and he never had bad symptoms other than pain in his thigh (I am not kidding).

        Generationally I don’t think things are improving. Not here and not with other families I am familiar with.

        • Issie

          January 2, 2018 at 6:45 am - Reply

          Dr Fry was having me use Doxycycoline and I wasn’t herxing either. Come to find out with my MARCONS test – I’m antibiotic resistant to it. No wonder it did nothing. Now with herbs – much more of an effect and benefit.

          Issie

          • R

            January 2, 2018 at 7:52 am -

            My husband isn’t sick. He was treated by a LLMD who thought he had to treat someone with positive bands even though he wasn’t sick or symptomatic. I regret our lyme days. I underwent 6 months of treatment that triggered my mast cell disease even further. I had one generic positive band. I am very leery of unproven diagnostics and treatments and lyme is one of them.

    • Cort Johnson

      January 2, 2018 at 3:22 am - Reply

      Get that stress down R! I can’t but help imagine it will help some. Thanks for sharing your story and good luck!

      • R

        January 2, 2018 at 5:20 am - Reply

        Thank you, Cort. Three years of Ehlers Danlos work up for yourself and a child is really hard. Requires a lot of encounters with the medical system can cause medical trauma. One doctor we had to see for one of the many workups we had to work through looked at me and said, “You look like one of my cancer patients who’s had to work the system too long.” That was extremely validating for me because it was true. The system (the people in the system can be very taxing and cruel). So I am so looking forward to retiring from this work up and the surgeries and procedures. I am very grateful for the EDS experts who have helped us. I don’t know where we would be.. so lost and I can’t imagine. But it has been very hard on us as well. And this is not the cure. This is not a defect. Its a syndrome that has something else behind it. There is no magic cure. So we will rest and decide how we choose to live our lives in this world as we are. I am tired of the fight and I don’t want my daughter living in the fast lane like this for much longer.

        • Issie

          January 2, 2018 at 6:40 am - Reply

          I was a patient of Dr Fry before he stopped seeing patients and he went in to research only. So I was DX with Protomyxzoa Rehumatica – but with his further research and my biopsy he feels this is a mold. I see a Naturopath who is trained by Shoemaker and Klinghardt and some other well known docs in these arenas. She is forever taking other classes and is learning from others and her own experience with her patients. I’m sure my case would be a mixture of many hypothesis. I don’t discard what seems to be helping though.

          I also have a DX of EDS from Mayo and HyperPOTS and MCAS. I also have Hypogammaglobulinemia and no immunity to any of the 26 strains of pneumonia I was tested for. Just a bare immunity to 6. So I’m certain autoimmune is an issue.

          I’m also sure the gut ecology plays a part. I nearly died from colitis that was antibiotic induced due to a ruptured appendix and pneumonia. They were trying to save my life – but the bacteria in my gut nearly took me out. So I had to do chemo 2 times and kill off all bacteria – good and bad. Then try to properly repopulate. Has been a lifelong struggle. I was just reading an article on MS and how the gut ecology is out of balance in those. It was also interesting that some of the most common probiotics used today is now being felt could make it worse. I’ve also known to rotate strains, because you don’t want to imbalance certain strains. But didn’t realize that could make an autoimmune disorder worse (possibly). I remeber Ken Lasserson warning of some strains not being good for CFS. I found another article saying that to be true in RA. So thinking, maybe to get our good bacteria, food – may be a better option.

          My grandmother, we think, had POTS. My mom had MCAS really bad. My dad had autoimmune issues. So, lots of genetic/epigenetic dysfunctions. And you’re right – just because you have a snp or gene doesn’t mean it will be an issue with you. But…if it is an issue – good to have something to do about it and have that piece that can fit – if it does. I think some people’s immune system works better and despite their genes – their immune systems keep up and don’t misfire.

          Sorry about your daughter. My nephew is 18 and is having a time himself. I’ve had these issues most my life. Just, at times, worse than at other times.

          Issie

          • R

            January 2, 2018 at 7:55 am -

            This is all not proven science. I won’t let hypothesis rule my life anymore. I want to relax and I don’t want my daughter in this arena at all. When they find a cure, we will all know. I wish you well.

          • Issie

            January 2, 2018 at 9:21 am -

            Lots of us are finding our lives improving by treating mold, Lyme and CIRS. As for science proof – my thyroid tumors have decreased down to 3 from 5 and the largest one is smaller. (Also, my brain tumor, in 6 months, doc says is smaller.) It all will take time for it to prove out. But I applaud those docs brave enough to go outside the box – to find answers other docs haven’t found. I went Western medicine, initially – it didn’t work (and docs nearly killed me). But alternative is working. Cleansing toxins out of my life – both my environment and body is making a difference. I’m certain diet plays a huge part. Also working on my perception/attitude about life and challenges has made a huge difference in my ability to cope and will to “Hang Tight” despite the challenges and to have a sense of purpose and quality. I seldom feel the need for forums or researching. If I feel what I’ve learned, through experience, may help others – I try. But not everyone will try alternative things. They want their Western docs to tell them what to do next. I don’t live my life that way. It’s my body – I decide for myself. I want an educated opinion from my docs – but ultimately I’m responsible for what I do or don’t do. So I try to educate myself and make an informed decision. Hopefully, it will be the right one. So far…..all is good. I’m encouraged!

            I’m not of the opinion that there will be a magic pill. So, I do what I can NOW to change what I can. Going along without making changes, and expecting something to change — isnt going to happen. I had to be strict vegan for awhile. I reversed Chronic Kidney Disease from stage 3 to 1. Now I’m not vegan – but I’m doing the low amylose diet and anti-inflammatory diet. Both needed for detox and to eliminate mold and fungus. I also intermittent fast. Also binders so toxins broken lose won’t recirculate and will be eliminated.

            Cort has several success stories on his blog site of others who have their lives back from this protocol. Worth a read.

            Issie

          • R

            January 2, 2018 at 8:38 am -

            thank you Issie.. I am just so weary of all of this. i left a house and all belongings due to mold. i was carried away with the mold community blowing into my sails.. i have worked with yasko and her protocol, followed klinghardt, etc etc etc etc I am tired. I cannot see this chasing healing paradigm for my daughter.. not meaning to refer to anyone but myself and what I have done and focused on the last decade. i’m very sorry you have been through all that. it’s not easy being us. i know of people who improve using all kinds of protocols, but i am morally exhausted. i think i’ve contributed to my own trauma by staying too long (in a sense). it’s just time to rest. we also probably qualify for a specific immune deficiency diagnosis. the diagnoses keep adding up. we are all so weary here. i am not sure why i commented on this article. i just want to learn to sit back and “be sick” for a while and be ok with that. i think we all probably need these breaks but parents don’t get to rest when they need to as much. the only support for parents that i have found (and i am so so so thankful for it) is support for finding medical professionals and for working the system. its so needed but it’s about production, and though there is moral support, the focus is producing medical care.. i am talking about the EDS race track but i see it in other forums as well. those of us with EDS and EDS kids are racking up surgeries and procedures, usually there are wheelchairs and piccs or ports.. nobody gets better because of an antibiotic or herb.. they improve .. my daughter can hold her head up all day due to her c1-c2 fusion and has less pain but she isn’t well. maybe cort or someone should focus on the children with CFS-ME and what it’s like to be a sick parent of a sick child or a well parent of a sick child..i don’t see this anywhere and maybe i’m looking in the wrong places but again as much as i am so so so grateful for the help with direction, understanding the condition down to some pretty intense details, advocating etc.. think about it.. some of us have children who are sick or sicker than us.. what is this about? some of us are sicker than our parents like possibly you and i know me.. and my sister and her kids. something has gone very wrong. that said.. it has and i want my daughter to learn to wait and be ok being where she is and to be ok advocating for herself and walking out of cruel insane doctor’s rooms and all that. some of these kids have developed their own social identity.. and it’s less about “getting healed” and more about the right to be who they are and where they are. I guess these are the functioning disabled children, young adults. my daughter follows some on social media. there is a growing population of children.. more than several in our old homeschool group. its not all lyme or mold and if it is mold.. its not the cause. they often have EDS and POTS… why? rhetorical question and probably going to regret this. there is more to “being healed” than chasing healing.. i’ve chased healing and like i said in another comment.. i don’t want that life for my daughter… i want her to have the choice to just be ok pacing her life her way.

    • Lisa

      January 17, 2018 at 5:32 pm - Reply

      My blood pressure is low and I am I’m severely sensitive to mold. Unfortunately I have had multiple exposures living in Miami. I keep trying to find a home without it. HA
      I do not know all the lingo that you all are using because I try not to read a lot about the disease. It is a double edged sword for me. I want to be informed, but don’t want to get discouraged or depressed. Have any of you had MSG issues? I just had a dose of it at a party and have been suffering for days. The first 24 hours were hell. I thought I would have to go to ER but am chemically sensitive and didn’t want to lay on sheets with bleach. I rode out the insane pain at home. Well, thank-you for letting me chime in here. I need to learn more and be involved with others who suffer from this disease because those who don’t have it, don’t get it.

  • LuciK

    January 2, 2018 at 3:19 am - Reply

    I have been contemplating whether chronic fatigue syndrome is a low-grade, atypical form of sepsis, but mainly because of what I’ve read about the role the gut plays in sepsis. As I understand, the composition of the gut is altered by sepsis and might contribute to the development of organ failure. Microbiome treatments are proposed for sepsis patients if the gut is affected. I became sick with ME/CFS after a flare-up of ulcerative colitis and after finishing a course of prednisone (cortisone) to suppress the colitis. I’d had Epstein Barr virus plus a series of stressful events. Once the ME/CFS knocked me down, my gut altered immediately and the colitis has been absent for the 16 years I’ve had ME/CFS. Whatever the hell ME/CFS is, its strong enough to suppress ulcerative colitis (an autoimmune illness??) for 16 years and more. Interesting to read Gail Williamson’s comments about Paul Marrick using an IV of Vitamin B1, Vitamin C and hydrocortisone to cure sepsis. Methinks we need to include the gut in the sepsis model for ME/CFS and to do more research on how all of these factors may be linked.

    • Cort Johnson

      January 2, 2018 at 3:24 am - Reply

      I’m positive that the gut must be affected in sepsis because it seems like just every organ. Stevens, in his very technical overview, points out possible HPA axis connections as well.

  • Clara

    January 2, 2018 at 5:42 am - Reply

    If CFS has a 100% or nearly 100% similar gene expression profile to SIRS, then what does it mean for CFS to be or not to be SIRS or sepsis? Maybe it’s like the difference between having a fever of 99 degrees F or 110 degrees F. Both are fever but not the same.

  • KME

    January 2, 2018 at 11:15 am - Reply

    Intriguing. Would be nice to see if discussion between the two research communities would bear any fruit. In the treatment section “hearty doses of antivirals” are mentioned. Should this be antibiotics?

  • dejurgen

    January 2, 2018 at 1:03 pm - Reply

    Thanks Cort for the great blog once more.

    I feel there are plenty of things that sound like ME in it. You added a few nice new twists as well: H202 as a way to remove NO, after infection got NO sore first. Wow, nice one. That could give first way too much vasodilation and later way to much constriction. That could be a nice take on the difference between the sometimes observed high temperature and over active immune phase at the beginning of the disease and the very low body temperatures paired with an exhausted immune phase later on.

    Happy new year Cort and a better health to all of us in 2018!

    • Cort Johnson

      January 2, 2018 at 4:43 pm - Reply

      Thanks!

  • Lil

    January 2, 2018 at 2:48 pm - Reply

    Great article Cort. One thing that really caught my attention in this article is that oxygen was not getting to the tissues. Also, I know that many bacteria and viruses are anaerobic, they survive in a low oxygen environment. That’s why they take oxygen away from entering into your tissues and organs so they can thrive. In addition to antibiotics and antivirals, how can you kill them? The answer is 100% oxygen Hyperbaric Chamber treatment. This is different than just getting o2 via nasal cannula. HBT penetrate the oxygen to get into your tissues and even help you develop new blood vessels that increase blood flow to the brain also. I personally think this is the answer for all of us to get well. In 2015 they did an interesting study in Israel with Fibromyalgia patients that receiver 40 treatment that were 90 minutes long under 2 atmospheric pressure over a 2 month period and had great results. Many felt 100% better and even returned back to work and their 3 month follow up also showed that none of the symptoms returned. The problem is that insurance companies don’t approve it for fibromyalgia or CFS and it is expensive. But I decided that I am selling my home and moving from Naples to Myrtle Beach (where the cost of living is cheaper) and I am going to buy my own chamber and do my own treatments since it’s cheaper that way ( only problem is that O2 is considered a drug, so you need a prescription for it and the law states that you can only have 1.3 atmospheric pressure in your own home) so I’m thinking it will just take longer to get the same results that the Israel study demonstrated. But this is one question that I am still trying to get the answer too…Can 1.3 ATA be just as effective as 2.0 ATA but just need more treatments? Anyways, that’s my plan and it will take some time, but I will let you all know if it works.

  • HOPE

    January 2, 2018 at 5:56 pm - Reply

    Thank you Cort. ME sufferer for 12 years and had sepsis 3 times from infections but not recognised in UK yet. First twice were 0ver 30 years ago. I have vascular problems that run in my family and had a TIA with a throat infection. Daughters also have ME.
    I’ve always thought that ME could be a slow sepsis illness as I had severe reaction to mosquito bites while abroad 37 years ago. It’s good to see this being taken seriously and I never know which charity to turn to ME Sepsis or both. I think both is the best plan.
    Good luck and please keep me informed. Looking forward to the blogs.

    • Issie

      January 2, 2018 at 7:03 pm - Reply

      Hope,
      Dr. FRY used to say that we got Protomyxzoa through mosquito bites. He said it was much like malaria. I wonder if mosquitoes aren’t spreading things to us. There’s the Zika virus and dengue fever and others. If our immune system is compromised – makes sense we can’t throw things off as our bodies accept rather than reject the invaders. We wind up co-existing with them. Some do better than others.

      Issie

  • Issie

    January 2, 2018 at 8:32 pm - Reply

    To add another element to this and maybe another piece to the puzzle…..inflammatory states, IBD, and clotting issues along with sepsis can all be connected. We just found two markers for me as high with clotting disorders. My Naturopath thinks there is a connection with CIRS, biofilms due to fungus/protozoa and maybe a genetic component. My mom and grandmother both had blood clots. We are using enzymes to breakdown biofilms and to kill pathogens. They will also thin the blood.

    https://www.hindawi.com/journals/thrombosis/2012/594986/

  • Francis Martin

    January 2, 2018 at 9:13 pm - Reply

    I haven’t read the above comments.

    At the OMF symposium, Mark Davis presented data showing activation of T-cells (clonal expansion). I assume that the presence of fungi, i.e.causing activation of T-cells, would be confirmed by identifying the sequences (epitopes) which the T-cells are targeting. OMF is funding the work i.e.to try to identify what the T-cells are targeting.

    I suppose that to be significant the yeast etc. would need to be causal not the consequential.

  • JL

    January 2, 2018 at 10:51 pm - Reply

    I think Dr. Bell have a lot of very interesting points and observations about this illness. The idea of a kind Sepsis being part of the illness or maybe the base point of this illness is very compelling, I think it could possibly be a major factor.

  • Cecelia

    January 3, 2018 at 1:00 am - Reply

    My impression is that medical research stopped studying hydrocortisone as a treatment many decades ago after the overdosing problems from its initial years of use—before doctors had figured out what the physiological dose was. I learned that the drug companies had no interest in its study once it was out of patent, as it is extremely cheap to make. Yet this is a master hormone with all kinds of beneficial regulatory effects when used in the proper dosages and situations. Coming from a medical family, I used to hear doctors say that it saved lives when nothing else could in emergency situations. I can’t understand why they hadn’t ever tried it on sepsis. Maybe they had tunnel vision in their view of this illness and what treatments were supposed to be of value—even though their patients weren’t responding, with many dying or else suffering long term damage.

    I might add that hydrocortisone is easily the most supportive, helpful medicine I take for ME/CFS symptoms, though the dosage I take is of course a lot smaller than is described in the emergency protocol above.

    What else will it take for research to establish the many uses and best dosages for this hormone? Sometimes I think the only answer that medical people and often patients will believe in is the most arcane, expensive and high tech stuff, as if only a terribly sophisticated answer could be correct for a problem that has baffled, no doubt, the best minds. Maybe the medical establishment would feel humiliated by a cheap, pretty obvious treatment; I know the drug companies aren’t interested.

    • Gail Williamson

      January 5, 2018 at 12:19 am - Reply

      Cecilia, I don’t know if you saw the link I posted above, but Dr. Paul Marik has evidently found a cure for sepsis, using an IV of hydrocortisone, Vit.C and Thiamine. I really wish CFS researchers would contact Dr. Marik and maybe try this out on patients. How hard could this be? http://www.evms.edu/about_evms/administrative_offices/marketing_communications/publications/issue_9_4/has-sepsis-met-its-match.php

      • Issie

        January 5, 2018 at 5:17 pm - Reply

        Gail, Thiamin is one thing I use. Years ago, I realized a lot of my symptoms seemed to sound like a deficiency with this B vitamin. (Side point – mosquitoes don’t bite me, if I use it – otherwise they love me). We also added Alpha Lipoic to that occasionally – it helps with NO levels also helps blood flow. There have been other POTS people to find this helpful. But the Alpha Lipoic can vasodilate – so be careful with it.

  • Erik Johnson

    January 3, 2018 at 3:10 am - Reply

    I told just about every major researcher at the Stanford symposium about “Mold at Ground Zero for CFS”, and showed my poster of selected documents which back up my story.
    Not a single one was interested.

    So at least we know they made conscious decision to not find out.

    https://cfsuntied.net/2016/09/13/how-to-make-sure-an-invisible-disease-stays-that-way/

    • Issie

      January 3, 2018 at 5:39 am - Reply

      Erik,
      Some of us keep telling what we find with ourselves – yet others either ignore or dismiss our findings or think we’ve lost our good sense. You have to feel good that you tried. In time, someone else may say it was their idea or finding….Credit where due – probably won’t happen. But, feel good that those who listened have found at least a measure of help. I’m glad I found this path and more of my puzzle pieces. I, for one, applaud your efforts. I know, from experience, what it takes to stand up for what you believe when others don’t see it…..YET.

      Issie

  • Susanna

    January 3, 2018 at 6:08 am - Reply

    Thank you! It definately feels like some kind of ongoing sepsis.

    Could this be a reason?

    http://southernutahlive.com/video/view/New-bacteria-isolated-at-biological-research-lab-at-DSU-reveal-foreign-invaders-2017-03-09

    https://amp.thespectrum.com/amp/99543206

  • HOPE

    January 3, 2018 at 7:15 am - Reply

    Thank you Issie for the information and other comments. I don’t recall anything to do with mould exposure but lots of exposure to possibilities, with too many things to mention. The SIRS connection has been highlighted many times on other forums and this does seem to be the closest to what I experience. Unfortunately ME in the UK is only just starting to become highlighted through Unrest film which we are all very grateful for. With our NHS in crisis nothing much is being done to help anyone at the moment. It’s all very worrying here. Technology is being beginning to catch up with all chronic diseases and hopefully will solve all our problems very soon.
    Recognition of ME being a serious neurological disease and Sepsis being recognised as the serious life threatening disease it is now in the UK is the most urgent. We need more high profile awareness and charities are doing all they can to help.

    • Francis Martin

      January 3, 2018 at 8:54 am - Reply

      I’ve heard that the UK Conservative Government has given a commitment to maintain research funding when the UK leaves the EU.

      There has been little or no funding for biological research except possibly the Newcastle University Seahorse study which was funded by the Medical Research Council. Therefore, re ME/CFS, the Conservative Governments commitment should be easy to fulfil.

      The Conservative Government did of course fund PACE—-.

      Is Hope an UK organisation/individual?

  • HOPE

    January 3, 2018 at 11:47 am - Reply

    Francis Martin
    UK individual. More funding is going into Biomedical research in the UK. If you look at ME Association and the ME/CFS BioBank based at the Royal Free Hospital it will have the information you require. We need much more funding though and awareness is key to informing the medical profession and general public.

  • dejurgen

    January 3, 2018 at 3:25 pm - Reply

    I do find the idea of a combined derailed blood flow, inflammation, damage to the capillaries and blood oxygen not reaching the tissue an interesting hypothesis for already quite some time.

    One thing however does keep me wandering: what about the liver?
    The liver should have quite an increased load under these conditions:
    * increased anaerobic functioning, liver must recycle lactate. The large scale recycling of lactate should cost plenty of energy.
    * increased production of ROS and RNS, liver must clean up and recycle chemicals like glutathione on a massive scale.
    * likely increased infection, puts an increased load on the liver.
    * plenty of other toxins that must be removed by both the liver and kidneys.
    * often increased intake of strong medications, often damaging liver functioning

    It seems all those things would require increased liver functioning. Things like recycling lactate do cost plenty of energy to be provided in the liver. All of this should require two things:
    * increased (compared to healthy persons) activity/productivity of the liver on a 24/24 7/7 time frame.
    * increased (compared to healthy persons) blood flow towards the tissue of the liver on a 24/24 7/7 time frame.

    If this would be correct this leaves two major questions:
    * How does the liver manage to keep doing double shifts while most of the other organs can’t manage half of what they should do?
    * More importantly: what does cause the liver to keep *receiving* enough blood flow and oxygen to the capillaries and tissue?

    If it would be as active as it seems to be, what does “protect” the liver against the same thing that almost all other tissue including the brains are vulnerable to? It has the advantage of a good location (close to hart and at more constant body temperature then for example the legs) and is receiving big support from increased adrenaline but so does the brain. Was the liver initially protected against capillary damage so not drawn into the disease at onset or is the protection an ongoing thing?

    It all the more gets more “wondrous” as patients rarely mention problems with the liver while almost all other organs get affected in some way. I can see why it gets very few attention in ME as it is not troublesome, but understanding why it shows such resilient behavior could prove more then useful.

    • Issie

      January 3, 2018 at 4:13 pm - Reply

      Dejurgen,
      I’m constantly aiding my liver. I had a fatty liver at one time – now they say there are lesions – but no fat. I use Milk thistle and have for years. Also turmeric helps keep things detoxed. They work on different levels. I pay much attention to my liver. It and the kidneys are major detox organs. Both of mine taxed. The spleen is another organ that aids in detox of blood and lymph. It too can become inflammed. It also helps with immune function. People should be concentrating on all those organs and trying to improve their function.

      Issie

    • Gijs

      January 6, 2018 at 11:11 am - Reply

      Hi deJurgen, we’re on the same page. The liver is a very interesting organ for more research i say that for more then a decade. Did you know that if a ME patiënt take asparine it takes much longer before it is out of our blood. I really like your hypothese. It is alsmost the same as mine. I think low bloodvolume is an objective marker for this disease.

      • dejurgen

        January 10, 2018 at 2:26 pm - Reply

        Hi Gijs,

        I did not know aspirin takes longer to get out the blood of ME patients. Another interesting painkiller may be paracetamol: it consumes glutathione, which many of us are probably already short of. In lack of sufficient glutathione one of the three products paracetamol is converted into can not be sufficiently removed out of the body. Unfortunately it is a highly toxic byproduct: NPAQI that is very damaging to the liver.

        See https://en.wikipedia.org/wiki/Paracetamol en https://en.wikipedia.org/wiki/Paracetamol. So while it is only a theory that it may not go well with ME and FM patients, I stay very far away from any paracetamol use.

        Just as Issie I try to take care of my liver too, by eating plenty of green vegetables and taking Maria thistle containing supplements. I do not know if that is the same as milk thistle but both sound related. I can’ tell I feel clear evidence these supplements work. I don’t feel clear evidence any supplement work with me. But I believe it should help long term. As to supporting the spleen, that is new to me. I would not know how to do that other then to make sure I don’t lack iron.

  • chris B

    January 4, 2018 at 12:31 am - Reply

    In a review article on coagulation abnormalities in sepsis I read that coagulation activation with atifibrinolytic state occurs.https://www.sciencedirect.com/science/article/pii/S187545971400110
    When septic injury is controlled the haemostatic imbalance diminishes in a few days with a final progressive fibrinolytic stage. But what if this fibrinolytic stage does not occur?
    I sufferd from FM for the last 20 years, mainly myofascial pains. Extreme fatigue not frequent and of short duration but often shortness of breath.
    Twice yearly I visit my endocrinologist for a big checkup. She has many patients with CVS,FM and Lyme . A year ago she purchased a high resolution dark field microscope in order to examine live blood preparations in search for borellia parasites.
    When I visited her she was very enthusiastic about her new toy an proposed to examine my blood “just to get more experience”. To my great dismay my blood was FULL of (fibrin?) threads with red blood cells aggregated “en rouleaux”.Really I thought I would not make it home alive! I eventually did and took a supplement for “advanced fibrin defense” containing serrapeptidase,nattokinase,bromelain,papain and lipase for In a review article on coagulation abnormalities in sepsis I read that coagulation activation with atifibrinolytic state occurs.https://www.sciencedirect.com/science/article/pii/S187545971400110
    When septic injury is controlled the haemostatic imbalance diminishes in a few days with a final progressive fibrinolytic stage. But what if this fibrinolytic stage does not occur?
    I sufferd from FM for the last 20 years, mainly myofascial pains. Extreme fatigue not frequent and of short duration but often shortness of breath.
    Twice yearly I visit my endocrinologist for a big checkup. She has many patients with CVS,FM and Lyme . A year ago she purchased a high resolution dark field microscope in order to examine live blood preparations in search for borellia parasites.
    When I visited her she was very enthusiastic about her new toy an proposed to examine my blood “just to get more experience”. To my great dismay my blood was FULL of (fibrin?) threads with red blood cells aggregated “en rouleaux”.Really I thought I would not make it home alive! I eventually did and took a supplement for “advanced fibrin defense” containing serrapeptidase,nattokinase,bromelain,papain and lipase for six months. On my next visit to my endocrinologist my blood image was quite normal. I continue with 1 capsule instead of 2.
    My myofascial pains remained but the shortness of breath is much better.
    Then I remembered reading something about fibrin and CVS and looked it up:
    ..in the book Encyclopedia of Medical Breakthroughs & Forbidden treatments Page 100, under the heading of Hypercoagulation, states that based on studies in the early 90’s, more than 80% of people with CVS also have hypercoagulation of the blood.
    They state this is an immune response to any number of causes and it “forgets”to switch off.this causes an accumulation of fibrin in the blood, and the cause of CFS in these people. (From LDN for Fibro blog ,barbara lochner:she also took nattokinase and was breathing much better and had more stamina)
    Hemex Lab does a (classiclal) blood test for fibrin level.but dark field microscopy is so much more dramatic!
    Wsix months. On my next visit to my endocrinologist my blood image was quite normal. I continue with 1 capsule instead of 2.
    My myofascial pains remained but the shortness of breath is much better.
    Then I remembered reading something about fibrin and CVS and looked it up:
    ..in the book Encyclopedia of Medical Breakthroughs & Forbidden treatments Page 100, under the heading of Hypercoagulation, states that based on studies in the early 90’s, more than 80% of people with CVS also have hypercoagulation of the blood.
    They state this is an immune response to any number of causes and it “forgets”to switch off.this causes an accumulation of fibrin in the blood, and the cause of CFS in these people. (From LDN for Fibro blog ,barbara lochner:she also took nattokinase and was breathing much better and had more stamina)
    Hemex Lab does a (classiclal) blood test for fibrin level.but dark field microscopy is so much more dramatic!

    Verstuurd vanaf mijn iPad

    • Issie

      January 4, 2018 at 4:58 pm - Reply

      I’m using Lumberkinaise to thin blood and break up fibrin. It also breaks up biofilm. Then as it breaks up, what is in it can be detected and eliminated. I’m using herbs to help with that. There is dark field proof of this working for those detected with what was called Protomyxzoa Rehumatica.

      Interesting on the staph. MARCONS is an antibiotic resistant staph found in the sinus. But my doc says it will be every where in the body. Very hard to get rid of. My mom had it and me, my sis and her son. What are you doing to tame it, Joyce?

      Issie

  • Joyce Dahlberg

    January 4, 2018 at 1:35 am - Reply

    All the above is true and it is really the staph aureus gram neg bacteria found in the water contamination. Just check aerogene bacteria it is totally all the ingredients listed including immune suppression, proteins, sugars, osap A, pigments (as in morgellon), parasisteThe worst part is that people are passing to each other without any insects too. SO of course it will be in families. In addition it is very contagious and it is an opportunistic bacteria. Lyme from any biting insect (including mosquito) is just a result of the pandemic of the water contamination. This bacteria was first thought to be a virus (in animals and humans) but accidently discovered to be a bacteria in 1989. Beginning 1990 or 1991 the Lyme (bacteria)testing was changed and all neurological features were eliminated. Yes CFS, Lupus, Alzheimer, MS , cancers and and many others. How do I know . I have a disease that started from my husband (his entire family too) from a staph infection on his leg. This happened decades ago and my misery started 3 decades later. My kids are infected too as born with this very slow growing bacteria. Yes grand kids too. Kids are born with a very weak immune system and getting autism an many other issues. Vaccination just add fuel to the fire. Totally no expensive test needed. People who have chronic low body temp is all that is needed as indicative of chronic infection. Yes thyroid can cause it too but that means it is already in the organs. Low temp happens even before that.

  • Tracy

    January 4, 2018 at 4:20 pm - Reply

    If you replace the word CFS with Lyme – then you are explaining my son to a tee. I just took him to a hematologist because I swear his issues are ultimately related to coagulation issues. He was also asking for oxygen for months. Last time we were in the hospital he asked for oxygen for his constant severe headache and we were told they don’t use oxygen in hospitals. Seriously. I am printing out this article and carrying it with me as I drag my son from dr to dr begging for someone to help him.

  • HOPE

    January 4, 2018 at 8:12 pm - Reply

    Issie, Joyce

    This is very interesting as I too have very low temperature when having an infection that has lead to sepsis. I’m also taking clopidogrel which is an anti platelet. Staph infection?

  • HOPE

    January 4, 2018 at 9:44 pm - Reply

    Re staph infection, I’ve noted aero genes bacteria – and TTP-HUS which is linked to Quinine allergy causing multi systemic diseases with symptoms very similar to sepsis. This would fit with my quinine allergy and the E coli infection that caused a UTI and symptoms very much like sepsis. The TIA blood tests also revealed a low white cell count when I had a throat infection at the same time. MRI Brain results unknown.

    I hope this may be of interest to you.

    • Issie

      January 4, 2018 at 11:01 pm - Reply

      Hope, I had a TIA too. That’s what sent me on the journey of trying to figure out the complexities – they found a brain tumor and me having POTS, MCAS and EDS. Mayo is a great diagnostic place (but unreal expensive – thank goodness for insurance). They also discovered Hypogammaglobulinemia also my low ability to fight things. Dr. GOODMAN, at Mayo (we call him the POTS Doc) said many of us POTSies will not show up infections or autoimmune issues when they are definitely there. Then when the autoimmune system starts to working better – things ( Sjogren’s and lupus and Lyme) may show positive.

      Issie

      • chrisB

        January 5, 2018 at 6:08 pm - Reply

        Issie, in relation to staph:
        a year ago, during a roundtrip of a week in the south of france (hot) ,and for hours sitting in a bus my lower legs got very swollen ,skin very red and inflamed. Home again the swelling disappeared , but the itchy redness remained even after treatment with a classic cream against eczema. But GLADSKIN has a cream against eczema that targets only harmful staph aureus bacteria with an enzyme (endolysin) produced by bacteriophages. After a week the
        redness and itch desappeared and did’nt come back.
        Recently, my son (FM/ME too) had a reddish swelling just next to a mother macula on his arm. To exclude melanoma he had it examined. It appeared to be a Staph infection. Antibiotica did not help ; after applying the gladskin eczema cream it went away.,, but I suppose it will be difficult to apply this cream in your sinuses .

  • HOPE

    January 5, 2018 at 10:35 am - Reply

    Thanks Issie. UK based so no hope for correct diagnosis and can’t afford Mayo. Sjogren’s has been mentioned to me but 2nd test not completed. It’s such a nightmare getting the correct diagnosis and I seem to fit so many different conditions, all with most but not all symptoms, which is to be expected. I also have OI (a similar symptom to POTS). I was told that my condition is very rare. My age is against me for diagnosis. We are being encouraged to look for our symptoms on the internet and try to treat ourselves, but with chronic complex diseases and research not yet caught up, it makes it difficult and much guess work involved. Can’t treat what we don’t know and silly as we end up in A&E – very costly and risky. Roll on technology!

  • SL

    January 5, 2018 at 6:45 pm - Reply

    Hi Cort,
    Thanks for a very informative and interesting post. For me, this is the missing link!
    My illness debuted 2.5 years ago and I still have not been able to get a relevant medical diagnosis. It started with severe pneumonia which led to hospitalization. Due to several mistakes at the hospital, which included too little and too late administration of iv antibiotics, my condition evolved into sepsis. Actually I was sent home too early, developed sepsis and had to return to the hospital. (They didn’t tell me I had sepsis at that time, but I found out later when I studied the medical logs…)
    After I had improved somewhat, I was again “dismissed” from the hospital and reassured that I would recover in a couple of weeks. However, that didn’t occur. Instead typical symptoms of chronical infection or ME, started to develop. As many other patients, I have battled my way through the health care system and was able to exclude some diseases. Some doctors who did not know better, said that the cause was panic anxiety, depression or hypocondria, which really didn’t help at all. I also spent almost a year fighting possible bacterial infections, which gave some improvement, but nowhere near remission.
    Seems like ME is the only reasonable explanation. In my case, it could have been triggered and ignited by pneumonia and sepsis, which would be consistent with your hypothesis. It would be interesting to find out how many sepsis victims also developed symtoms consistent with ME.

    Also, it would be interesting to see how many people are suffering and dying as a consequence of overly conservative use of antibiotics in severe bacterial infections like pneumonia and sepsis. (Too late, too little, too weak substance etc).

    • Cort Johnson

      January 24, 2018 at 7:04 pm - Reply

      So apt a story SL.

  • Francis Martin

    January 5, 2018 at 9:12 pm - Reply

    Hi, re T-cell autoimmunity, there’s a 2014 study in Nature Communications on turning off T-cell autoimmunity. Google “autoimmunity turning off Bristol University”. Also, Mark Davis’s presentation at the OMF symposium showed activation of T-cell; Davis’s group have developed a method of identifying the T-cell target. Therefore, if it’s not T-cell autoimmunity then identifying the T-cell target may be beneficial e.g. to help to identify the pathogen etc. Interesting T-cell activation is found in Lyme, MS (to name two). So it seems like some of the tools may now be in place. We need funding e.g. European Commission has funded Lyme for 40 million euros (in last 10 years) and nothing for ME/CFS. Written on my phone so may be mistakes.

  • G

    January 7, 2018 at 11:43 pm - Reply

    I believe Sarah Myhill, a UK CFS specialist said that adding mega doses of Vitamin C to the treatmetnt of sepsis patients brought the death rate down considerably.

  • John

    January 26, 2018 at 8:44 pm - Reply

    Wow, now we can add sepsis to the list of connections. I wasn’t aware of this one and thought I was well read. Although the research into ME may be frustrated, at least we can say it’s an intriguing journey somewhat like a mystery novel. However, I’m ready for the book to end. I go before a disability judge in March and can only hope he has done his homework. When will the “test” be forthcoming? From what I’ve read, we’ve had 3 or 4 different and definite biomarker pathways for some time now.

  • Aidan

    January 27, 2018 at 12:02 pm - Reply

    Multiple copies of the Tryptase Gene testing will be available soon from Houston area lab found by the NIH/NIAID 30% of the population does not have the tryptase gene at all I know

    now I have the gene I had the test in blood for tryptase. The illness will be called TRYPTASEMIA. Even if one runs a blood test now for tryptase & it comes back Normal at 10

    anything above 8 is indicative to this Team as multiple copies of tryptase Genes…Run a simple blood test for tryptase if you have No tryptase then your diagnosis of CFS/ME Fibro so-called Lyme Antibodies not a disease or Mold fanatics you do not have these Labels…As far as Bell

    is concerned I stopped listening to him a long time ago he is just another patient with am MD degree he has the illness so does his Sister & Son to me he is not some kind of world researcher. NIH/NIAID Team are finding 2, 3 & 4 copies of Tryptase Genes it is also involved in the other Label illness called Ehlers-Danlos Syndrome type the worse ones have numerous copies TRYPTASEMIA

    • Francis Martin

      January 27, 2018 at 12:15 pm - Reply

      I happened to watch the video Ron Davis posted on 20th December 2017. He says that they hope to publish data re genetic mutations in ME/CFS “in the next year” i.e. 2018. Apparently they have some data which indicates that some genes turn up with high frequency but they want to do a proper study.

      • Cort Johnson

        January 27, 2018 at 5:51 pm - Reply

        Yes -some gene polymorphisms popped up with astounding consistency in the severely ill patients. How much of a difference they make is a big question – Ron is always talking about “artifacts” but the preliminary work is promising.

        • Francis Martin

          January 27, 2018 at 6:01 pm - Reply

          Thanks.

          Hopefully we wont have to wait too long for the data/publication.

  • MC

    March 22, 2018 at 6:21 am - Reply

    Hey Cort
    I have been following this type of research for awhile now – purinergic signalling and over-abundance of eATP. This particular study aligns to the sepsis study in 2014 where suramin and apyrase were compared/contrasted to slow sepsis in a mouse model. I agree, ME/CFS is a type of chronic sepsis. I’m hoping it will bear out in Dr Nav’s study.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5546305/
    https://www.nature.com/articles/cddis201470
    Cheers,
    MC

    • Cort Johnson

      March 31, 2018 at 12:54 am - Reply

      Thanks MC for the links. I had no idea 🙂

  • Joyce Dahlberg

    April 3, 2018 at 8:21 pm - Reply

    This sure sounds like millions have been saying and experiencing. People with untreated infections such as Lyme or complex lyme syndrome. Well I learned so much and researched it all based on my own symptoms. I have a current infection of western blot #31, #34 and #41. . CDC does not accept 31 and 34 because it is staph aureus bacteria. Yes you are reading this right. #31 is fungal but #34 is very fungal. these 2 numbers go together as 34 is a later developing infection (prefers the lung and brain due to oxygen concentration. I also have #30 , 45 and 41 as a previous ?ongoing ? infection. # 30 is a European strain and possibly California strain. . I had the BCG vaccine and got osteomyelitis as a child. #41 which I have for both IgG (previous) and IgM (current) is the tail of those (and most likely other) bacteria. That nr is also not considered by CDC as it occurs in persons with dental spirochetes (like I and million others). The need for periodontal reflects the trned and the millions infected too with more or less E coli bacteria. Names change to fool people. They call it enterobacteria first, then pseudomona aeruginosa, then it is staphyloccus aureus coagulase production and catalase +. Yes it uses glucose fro fermentation to produce lactid acid. Anyways BCG vaccines were given to millions and still being used. We have been injecting E.coli and still are. This staph aureus bacteria is very ambiguous and yes the fungal gets deposited all over. Yes I also have a rare acquired blood disorder in all cells. The bacteria is not visible under regular means and can be seen though more specialized means but of course not recognized or suggested to be used. The spirochetes are so smart and will use iron to escape the abx or when under stress (can even be a surgery, car accident, all not necessarily mental stress) Any fight or flight response will result in growing/expanding. The bacteria becomes a systemic infection and yes references to red checks has already been made as it is a form of inflammation. I had so much tiredness that I never bothered mentioning it again because nobody would listen/believe anyways. Even now being treated my tiredness gets overwhelming especially when herxing which is almost every day. Lyme activiists have been trying to say that Lyme untreated or too short of treatment leads to post septic type symptoms. How can it not the body is totally depleted of all energy. Finally NO I was not infected by a tick but by a person (boyfriend) later husband. I would never imagine that 37 years later after having had an ear infection and a sore lung would result in so much neurological issues (psych, skin issue). So now with a chlamydophila C pneumonia, epiglottits as a 2nd infection due to untreated pneumonia and antithrombin III deficiency I am still labeled nuts because the system is set up to deny the existence of millions infected. Yes I used to have red cheeks , they are quite pale now and yes I passed on this bacteria to my kids as it was passed on to me. My kids are ensuring that this bacteria will continue on it’s path to survival of the fittest because the grandkids have it too. It runs in families (as expected) and totally no tick bite/insect bite needed. So vaccinations started a hell of a road for millions to supply patients to doctors. 80% of antibiotics are used for animals which we eat and resistance is blamed on usage of those on people. Now that add it is in your genes to calm the masses. People believe what is fed to them too.

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