You are here: Simmaron ResearchImmune SystemDid a Multiple Sclerosis Study Give Us Clues About ME/CFS and Fibromyalgia?

Did a Multiple Sclerosis Study Give Us Clues About ME/CFS and Fibromyalgia?

Why should a blog focused on chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) be interested in multiple sclerosis? Because some distinct similarities exist between the three diseases, and when diseases like ME/CFS and FM aren’t getting much research, sometimes it pays to pay attention to diseases that are. You never know what insights might open up.

MS and ME/CFS

A recent study indicated that ME/CFS was more functionally disabling than multiple sclerosis

For the record, while multiple sclerosis is not as disabling as ME/CFS (yes – studies indicate that ME/CFS is more disabling than MS), MS is considered one of the most fatiguing diseases known.  (Dr. Light’s study actually found more fatigue in MS but much less post-exertional malaise ME/CFS.)

A “Fatigue” Disorder No More? – What Multiple Sclerosis Taught Us About Fatigue and Chronic Fatigue Syndrome

Additionally, MS like ME/CFS and FM, mostly strikes women in mid-life. Plus, having mononucleosis/glandular fever increases the risk of coming down with either ME/CFS or MS and one suspects, FM as well.  Infections often trigger relapses in both MS and ME/CFS. Pregnancy also often brings a respite for women with either MS or ME/CFS (often unfortunately followed by a relapse.) Central nervous system involvement is present in all three diseases. In fact, Simmaron’s spinal fluid study found similar levels of immune dysregulation in ME/CFS and multiple sclerosis.

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

A New Multiple Sclerosis Study Breaks Through

Proc Natl Acad Sci U S A. 2018 Feb 13;115(7):E1520-E1529. doi: 10.1073/pnas.1710401115. Epub 2018 Jan 29.Male-specific IL-33 expression regulates sex-dimorphic EAE susceptibility. Russi AE1, Ebel ME1, Yang Y1, Brown MA2.

A new MS study highlights a vital aspect of medical research – an animal model – that both chronic fatigue syndrome and fibromyalgia lack. It illuminates how researchers can use animal models to crack complex medical mysteries.  Tantalizing leads are present in both FM and ME/CFS but no one has been able to meld them into a bonafide breakthrough. That appears to have happened in MS.

Let’s see what happens in a well-studied, well-funded disease. As a bonus we’ll see that the hopeful breakthrough in MS could even have relevance to ME/CFS and FM.

One of the huge questions facing ME/CFS, fibromyalgia, MS and many autoimmune diseases is why so many more women than men get ill. Women don’t just get more autoimmune diseases, they tend to get them earlier than men and tend to have more severe cases.  No one knows why but researchers have been scratching around a possible answer for at least a decade.

The gender divide in MS has been well explored. The fact that puberty sparks an increase in MS incidence in females suggests a strong hormonal component is present.  A 2015 review agreed that sex hormones probably play a major role. Another noted that the autoimmune component of MS is greatly increased in women.

A Serendipitous Mistake Sparks a Major Finding

mouse animal study

A mistake in differentiating male from female mice led to a major discovery.

As so often happens in research, a serendipitous mistake sparked this discovery.  It began when a Northwestern University graduate student accidentally used a male mouse instead of a female mouse in an experiment. (Female mice are apparently hard to distinguish from male mice.) The researchers were using female mice to find genetic mutations that could help prevent the progression of MS – a female dominated disease.

When they ran the experiment they found, to their great surprise, that the genetic mutation that was protective in female mice actually made things worse for the male mice. (Talk about a gender divide.) Digging deeper, the team found that the genetic mutation in male mice blocked the activity of immune cells (ILC2) that are protective against multiple sclerosis in female mice. These cells halt the production of TH17 T-cells that initiate the attack on the myelin sheaths of neurons in MS.

Mast Cells Make Good

Mast cells are usually associated with allergic responses and in ME/CFS/FM with a condition called mast cell activation syndrome (MCAS) but this study revealed that mast cells can have a protective side as well.

Testosterone

A male hormone, testosterone, then reared its head.  In men testosterone triggers mast cells to produce a substance called IL-33 which stops the production of the TH17 cells in their tracks.  In fact, when the Northwestern University researchers removed the mast cells from the male mice their neurons came under attack and they developed mouse MS.  In the presence of testosterone, then, mast cells are a very nice thing to have.

testosteron

Testosterone levels could possibly could help explain the gender divide in MS as well as ME/CFS and FM.

Female mice, which have seven to eight times less testosterone than male mice, don’t produce enough testosterone to induce their mast cells to produce IL-33. Instead, female mast cells produce cytokines which increase inflammation and the TH17 T-cells that have been fingered in MS.

Testosterone has been on MS researchers’ radar for quite some time. A recent review of hormonal related changes in MS asserted that there is “compelling evidence that estrogen, progesterone, and testosterone control MS pathology by influencing immune responses and by contributing to repair mechanisms in the nervous system”.

Testosterone levels that drop as men age track with an increased incidence of MS in later life. (Interestingly the men who do get MS tend to have a tougher time with it than women.) Lower testosterone levels in men with multiple sclerosis are also associated with greater disability.  Some similar findings have been found in women. Women with MS tend to have lower testosterone levels, and increased lesions were associated with reduced testosterone levels in one study.

A very small clinical trial suggested testosterone supplementation might be able to increase white matter volume in the brains of men with MS.  If that finding is validated in larger studies, testosterone might be the first substance found that can reverse some of nervous system damage found in MS.

Testosterone, ME/CFS and FM

Testosterone levels could possibly could help explain the gender divide in MS as well as ME/CFS and FM.

A few studies have implicated testosterone in two other gender-imbalanced diseases – chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM).

Two studies have found low levels of testosterone in fibromyalgia, and testosterone levels have strongly been linked to pain sensitivity in animal models. One recent study suggested that lower levels of testosterone in combination with other factors was associated with increased rates of depression and poorer sexual functioning in FM. Recently, Jarred Younger’s small “good-day, bad-day” FM study found that lower levels of two hormones, testosterone and progesterone, were associated with more severe FM symptoms.

Fibromyalgia – the Testosterone Connection

Despite concerns about the use of testosterone in women, White found that a 28 day course of testosterone gel reduced pain significantly in women with FM. (More about that later.)

In ME/CFS Broderick’s modeling efforts suggest that testosterone in men is protective.  Plus the high rate of gynecological issues in ME/CFS and fibromyalgia suggest that sex hormones are involved in ME/CFS.

High Rates of Gynecological Disorders Implicated in Chronic Fatigue Syndrome and Fibromyalgia

Sex, Autoimmunity and Chronic Fatigue Syndrome … or Why More Women Than Men Get ME/CFS

Testosterone and Autoimmunity

No one knows if ME/CFS and FM are autoimmune diseases, but both could be and the link could have something to do with testosterone. The evidence that testosterone is protective against some autoimmune diseases is building.

Adding the gut contents of male mice to female mice (another mouse model) reduced their risk of type I diabetes – an autoimmune disease. Interestingly, the protective element again appeared to be testosterone, the levels of which were highly influenced by the composition of the mice gut flora.

Declining testosterone levels in men as they age increases their risk for rheumatoid arthritis. Declining testosterone levels may also be responsible for the gender parity seen in RA by age 75, and could explain why men tend to get multiple sclerosis at a later age than women. Low androgen levels in both men and women also appear to put them at risk for autoimmune disorders.

The gender divide extends to opioid use. Regular opioid use suppresses testosterone in men but not in women.

A TH17 Connection

ME/CFS may share another connection with multiple sclerosis – a deranged TH17 response. TH17 T-cells defend against extracellular pathogens and have been found to play a significant role in the development of inflammatory and autoimmune disorders. TH17 cells appear to help initiate attack on the neuronal sheaths in MS.

Several studies from Dr. Klimas’s group suggest a TH17 associated process may be in play in ME/CFS.  Exercise provoked a Th17 response  in both ME/CFS and Gulf War Syndrome patients.  Broderick’s modeling effort found that as few as five cytokines associated with TH17 activation could identify approximately 80% of ME/CFS patients with an infectious trigger. TH17 cytokines showed up again prominently in Broderick’s network analysis study which found they functioned as “preprogrammed immune component”.

Treatment

The question now is how induce a testosterone-like response in women without actually using testosterone. Drug studies suggest that testosterone can be helpful in MS but the study authors stated that women can’t take much of it without becoming masculinized and experiencing other significant side effects.

Instead this new MS study’s importance lies in the discovery of a key cytokine (IL-33) that can apparently turn off the destructive nerve processes in MS and even restore the nerves. If researchers can develop a way to promote IL-33 activity without using testosterone in women, they may have gotten a handle not just on MS but possibly on other gender imbalanced autoimmune diseases as well.

A New Approach to Autoimmunity?

The authors were quick to suggest that the findings may apply to other autoimmune diseases as well and could ultimately signal an entirely new approach to them. That’s welcome news given the harsh side effects of many of the immune suppressants used in autoimmune diseases.

“This suggests a mechanism for the reduced incidence of multiple sclerosis and other autoimmune diseases in males compared to females. These findings could lead to an entirely new kind of therapy for MS, which we greatly need.” Melissa Brown, PhD.

Perhaps it will lead to new direction in research for ME/CFS or FM.

Print Friendly, PDF & Email

36 Comments

  • aquafit

    March 19, 2018 at 4:09 pm - Reply

    Dr. Peter Rowe confirmed to me at the Ft. Lauderdale 2016 conference that the largest ME/CFS cohorts are menopausal women and boys going through puberty. We don’t notice the boys going through puberty because within 1-2 years their suffering is alleviated once their hormones get into balance.

    Personally, I can say that ME/CFS is not “solved” by this or that hormone. I’ve had it all my life as what I believe is a connective tissue disorder and it is greatly exacerbated by out of whack hormones. So, yes, during puberty, post pregnancy and perimenopause my symptoms became almost unbearable. However, this condition has limited my life in many ways. Hormones are but one trigger of unbearable symptoms. Petrochemicals, viruses, infections and extreme temperatures are others.

    • Cort Johnson

      March 19, 2018 at 6:11 pm - Reply

      I agree. I don’t think one hormone is going to solve ME/CFS. I think it could be part of the solution but I would be surprised of it would solve it.

  • Linda Reed

    March 19, 2018 at 5:02 pm - Reply

    Kudos to another well written report; food for thought, and follow-up. The depth and breadth of your articles continues to amaze me. So many researchers, so many theories. Whether we agree or disagree is of little consequence. What matters is that we know and are kept abreast of action taking place. For those of us lifers in this malady, this continues to provide an opportunity to participate, keep our foggy brains active, and be elder/veterans not victims.

    Keep up the good work!

    • Cort Johnson

      March 19, 2018 at 6:05 pm - Reply

      Thanks Linda! These articles definitely keep my foggy brain active..:)

      • Francis Martin

        March 19, 2018 at 9:21 pm - Reply

        Hi,
        news has been dominated by a reported breakthrough in the treatment of MS. I’ve taken a few extracts from the BBC report; see below*.

        I thought this was the link i.e. between MS and ME/CFS.

        I assume that MS is a B-cell autoimmune disease and that wiping your B-cells, and re-programming your immune system (stem cells), means that you loose your autoimmune B-cells. Fluge and others (rituximab) showed that ME/CFS is, in general, not a B-cell autoimmune disease.

        Mark Davis demonstrated T-cell clonal expansion in that MS and ME/CFS; i.e. evidence that T-cell autoimmunity plays a role in these diseases [OMF symposium September 2017 – Youtube (13 minutes ish)]. So maybe there are some similarities in MS and ME/CFS and therefore lessons from MS which can be used in ME/CFS.

        Jonas Bergquist has been funded by OMF to do a steroid study in ME/CFS [OMF – News – Experts Blog]. I assume that the study is now underway. This might help to understand the role of hormones in ME/CFS.

        As usual nothing seems straightforward in ME/CFS. If you have MS which responds to chemotherapy/stem cells then things are looking up.

        *Extracts from the BBS reports on the MS Breakthrough:
        “Doctors say a stem cell transplant could be a “game changer” for many patients with multiple sclerosis.

        Results from an international trial show that it was able to stop the disease and improve symptoms.

        It involves wiping out a patient’s immune system using cancer drugs and then rebooting it with a stem cell transplant.

        Just over 100 patients took part in the trial, in hospitals in Chicago, Sheffield, Uppsala in Sweden and Sao Paulo in Brazil.

        The interim results were released at the annual meeting of the European Society for Bone and Marrow Transplantation in Lisbon.

        The patients received either haematopoietic stem cell transplantation (HSCT) or drug treatment.

        After one year, only one relapse occurred among the stem cell group compared with 39 in the drug group.

        After an average follow-up of three years, the transplants had failed in three out of 52 patients (6%), compared with 30 of 50 (60%) in the control group.

        Those in the transplant group experienced a reduction in disability, whereas symptoms worsened in the drug group.

        Prof Richard Burt, lead investigator, Northwestern University Chicago, told me: “The data is stunningly in favour of transplant against the best available drugs – the neurological community has been sceptical about this treatment, but these results will change that.””

        • Jane Mostowitz

          March 19, 2018 at 10:26 pm - Reply

          Wow Francis I hadn’t heard about that study. I’ve always said that stem cells could probably get rid of most immune system disorders. I also think that illnesses in my previous post or all DNA related with slight anomalies causing differences and symptomatology. I I wish there would be a study of all patients diagnosed with these illnesses and their thoughts on how they’re related

  • Jane Mostowitz

    March 19, 2018 at 7:12 pm - Reply

    When will the powers-that-be realize that the seven subsets of chronic fatigue syndrome include: fibromyalgia
    multiple sclerosis
    chronic fatigue syndrome
    lupus
    muscular dystrophy
    myalgic encephalomyelitis
    & another immune disorder

    Sometime and I believe the 90s there was a study which determined theCFIDS otherwise known as chronic fatigue immune disorder syndrome. No one ever followed that up with a big study. Maybe now DNA is involved in a separate strand has been found this will happen. If all the powers that be of each major organization related to these illnesses would get together for research we might find the cause and cure for all. Most immune disorder patients with these illnesses know this to be true. However all we can do for now is create a new normal for our lives can do is know create a new normal in our lives. Wishes for a wonderful 2018 and the rest of your lives,

    Jane Mostowitz
    President
    Houston Chronic Fatigue Syndrome Association

  • Kristi

    March 19, 2018 at 7:27 pm - Reply

    I sure wish these articles ended with something other than “we need to do more research.”
    I’ve heard this for 25 years, and it is really getting old.

    • Cort Johnson

      March 19, 2018 at 9:10 pm - Reply

      Agreed!

      • Jane Mostowitz

        March 19, 2018 at 9:12 pm - Reply

        Agreed

    • Cynthia

      March 20, 2018 at 3:18 am - Reply

      And I’M getting old!!

  • Sara

    March 19, 2018 at 10:08 pm - Reply

    I’ve been suffering since 1995 at age 26 and I’m now 48…how I pray for a treatment for the constant, non-ending fatigue. I haven’t felt rested since high school but this at least gives me hope!! Here in KC there are no specialists so I’m on my own trying to navigate supplements, etc. Thank you for the information!!!

    • Jane Mostowitz

      March 20, 2018 at 11:09 pm - Reply

      Sure I’m not sure if you have MS CSS or fibro or all of the above LOL. With any disease or illness please be careful and do your due diligence before starting an e supplements, treatments, Etc. Some work some don’t everything is individual basis. There’s tons of scams saying they have a cure to your disease. It’s now been proven true CFS patients have a different genome in our DNA. How’s it, other diseases, and people with the symptom chronic fatigue do not have this genome. Thank godness there’s a blood test now giving a definitive fibromyalgia diagnosis. The Japanese are working CFS blood test. It’s possible you may be able to get distance treatment via teledoctor now. I’m not sure what specialist in are doing it but you might research. I believe there is one close to your state but I’m not sure who maybe someone on the site will read this and let us know. The only immune system physician in Houston to understand msnd chronic fatigue syndrome fibromyalgia lupus Etc is dr. Patricia salvato Diversified medical practices. It’s a Cattle Mill just like MD Anderson for cancer but she’s awesome at Diagnostics. Many people are improperly diagnosed with immune disorders. They’re told they have chronic fatigue syndrome that they actually have chronic fatigue as a symptom. She weaves through the diagnosis and gives you a tentative answer. If you do decide to come to Houston after researching her I would be happy to let you stay at my home and take you there. Give me about a month’s notice to change appointment my appointments if it’s conflicting. My contact information is on Facebook under Houston CFS or cfids Association. I read that you started symptomatology in high school. I would suggest doing chronological symptoms from birth allergies gastrointestinal issues etc etc you might have had it from birth and not known it since it is genetic. There are proven studies that another illness like mono encourages the disease of chronic fatigue syndrome to come to the Forefront. The symptom ology also helps whatever doctor you have to discern if it might be another illness they haven’t tested for. Good luck and I look forward to hearing from you via regular contact information. James Houston chronic fatigue syndrome Association president

    • Jane Mostowitz

      March 20, 2018 at 11:26 pm - Reply

      Sarah I forgot this information. I looked at the Social Security disability guidelines for chronic fatigue syndrome and fibromyalgia, printed, looks nice family practice doctor in the eye and said “Physicians believe chronic fatigue syndrome and fibromyalgia or psychosomatic.” From my history and workups would you agree I have these diseases? Yes, then make me an appointment with Salvato for a definitive diagnosis and another work up. He said she does the best disability letter for Social Security ever. If your doctors haven’t already ruled everything out to give you that diagnosis including testing NK (natural killer cells), every thyroid, and other suggested blood work for these diseases you should ask. most specialist will speak to your doctor on the phone if your doctor is willing to call and send your records for review. It takes a couple of months but it will happen. If you go to solvecfs.org I believe they have a International and Nationwide list of CFS Physicians. There’s also a family and friends section withheld with understanding the disease. Great website. Again I wish you luck contact me if you like.

  • Nina

    March 20, 2018 at 10:34 am - Reply

    I think that ME-CFS (and MS, Autism etc.) happens in the gut – at least for a subgroup of patients. Due to an altered microbiom and inflammation the gut becomes leaky, causing undigested food particles, toxic waste products and bacteria to “leak” through the intestines and flood the blood stream. The foreign substances entering the blood can cause an autoimmune response. I also think that the brain-blood-barrier is damaged in patients (maybe even through the altered gut microbiom?), allowing the particles to reach the brain causing inflamation there too. This causes all the typical immune symptoms we have. On top of that the damaged microbiom is not able to absorb essential nutrients from food or to produce vital enzymes, vitamines etc. as it normaly does. This causes malnutrition which leads to different symptoms and malfunctioning of the body – e.g. to hormone imbalance. The great article above (Thank you Cort! Excellent as your articles always are!) also states that testosterone levels are dependend on the gut microbiome. Maybe at the end we might learn not to use heavy chemicals and medication to stop the functioning of procedures somewhere in the body that have gone beserk, but which are not the root or cause of the illness. Instead we will maybe find out that to heal the gut, reestablish the damaged microbiom will heal us. We do not know much about the microbiom yet, but studies are on the way and we learn more and more. We know already though that there are different causes leading to an altered microbiom: antibiotics of cause but also hormones like the pill (or stopping the intake), heavy metals, pesticides, vaccins (GWI) etc. I am very much looking forward to the results of a great study in Norway which is testing stool transplants on me/cfs patients. Keep fingers crossed!

    • Cort Johnson

      March 20, 2018 at 4:22 pm - Reply

      I agree that for some people the gut must play a major role…Looking forward to that Hanson fecal transplant study as well 🙂

      • Nina

        March 20, 2018 at 4:41 pm - Reply

        🙂 of cause you do know Cort! I am looking forward to your certainly great article about the Hanson study too. 🙂 Can’t wait, but gotta be patient for the results at the end of 2019 I think. Maybe we will know a bit more after the conference in London.
        I forgot to mention that of cause mold and bacterial infections like Guardia also cause alterations of the microbiom and gut inflammation. That rings many ME/CFS patient’s bells too.

  • Cjef

    March 20, 2018 at 2:06 pm - Reply

    Some more stuff on hormones and CFS just came out. See https://scienmag.com/chronic-fatigue-syndrome-possibly-explained-by-lower-levels-of-key-thyroid-hormones/

    • Cort Johnson

      March 20, 2018 at 4:21 pm - Reply

      Nice! Thanks for passing that on Cjef

  • dejurgen

    March 20, 2018 at 9:56 pm - Reply

    I’m still chewing on the uric acid thing. So another link between this research and uric acid ;-).

    http://www.jimmunol.org/content/187/11/5842.long
    “Although UA crystals have been linked with gout pathogenesis for more than a century, little was known about the immunological properties of this molecule until the last decade.”
    “Unexpectedly, we found that UA crystals alone are poor stimulators of any (Th1, Th2, or Th17) Th cell response. However, when coupled with NF-κB activation (which “primes” inflammasomes and drives the expression of IL-1 and IL-18 precursors), UA crystals potently induced Th17 responses.”

    So UA crystalls alone don’t set of an inflammatory cascade. But UA combined with NF-κB could do so.

    https://en.wikipedia.org/wiki/NF-%CE%BAB
    “NF-κB is found in almost all animal cell types and is involved in cellular responses to stimuli such as stress, cytokines, free radicals, heavy metals, ultraviolet irradiation, oxidized LDL, and bacterial or viral antigens.”

    => Could this potentially mean that pre-existing UA crystalls/problems + an initial onset like stress, …, heavy metals, …, and bacterial or viral antigens initiate a vicious circle by generating oxidative stress that is in that list too, sustaining the mechanism?

    Note septic shock in this list, some researchers see ME as similar to mild chronic septic shock: “NF-κB has been linked to cancer, inflammatory and autoimmune diseases, septic shock, viral infection, and improper immune development.”

  • dejurgen

    March 20, 2018 at 10:02 pm - Reply

    Note: previous comment did not get through; probably because it has a “bad” link with a Greek sign in it.

    I’m still chewing on the uric acid thing. So another link between this research and uric acid ;-).

    http://www.jimmunol.org/content/187/11/5842.long

    “Although UA crystals have been linked with gout pathogenesis for more than a century, little was known about the immunological properties of this molecule until the last decade.”
    “Unexpectedly, we found that UA crystals alone are poor stimulators of any (Th1, Th2, or Th17) Th cell response. However, when coupled with NF-κB activation (which “primes” inflammasomes and drives the expression of IL-1 and IL-18 precursors), UA crystals potently induced Th17 responses.”

    So UA crystalls alone don’t set of an inflammatory cascade. But UA combined with NF-κB could do so.

    wikipedia article link on “NF-κB”; link seems too be rejected by blog software

    “NF-κB is found in almost all animal cell types and is involved in cellular responses to stimuli such as stress, cytokines, free radicals, heavy metals, ultraviolet irradiation, oxidized LDL, and bacterial or viral antigens.”

    => Could this potentially mean that pre-existing UA crystalls/problems + an initial onset like stress, …, heavy metals, …, and bacterial or viral antigens initiate a vicious circle by generating oxidative stress that is in that list too, sustaining the mechanism?

    Note septic shock in this list, some researchers see ME as similar to mild chronic septic shock: “NF-κB has been linked to cancer, inflammatory and autoimmune diseases, septic shock, viral infection, and improper immune development.”

    • dejurgen

      March 20, 2018 at 10:31 pm - Reply

      The best link I could find so far between testosteron and this Th17/inflammation/oxidative stress thing is:

      https://www.sciencedirect.com/science/article/pii/S0167488904001831
      “Testosterone treatment decreased 40% of superoxide anion production”

      => So if there would be some sort of pre-existing uric acid problems plus initial onset that set of a vicious circle where oxidative stress takes (partly) over from the initial onset to maintain the vicious circle then testosterone could reduce the strength of this feedback by reducing an important element of the feedback loop: massive ROS production.

      There is also 1 link I found between NF-κB and testeron, but I couldn’t understand any of it, safe for the title.

      http://press.endocrine.org/doi/abs/10.1210/endo-meetings.2012.NRSH.10.SUN-579
      Testosterone Protects Cardiomyocytes from Superoxide Injury Via NF-kB Signaling Pathways

    • dejurgen

      March 20, 2018 at 10:34 pm - Reply

      Another comment reject. I try now breaking the hyperlink up

      The best link I could find so far between testosteron and this Th17/inflammation/oxidative stress thing is:

      https:\\www.sciencedirect.comscience\article\pii\S0167488904001831
      “Testosterone treatment decreased 40% of superoxide anion production”

      => So if there would be some sort of pre-existing uric acid problems plus initial onset that set of a vicious circle where oxidative stress takes (partly) over from the initial onset to maintain the vicious circle then testosterone could reduce the strength of this feedback by reducing an important element of the feedback loop: massive ROS production.

      There is also 1 link I found between NF-κB and testeron, but I couldn’t understand any of it, safe for the title.

      http:\\press.endocrine.org\doi\abs\10.1210\endo-meetings.2012.NRSH.10.SUN-579
      Testosterone Protects Cardiomyocytes from Superoxide Injury Via NF-kB Signaling Pathways

  • Greg

    March 21, 2018 at 12:30 am - Reply

    Does anyone have knowledge of any males improving with testosterone supplementation?

    • dejurgen

      March 21, 2018 at 10:37 am - Reply

      I visited a few times a CFS doctor with mixed reputation. Helped some people well, got some others worse. On the basis of a dodgy test he subscribed 4 hormone supplements that I was lacking. 1 of them was testosterone. The others were if I recall well aldosterone, hydrocortisone and thyroxine.

      It didn’t help me. When he later claimed I had improved a lot while I clearly said I got worse (I had to drop one med that did help me) he said I was wrong and said me too continue taking those. I did but still got worse. Next time again he told me I improved a lot / was nearly OK while I firmly disagreed. He then said I might lack one more expensive hormone and subscribed that. That’s when I walked away.

      I went to a reputable “conventional” endocrinologist professor who looked at my original test results and said they were all within normal. The one that indicated strong shortage was not recognized as a meaningful test. Then he subscribed a build down regime; stopping hormonal supplement therapy immediately can be very dangerous/fatal. Glad I’m off this stuff.

      So testosterone supplement did not help me, but my testosterone was within normal range.

  • Donna

    March 21, 2018 at 12:31 am - Reply

    Wow Nina,
    YOU hit it on the head, with all you say.
    We, my daughter and I got Guardia (20yrs ago) then given the drug FLagyl. (wiped out all our good bicrobiome, and all the bad bugs took over.. Wrecked our GUT, (leaky now) And that ruined our life. Started with CFS symptoms, but quickly turned into MCS (which you should add to your list), but because we lived in a high pesticide spraying area. We absorbed the chemicals. And got all sorts of conditions. You name it we got it. Pains , aches , liver, kidney problems,
    We moved in the end, BUT, have to eat a chemical free diet, stay away from man made smells and chemicals, to keep ALL the pain away.
    We went and had an FMT a year ago, and first had to take a drug to wipe out all the bad bugs in the colon VANCOMYOCINE , ,has got out bowels going again.
    But, we just can’t heal the gut. NOT from lack of trying though.. Tried the GAPS and Body Ecology diets ,to the best our sensitivities would allow, but nothing helps.
    Ours cells are just too saturated with chemicals, to allow the body to heal. I JUST GET SO ANGRY. It’s all the Antibiotics and chemicals in our world that is doing this to us ALL.
    Prof. Tom Borody, at The Center for Digsetives, in Sydney, where we had our FMT’s done, told us, that , the powers that be, knew this was going to happen, back when the first invented ANTIBIOTICS
    .They not only kill the bad, BUT, more importantly, they kill off the GOOD. And that is what starts all the immune problems. Makes our gut leaky, and the bad to grow, but, the chemicals to get into our organs and joints etc.
    And all these researches, just aren’t looking in the RIGHT place to fix the problem. They are just looking at symptoms and reactions, that different parts of our body are having, from all this stuff leaking in and proliferating .
    THE GUT and THE COLON, hold it all.
    If only some of these researchers would talk to some of these FUNCTIONAL MEDICINE DOTORS, you have over in the USA.
    Like Dr Jay Davidson, and Dr Daniel Nuzum. These men are healing people with Autoimmune problems
    . I wish we could afford to go over to them and be treated, they really same to understand what is happening in the body…

  • faf

    March 22, 2018 at 1:00 pm - Reply

    hi Cort, of all thank you thank you thank you. I am confused when talking about chronic fatigue and FM because the pain is different and level of energy is very different. Buth devastating and basically turned us to a living dead people. At least how I live. I have successfully been able to reach sleep with smoking pot and half a zolpidem that doctors in France do not provide. but I did not have chricic sleep, it case after FM.

  • faf

    March 22, 2018 at 1:02 pm - Reply

    hi Cort, thank you for you are a shinning star. I am confused when talking about chronic fatigue and FM because the pain is different and level of energy is very different. Buth devastating and basically turned us to a living dead people. At least how I live. I have successfully been able to reach sleep with smoking pot and half a zolpidem that doctors in France do not provide. but I did not have chricic sleep, it case after FM.

    • Cort Johnson

      March 31, 2018 at 12:53 am - Reply

      Thanks Faf! Hang in there. Dr. Bateman thinks the two diseases are on a pain and fatigue continium. Time will tell!

  • Francis Martin

    March 24, 2018 at 11:03 pm - Reply

    Hi, I happened to be searching on the web for multiple sclerosis and breakthrough. I noticed a paper looking at a protein called RAB32. It appears to be elevated and a potential drug candidate. On the face of it the discovery of underlying molecular mechanisms such as this could give an insight into inflammatory diseases in general. Sometimes a disease with well funded research can give insight into other diseases. One thing that jumped out was the researchers found a problem with calcium regulation; I think that has turned up in ME research. I’m a layperson so all of this could be nonsense. Written on my phone without proof reading; so please excuse the typos etc.

  • John

    April 8, 2018 at 9:38 pm - Reply

    At the 2017 Stanford ME/CFS symposium, I think it was Mario Capecchi who stressed the importance of developing an animal model for ME/CFS.

    • Cort Johnson

      April 12, 2018 at 12:34 am - Reply

      Yes he did – and he said he would help develop one as well.

  • Yvonne Andrews

    June 7, 2018 at 1:37 am - Reply

    I was having joints pain in both hands inside and outside and muscle weakness due to multiple sclerosis (MS). I was falling a lot, I had headaches and lightheadedness. I couldn’t keep myself balanced, and walk with a tremor like I cannot control my steps. The amantadine hydrochloride (Symmetrel®) and modafinil (Provigil®) did very little to help me. I still didn’t feel any better, Since the original diagnosis, My stiffness has slowly increased. October 2017 my brother in-law told us about Natural Herbal Gardens where he ordered herbs that effectively treated his Parkinson’s. We ordered their multiple sclerosis herbal treatment after reading alot of positive reviews, i am happy to report this multiple sclerosis herbal treatment reversed my (MS) condition. My quality of life has greatly improved and every one of my symptoms including muscle weakness and tremors are gone. Their official web official website is w w w. naturalherbalgardens. c o m. I can now go about my daily activities, I will be 64 soon.

    • Cort Johnson

      June 9, 2018 at 10:08 pm - Reply

      Congratulations and thanks for passing that on Yvonne.

  • Francis Martin

    June 11, 2018 at 8:52 pm - Reply

    This is a really interesting article.

    If you check out Neil McGregor’s talk at the 2017 OMF Community Symposium you’ll see that one of the snips (genetic mutations) which appear to turn up at higher frequency in ME/CFS relates to langerin.

    Possibly genetic studies may indicate immune cells which are implicated in ME/CFS and help to focus research.
    Here are a couple of extracts from Neil’s talk; you can get a transcript on he Melbourne University website:
    Langerin (Dendritic cell pathogen receptor).
    We found that Langerin snps were 3-fold more likely in ME/CFS …

    Unutmaz’s recent announcement at the Montreal ME/CFS Conference regarding another immune cell may also help to focus research.

    If you understand the disease mechanism in ME/CFS then you can look at potential diagnostic markers and treatment options.

  • Leave a Reply