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Study Suggests Hormones, Autoimmunity and/or Viruses at Work in ME/CFS

December 15, 2014

Age Patterns Provide Pointer

A Norwegian study of ME/CFS patient records that found two age peaks in Chronic Fatigue Syndrome, one starting from ages 10-19, the other from 30-39, could tell us something about the disorder.

Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008–2012   Inger Johanne Bakken1*, Kari Tveito2, Nina Gunnes1, Sara Ghaderi1, Camilla Stoltenberg1,3, Lill Trogstad1, Siri Eldevik Håberg1 and Per Magnus1 Bakken et al. BMC Medicine 2014, 12:167

mountain

ME/CFS can occur almost any time but two distinct age-related peaks showed up in a Norwegian study …What does it mean?

It wasn’t as if people of other ages didn’t come down with Chronic Fatigue Syndrome – many people in other age groups did – but the numbers of ME/CFS cases spiked in these age groups.

The least likely times to come down with ME/CFS were at the two ends of the age spectrum: from 5-9 and after the age of 55.

Just 121 cases were reported from ages 5-9, but after the age of nine the incidence of ME/CFS spiked up sharply with almost 700 cases reported from ages 10-14 and 15-19. From 20-29 it dropped about 30% with about 500 cases reported, and then zoomed up again to about 700 cases from ages 30-39. From ages 40-44, 45-49, 50-54 declined until at ages 55+ the incidence was very low indeed.

That’s in contrast to many disorders which get more prevalent as we age.

As in other surveys, young female and adult women in their most productive years were much more likely (75%) to come down with ME/CFS than men.

What does it all mean?

Females Dominate

The high rate of females with ME/CFS combined with the unusual pattern of incidence points a finger directly at female hormones.   Three periods of major hormonal fluctuations occur in women; during puberty, during pregnancy and during menopause. Spikes in ME/CFS incidence occurred during two of these; puberty and when women often get pregnant, but not during menopause.

Sex Hormones, ME/CFS and IBS

make-female

As expected females dominated

A CDC study indicating women with ME/CFS have greatly increased rates of gynecological disorders also suggested that sex hormones could play a major role in the disorder. Despite the female predominance in ME/CFS and FM sex hormones have not been well studied in either disorder, but they have been better studied in another female dominated disorder  that often co-occurrswith ME/CFS and Fibromyalgia – irritable bowel syndrome.

The same pattern of disease development over time is found in IBS. The incidence of IBS peaks in women from their teens to about their mid-forties and then declines over time. By the time women reach their seventies their incidence of IBS drops to that found in men.

Estrogen

Estrogen is the major female  hormone produced. Its many effects on the body and its widely varying production had made it difficult to  study, but Broderick’s ME/CFS model suggests that estrogen triggered dysregulation of the HPA axis may play a key role the development of Chronic Fatigue Syndrome in females.

That’s Low Estrogen – If estrogen plays a role it’s probably low not high estrogen levels that are the problem. Estrogen effects neurotransmitter production and activity and electrical excitability, and has a neuroprotective effect on central nervous system functioning.

estrogen

Estrogen has many effects on the body. It surely plays a role somewhere – but where?

Pain Connection – Some evidence suggests low estrogen level may play a role in chronic pain.  The greater degree of emotional arousal women with IBS display in response to pain could reflect reduced estrogen levels. The association of high estrogen levels with increased opioid receptors suggests higher estrogen levels may reduce pain.

Gut Connection – Female hormones not only influence gut motility – a key feature of IBS – but also gut secretions, gut contractions, immune functioning and pain sensitivity. The fact that about a third of women with IBS issues have them only during menstruation again suggests reduced sex hormone levels could play a role.  Reduced hormone levels during menstruation have been linked to abdominal pain and bloating.

Overall, the evidence suggests that estrogen probably plays a protective role in IBS, multiple sclerosis, pain disorders and possibly chronic fatigue syndrome.  However, the lower incidence of ME/CFS during menopause – when estrogen levels tend to be low – suggests that more than estrogen is  involved.

A Positive Role for Male Hormones

In contrast to women, age appears to play little role in the development of IBS in men:  they experience no significant changes in IBS incidence throughout their lifespan.

menstrual

IBS symptom flares in the premenstrual period implicate estrogen

Male hormones often get a bad rap :) but the lower rates of incidence and the lack of a discernible pattern of incidence in men suggests they may have a protective function. Broderick’s modeling studies suggest that male hormones such as testosterone are protective in ME/CFS and some evidence suggests the same may be true in IBS.

Testosterone also appears to have pain reducing properties that provide protection against the development of pain disorders.  Low testosterone levels in men, for instance, have been associated with increased sensitivity to rectal pain.  Some men with ME/CFS have find testosterone supplementation helpful.

Hormones, or the lack of them, may very well be a contributing  factor to getting ME/CFS, but the spikes in incidence also point a finger at two other factors: viruses and autoimmune disorders.

The Viral Connection – Epstein Barr Virus

Spike in Adolescence  – The increasingly late exposure to the Epstein-Barr virus found in the Western world could contribute to the spike in ME/CFS prevalence in adolescence.

Exposure to EBV in infancy, when cytotoxic T-cell levels are at their highest, is usually hardly noticed, but a first exposure to EBV in adolescence often results in a severe illness such as infectious mononucleosis/glandular fever  –  which appears to trigger ME/CFS in about ten percent  of patients.

gone-viral

The earlier age peak could, in part, reflect late EBV exposure

Spike in Middle Adulthood – Attributing the spike in ME/CFS prevalence in from 30-39 to EBV activation is a bit more difficult. Pregnancy in combination with the stress of child rearing could help explain it, however.

EBV reactivation in response to stress is well documented, but EBV reactivation also commonly occurs during pregnancy. One study found EBV reactivation in 35% of pregnant women by the second trimester and reactivation rates may be as high as 50% in pregnant women experiencing depression or high rates of stress.

Dramatic changes in estrogen,  progesterone and interestingly enough, cortisol – given Broderick’s model of ME/CFS – also occur during pregnancy.

Pregnancy is  also  associated with an increased risk of autoimmune disorders and the incidence of  MS increases in the first six  months after pregnancy.

Reductions in symptoms that often also occur in existing cases of ME/CFS and multiple sclerosis during pregnancy are believed to reflect spikes in estrogen.  (Anti-inflammatory cytokines that spike during pregnancy could play a role as well.)  Coming up shortly we’ll explore an estrogen targeting drug for MS that could possibly spell good news for people with ME/CFS and FM.

Set to Up to Fail? - Studies indicating that infectious mononucleosis increases the risk of coming down with multiple sclerosis later in life two-threefold raises the question whether a similar pattern might exist in chronic fatigue syndrome. Could a severe case of mononucleosis as a teenager set you up for getting ME/CFS several decades later?

Autoimmune Disorders

A similar age-related  incidence pattern is also found in some autoimmune disorders. Lupus is most commonly diagnosed between the ages of 15-35. Multiple sclerosis (MS) is most commonly diagnosed in people between the ages of 20 and 50 years.  Sjogren’s  Syndrome typically begins in the same “middle adult” years  that ME/CFS spikes are seen in.

Conclusion 

complex-issue

The age peaks may reflect a complex array of factors that coincide during certain periods to raise incidence levels.

The age spikes  found in this study  suggests chronic  fatigue syndrome shares  features with several other disorders.  Similar patterns of incidence in IBS, multiple  sclerosis, lupus and Sjogren’s Syndrome, and high rates of female predominance also occur in some autoimmune disorders (systemic lupus erythematosus (SLE; females:males – 9[ratio]1), autoimmune thyroid disease (8[ratio]1), scleroderma (5[ratio]1), rheumatoid arthritis (4[ratio]1) and multiple sclerosis (3[ratio]1)).

Determining what the spikes mean will  take time and much in the very complex interactions involving hormones and the immune system. The evidence suggests that a constellation of factors, perhaps involving hormones, immune activation, central nervous system excitation, and in some cases viruses play a role in producing ME/CFS.  This study highlights “danger points” when women may be particularly vulnerable.

The reduced incidence of ME/CFS and autoimmune and pain disorders in men, on the other hand, may reflect the protective effects male hormones provide.

Next Up – a possible breakthrough multiple sclerosis drug that affects estrogen activity. Could it have potential for ME/CFS?

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33 Comments

  • Donna

    December 16, 2014 at 9:14 pm - Reply

    I was 34 years old, and I’d just had my only child when I came down with all the symptoms. I thought it was post partum and physical exhaustion following pregnancy. I was under a great deal of stress with my marriage. The doctor I saw said it was “fight or flight”. I had also recently lost my mother and father and I’m an only child. I think something similar may have happened to my mother. I’m nearly 67 now, and if I am careful about not overdoing, I am better than ever since becoming sick so many years ago. I’m hoping I have a few years left to enjoy. I also have fibromyalgia and IBS. The most concerning thing for me at this point are the cognitive problems. Any advice would be so appreciated.

    • Cort Johnson

      December 16, 2014 at 10:38 pm - Reply

      I know of several people who had problems post-pregnancy. Estrogen goes up and then apparently plummets post-pregnancy – it would be in that period that the risk for ME/CFS might possibly go up. I don’t know if anyone has checked.

      • Donna

        December 16, 2014 at 10:54 pm - Reply

        Thanks Cort for quick response. I always trust what you say. Have a great Christmas!

  • Anna

    December 16, 2014 at 10:12 pm - Reply

    This was a really interesting research. I had a sever case of mononucleosis when I was a teenager. I was sick for about two years. Then during adulthood I also had much problems with my periods. During my early fifties or maybe late forties, I had a lot of stress, or extreme stress from work and very sick partens. I then started to develop ME/CFS and fibromyalgia and IBS. I can not work anymore because of this. I hope this research can be extended and continued.

  • ROBERTA

    December 16, 2014 at 10:33 pm - Reply

    I know not much about genetics, so excuse if my question is dumb… is there a chance this disease is related to X chromosomes – a recessive type, perhaps?

    • Cort Johnson

      December 16, 2014 at 10:36 pm - Reply

      I’ve wondered about that as well….I really don’t know but I imagine that it’s a possibility.

    • Nico

      December 26, 2015 at 6:43 pm - Reply

      Roberta, I’ve recently been working on my family tree… and in so doing found a 5th great grandmother whose cause of death was “debility”. Somehow it sounded familiar….

      • Nico

        December 26, 2015 at 7:00 pm - Reply

        PS: She was 51 when she died…. I can’t say for sure what she had was ME/CFS, but it just sounded “familiar”.

    • Kim & Kelly Derrick

      January 2, 2016 at 9:14 pm - Reply

      As I’ve already posted, my sister & I both have ME+FM and have had since we were babies. We’re also genealogy addicts. We think our maternal grandmother also had ME+FM, and probably, (like Kim) systemic CRPS. (Mine is in Stage 3 now. Kelly’s had several bouts of CRPS type 1 – the first at age 10.) We’re also pretty sure Grandma had Sjögren’s Syndrome, and we know she had Rheumatoid Arthritis (& osteo), so she probably had at least 3 autoimmune diseases. Mom has 4-5, and our Dad had 1-2. All this points to DNA mutations. Grandma became bedridden when she was 59 because of pain and fatigue. They blamed the RA, but we think it was also raging ME+FM+CRPS & SS. She died 10 years later when she was 69. We realized a few months ago that I became bedridden (ME+FM+sCRPSs3) when I was – yep, you guessed it – 59.

      Our 3rd great-grandfather on our maternal grandfather’s side (Grandma’s husband), was said to have suffered from severe fatigue. ME? He made two trips from Illinois to Utah (1847 & 1848) in a covered wagon. We don’t know when the fatigue started being a problem for him. I hope it was after 1848! .

      Kelly & I have been analyzing our DNA. We got tested at 23andMe about 10 years ago, when they were still able to provide interpretations. (The FDA has temporarily blocked 23andMe from providing interpretation. We thankfully had ours tested before the block.) Lately, we have also been using Dr. Amy Yasko’s website and SNPedia. (SNPedia gives links to two other places that will also provide interpretations for a modest fee.) We’ve found things that have proved vital to our medical care. Cort’s article, “Australian Study Pinpoints Possible Gene Issues in Chronic Fatigue Syndrome” (http://www.cortjohnson.org/?s=Australian+study) led me to the study that can be downloaded free here (http://www.la-press.com/examination-of-single-nucleotide-polymorphisms-snps-in-transient-recep-article-a4824) that gives the associated SNPs. I also did a search at PubMed and that same researcher has done several other studies of SNPs in CFS patients (http://www.ncbi.nlm.nih.gov/pubmed?term=(Sonya%20M.%20Marshall-Gradisnik)%20AND%20chronic%20fatigue%20syndrome). I will further analyze our DNA with the help of those studies.

      • Cort Johnson

        January 3, 2016 at 3:57 pm - Reply

        How interesting! Your family should be in a study! Thanks for passing that on and good luck with your analysis.

  • Geraldine O'sullivan-Hoga

    December 17, 2014 at 12:33 am - Reply

    The article mentions the high incidence of Irritable bowel syndrome in ME/CFS/FMS and the fact that some people only experience Irritable bowel during menstruation. The reality is that many women receive a diagnosis of Irritable bowel when in fact they are suffering from Endometriosis and continue to be labelled with it even after an Endometriosis diagnosis. I wish some researchers would explore the links between Endometriosis and ME/CFS/FMS..

    • Cort Johnson

      December 17, 2014 at 10:57 pm - Reply

      Interesting Geraldine didn’t know that but now that you mention it I’m not surprised. Thanks for passing that on.

  • jimmy

    December 17, 2014 at 4:41 am - Reply

    hmm is this disease heterogenus group or one disease? So many questions still un answered. I’m a male and had frequent bouts of viruses and colds that would not go away for 2 weeks at a time. My immune system was either faulty and I’m guessing genetic. Amyway the symptoms of the disease wwre there a a very young age. Over time it waxed and waned. I have white matter in the brain. Have the immune system tested and cytones showing sever pathology. Lost my aerobic capacity at 20 years old. Hmmm The last 13 years disabled. I kinda thought and was right that I would get cancer from this disease which I got 2 years ago kidney cancer. The cancer was no big deal they went in and cut it out. My heart rate stayed at 130 beats per minute for first 4 days in hospital. I knew I would survive cancer no big deal. The disease that caused it and has squashed my life completly is cfs.

    • Cort Johnson

      December 17, 2014 at 10:59 pm - Reply

      How well said! If everybody could get understand this

      “The cancer was no big deal they went in and cut it out. My heart rate stayed at 130 beats per minute for first 4 days in hospital. I knew I would survive cancer no big deal. The disease that caused it and has squashed my life completly is cfs”

      We’d be in a lot better shape.

      • Bob

        December 25, 2014 at 4:42 am - Reply

        Well said Jimmy and Cort.

        I have got a whole bunch of illnesses and if I could get rid of just one of them it would be ME/CFS.

        • Jane London

          March 13, 2015 at 1:35 pm - Reply

          Bob…. I so agree with you. I’ve had CFS for around 25 years now. I have so thankfully found the hormones have brought me out of bed, lessened the pain and I’m now a new woman, my physician says around 50 to 60% recovered whereas around 5% before. I now have ovarian cancer. I’m rushing back to Australia for treatment as I can’t get it in the UK. But any day I would rather have that than CFS. I used to say I would rather have cancer than this, I’ve had it twice before. I still feel that way although I would rather not have both! :) I’m just praying I get back in time but if I don’t have had these bonus years out of bed. ‘The CFS is just truly dreadful. It’s so interesting that all the people who have had or still have CFS would rather have other things rather than that. It’s so true. People who’ve never had it look at me with disdain if I say I would rather have the cancer than the CFS. They think I don’t know what I’m talking about but I do.

          • Cort Johnson

            March 15, 2015 at 1:48 pm -

            Good luck Jane!

  • Tricia Watkins

    December 17, 2014 at 6:45 am - Reply

    There are obvious discrepancies with oestrogen as you have shown, Cort, so is it possible that progesterone is to blame? After all, oestrogen and cortisol are both highly toxic end products of the steroid pathways and so need progesterone to oppose these toxic effects. Also men have much more stable progesterone levels than reproductive women whose progesterone is regulated by the cycle. Perimenopause, when there is a spike in these illnesses, creates progesterone deficiency as ovulation is required for most of its production and when women start to have anovulatory cycles, the level of progesterone starts to decrease. During pregnancy there is an increase in progesterone which protects the foetus and most women seem to improve symptoms, but the progesterone level dramatically decreases just before and after the birth and is, I believe, the cause of postnatal depression in some women and is possible to also be the cause of onset of autoimmunity. I know my own sister developed polyarteritis nodosum immediately after giving birth. As for low occurrence of these illnesses commencing in menopause, most women develop a new balance of hormones as the adrenals take over the role from the ovaries and are no longer oestrogen dominant (deficiency of progesterone). The relationship with viruses, etc could possibly be due to the fact that oestrogen remains in a certain ratio with cortisol so that when one is elevated, so is the other and high cortisol levels suppress the immune system. Mitochondrial dysfunction is a big factor as this is where the precursor to progesterone (i.e. pregnenolone) is produced. Puberty and peri menopause are both times when the demand for pregnenolone is very high

    • Cort Johnson

      December 17, 2014 at 11:02 pm - Reply

      As always Trish I learn a lot from your comments – thanks

      • Cort Johnson

        December 17, 2014 at 11:02 pm - Reply

        I mean Tricia – sorry :)

    • Jane

      December 20, 2014 at 9:27 am - Reply

      Tricia, that is interesting. I think I can relate w/ the progesterone rather than estrogen issue. At 14 I came down w/ ME/CFS after a viral illness. My father also has it (we didn’t fully recognize this when I was ill as a teen or that it could have a genetic component) though in between crashes he can be very productive and physically active. His seems to be triggered by EBV but he is very prone to sinus infections etc when not even affected by EBV…he’s also had h.pylori. For me it was many Dr’s appts yadda yadda, and being bedridden mostly for 1.5 yrs then slowly started junior college, had bouts of infections and viruses, then after much stress and a shortly after starting at a university at 22 (this yr) I have experienced almost a re-onset though not as torturous or severe as originally as a teen thankfully. It was like watching a train wreck happening watching the many symptoms return. I started supplements to target all I could and researched my breains out as much as I could when I could think and comprehend. I thought I was past the worst of this. No one ever educated me on what ME/CFS entailed. It’s been a curse and a blessing as I have learned SOO much this time around and it really fuels me to go on and help others in this area. Big time! Esp in the Central Valley of CA knowledge on this is severely lacking and the focus is on prevention on diabetes and eating your fruits and vegetables for a largely immigrant population. Of course us w/ this can eat extremely clean, have a superfoods diet etc and still be sick… **Anyway, regarding hormones: at 15 I had my hormones checked through a compounding pharmacist which does hormone balancing and my estradiol was 1.2 whereas the range was 1.3-3.3 and my progesterone was 11, range of 75-270 (luteal phase for both numbers) and my DHEA-S was low is seems at 6.8 b/c in the notes they mention normal for late teens to early 20’s would be 10-20 though I was 15. I was very ill and extremely exhausted at the time. I also didn’t take the rhodiola, 5mg DHEA, or 5-HTP she recommended and we bought. I didn’t understand how they would help at the time and my Dr (MD, integrative and holistic board cert) I have now thinks I should have just gotten the actual estrogen/progesterone and she doesn’t think just that would have helped me much anyway. Then just recently I had my estradiol and progesterone (DHEA left out accidentally and waiting for those results now) checked by blood tests the Dr ordered (as a teen I did saliva tests). Checked during luteal phase. My estradiol was 66 (range 56-214), progesterone 1.9 (range 2.6-21.5). I tried 1 month of 2.5 mg bi-est combo estrogen and 50mg progesterone. On this I got hot flashes 4 days before my cycle and 2 days into it…worst I’d ever experienced. I usually get then the 1st day only. I also got cramps 2 days before my cycle even started…which has never occurred. Then, I had a flare of IBS which had been decently under control and some pretty severe cycle type cramping. My acne improved some however and w/ topical med alone it never did this much this fast. When I had to go off the cream for my cycle…by the time my cycle ended my acne was already flared before I could even get back on the cream. My doctor asked if I wanted to just try progesterone only cream and I didn’t know but I knew I probably needed something adjusted! Then I’ve read this and possibly something on the Solve ME/CFS Initiative end of the year webinam about estrogen…how it seems protective in this, MS, etc, possibly reduces pain. Here’s the thing….estrogen is excitatory and people w/ CFS generally have issues feeling “wired,’ jittery, not at ease etc even though they don’t have underlying energy. I didn’t want to go to JUST progesterone if research says this could help. But all that to say I agree, I think the issue is a lack of progesterone or deficiency which just maybe means estrogen is higher or dominant relative to progest. My estradiol is in range now though on the low end and as a teen it was just slightly out of range low. My progest has been pretty rock bottom low the whole time. I talked this afternoon w/ the compounding pharmacist which is very knowledgeable and has experience, more now even than 8 yrs ago. She said she just does progesterone in most younger ladies and that they can take it until their cycle starts (not stop it and wait a couple days lag for symptoms before cycle) and even many though their cycle whereas w/ the est/progest I couldn’t. My concern was acne b/c progest could make more testosterone possibly from what I’ve read…maybe not so much w/ creams vs hormone pills. Anyway, in light of these symptoms and discussion w/ the pharmacist I’m thinking I’ll try just projesterone and then probably add in a very small amount of BiEST estrogen combo to see how tolerate it since on lower end and it seems only healthy for it to be in a more normal part of the range and could help protect/build bones as I am petite.

  • john

    December 17, 2014 at 2:31 pm - Reply

    Over the years I have been telling doctors that I believe I have mild CBS setbacks after having sex? I also had mono in my early 20th that flares up with sun exposure and stress?

  • Carollynn

    December 17, 2014 at 6:33 pm - Reply

    A few years back, I read an interview with Judy Mikovitz on Prohealth where she said something like “we know that hormones, particularly progesterone, can turn on viruses.” She soon went through all of the hoopla at Whitmeore-Peterson and I think that interview was taken down. I tired to to email her to find out more–something specific like a links to studies–but I’m sure my question was lost in the noise at that time. That piece of info from Prohealth was very timely for I had been suffering from shingles in my arm for more than a year, and only when I read her words did I link the shingles with the progesterone cream I’d been using on my arms for a few years. Does anyone know of specific studies about progesterone turning on viruses? By the way, I’ve now had chronic shingles, and everyone except my right foot, for almost six years, despite remaining at the highest, acute dose of meds throughout.

    • Tricia Watkins

      December 18, 2014 at 8:43 am - Reply

      If you were using progesterone USP cream, it is possible you overdosed or underdosed. The dose must be right for each person, too much or too little can exacerbate oestrogen dominance and thus immune suppression.

    • Kim & Kelly

      December 18, 2014 at 11:18 pm - Reply

      My sister Kelly had chronic shingles for 5 years, in the early 1990s. We both also have CFS. Some things we learned – it took 800mg 3 times a day + acyclovir creme applied to lesions, as much rest as possible, as little stress as possible (physical & emotional) especially as few doctor appointments as possible. We’ve discovered that doctor appointments wreak the most havoc.

      The thing that really seemed to turn her around was interferon. We were both given a small amount of interferon in saline. We did 3cc sublingual, twice a day. We don’t know what kind of interferon (alpha, beta, etc.) and the doctor we got it from retired in 1996. The only thing we know is that the same protocol was being tested/studied on MS patients. Maybe someone can find the study? It helped us both with energy and pulled us out of the crash spiral. We’ve tried since to get some other doctor to help us with something like it, but no luck.

      We are convinced that CFS (and so the chronic shingles infection) are autoimmune and stopping the spiral is the most important thing. Many people with shingles break out on their arm. It may just be a coincidence that you broke out where were putting your progesterone creme, especially since you have had outbreaks in other areas.

      • Kim & Kelly

        December 19, 2014 at 12:01 am - Reply

        Addendun: there are several herbal remedies that increase interleukins, which in turn can increase the body’s natural level of interferon. We have tried several of those. They don’t seem to work as well as the preparation our doctor gave us, but maybe they are better than nothing?

      • Kim

        December 19, 2014 at 12:14 am - Reply

        My sister and I both have CFS, and have had since we were little. We both had many viruses when we were little, so we don’t know if a virus, or which virus, would have been responsible for onset. We have a combined 90+ years of experience with onset, crashes and remissions. Both of our parents had/have autoimmune diseases. Our Dad had one. Our Mother has at least 4 – including Lupus, Rheumatoid Arthritis, Sjogren’s.

        Kelly & I had onset of CFS at <5, may have been viral. We have had CFS crashes throughout our lives. Mom was diagnosed with all 3 listed above in her early 70s. Kelly had one of her worst CFS crashes in her early 20s, caused by physical and emotional stress. Here are some of mine: age 28 (caused by fusion surgery), age 51 (physical & emotional stress), age 57 (massive physical stress).

        I believe the age ranges given above only indicate tendencies and are not the absolute rule. We don't believe any one virus is responsible for the onset of CFS. Rather, we believe, any of the following can cause CFS onset or a crash: viral, bacterial or fungal infection; physical and/or emotional stress – including injuries, surgery, insomnia, menstruation. This is especially true with a family history of autoimmune illness.

        Kelly & I are convinced that CFS is an autoimmune disease. As such, there isn't any one thing (e.g., estrogen deficiency) that can cause a crash. It's more a case of which straw broke the camel's back. There have been other Health Rising articles (thanks Cort!) that discuss the complex cycle involved in CFS, combining processes in several body systems. We think that "thing" that happened just before onset or a crash is not the "cause" but the straw that broke the camel's back.

        Similarly, we believe treatment probably isn't as simple as fixing that last "thing" that happened just before onset/crash. What is required is enough intervention to break the out-of-control spiral, and/or enough intervention to help the cycle repair itself. Questions include: Does the amount of intervention = the severity of the crash? In a severe crash, don't we need to hit the cycle in multiple places? Where do we hit the cycle to repair it? Each of these studies offers interesting data, but shouldn't they be considered in concert? Not relying on any one answer to define the problem or the treatment?

        • Cort Johnson

          December 20, 2014 at 3:26 pm - Reply

          I agree – I think it’s going to be a combination of things that go wrong simultaneously that end up causing the system to reset. That or a hidden, ongoing infection – or both! :).

          • Donna

            December 20, 2014 at 9:26 pm -

            Yes, the straw that broke the camels back with me was childbirth, but I wouldn’t take it back for anything. There definitely is something going on with progesterone, I believe.

  • Karen Rippon

    December 18, 2014 at 7:10 pm - Reply

    I got numerous viruses in my twenties which would last for a couple of weeks and leave me wiped out. I also had IBS in my twenties. I became ill with yet another virus at 32 but never got over it. Four years later I was found to have Hashimoto’s. I feel this played a part in my susceptibility to viruses. It took me a 10 further years to get a sufficient dose of thyroxine. I’m not fully better now but a lot more stable if I’m careful and pace myself. I’m also now menopausal but no significant problems as yet – finger crossed!

  • MAGGI

    December 21, 2014 at 11:07 am - Reply

    i developed cfs/me when i was 45 – i had a baby when i was 41, followed by breakdown of relationship over next 2 years, early menopuase (last period aT 43), glandular fever at 44. all the contributory factors! stress, late pregnancy, early menopause, glandular fever, single parenthood and stressful job. i am now 63, kids left home, retired at 61, so better able to control symptoms but still have hotflushes, since i was 42, and continue to pace myself and lead somewhat restricted lifestyle. its frustrating!

    • Cort Johnson

      December 21, 2014 at 8:00 pm - Reply

      Boy do you fit the profile!

  • Jane London

    March 13, 2015 at 1:21 pm - Reply

    I so fit the profile when it comes to Oestrogen and Testosterone. I cam down with CFS in my mid 40’s. I’d had my last baby when 39 and within about 4 years went into the menopause. I had to have major surgery which I didn’t recover from and that was straight after 2 years of intense stress in Family Court. Then I got a virus like Glandular fever but it seems it wasn’t as my children had ti too and they tested negative for it. I slowly sank into CFS. I became bedridden for about 17 years, Finally my physician tried the hormones with me with aid began to climb up. I went from what he said was around 5% capacity to 50 to 60%. I’m in the UK now and the drs. took my medication away from me as they think I have ovarian cancer and the oedstrogen could be making it worse. I can’t get appropriate surgery here. I went back to being stuck in bed with such severe pain and even ended up signing a legal waiver to get my medication back so I could get back to Australia for surgery. I would rather take the risk with the hormones than lie here forever just dying in my bed at home from cancer. This way I have a chance. And if not? Well I’ve had quality of life since the hormones and every day has been a bonus as I was so sick my physician in OZ thought I was going to die. I’m convinced these hormones play some part it, they absolutely have to as I just went in a straight line up after having them. The drs. here don’t believe it and keep saying it’s for the menopause, but oh no. It’s not. It gives me life where there is none.

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