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Adrienne Dellwo

Post-Mononucleosis Juvenile Chronic Fatigue Syndrome

By January 14, 2013

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Research Brief

A new study looks at the rate of chronic fatigue syndrome (ME/CFS) in adolescents after mononucleosis (the "kissing disease") and reveals differences between the kids who fully recover and the ones who are left with ME/CFS.

Looking at post-mono adolescents, researchers found it was mainly the girls who continued to have symptoms long term. Many of those who fit the ME/CFS diagnostic criteria early on no longer did at follow up. Here's at look at how the length of time post-infection effected the diagnostic rate:

  • 6 months: 13%
  • 12 months: 7%
  • 24 months: 4%

Researchers say the following factors distinguished those with ME/CFS from kids who'd fully recovered:

  • Certain cytokine network test results
  • Oxygen consumption, at rest and during exercise
  • Life stress factors (such as those caused by long-term illness)
  • Symptoms of autonomic nervous system dysfunction

They did not find significant differences in activity level, exercise tolerance or orthostatic testing.

This study was only of adolescents and findings may not apply to adults with ME/CFS.

Did your illness appear to be triggered by mono? Did you get sick and never recover, or did you recover only to have symptoms re-appear later? Leave your comments below!

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Comments
January 15, 2013 at 7:39 pm
(1) PacinginPA says:

I had mono as an adult. I seemed to recover. Ten years later I fell ill with what seemed to be the flu. After that I was repeatedly ill until I was diagnosed with Chronic fatigue Syndrome two years later. I continue to experience CFS.

January 15, 2013 at 9:12 pm
(2) Brett says:

I also had mono as an adult, contracted during a very stressful and prolonged period for me, and when this was gone, I still had the fatigue. 5 years later I had a Hodgkins lymphoma. 10 years later, thanks to treatments, I am cancer free, but with the chemo/radiation wiping out what little energy I had left, and this perhaps causing autonomic nervous system dysfunction (could my food allergies–which among other things apparently led to strong irritability I think out of a lack of DHA, B12, and Vitamin D absorption–be an effect of focus away from parasympathetic to sympathetic?), it’s a bit hard to celebrate so heartily.

January 15, 2013 at 9:13 pm
(3) Brett says:

Oh, I also think food allergies can cause malabsorption of melatonin, as when I break my regimen, besides getting my strong heartburn back, I also have sleep troubles…

January 18, 2013 at 6:10 am
(4) MR AIDAN G WALSH says:

Everyone is so fixed on ebv lyme c. pneumonaie mycoplasmas hhv6 but reality is this ‘internal ionization radiation’ the largest medical radioecological disaster epidemic of the 21st century a complet sham, lie cover-up…the ppaper from Wane State University comes out in the spring of 2013…broken chromosones/translocation not ebv lies….see, Troy Livingston’s facebook page dedicated to 100% of radiation across the globe, also join me on facebook Southampton area unde Aidan Walsh I post numerous m=on radiation there ‘ANGEL’ in gold is my profile pic there…Not meaning to be negative from great work you are doing here but ’cause’ has been found by these teams involved…There are now teams working on improving a thyroid type hormone from Japan but not f.d.a., we have exactly same as cancer patients called CRF CANCER RELATED FATIGUE but our fatigue does not lift at all…we have had numerous outbreaks of nuclear disasters including Chernobyl and one also in Russia…Militaries dumped over 260 tons of radioactives, biologics, chemicals on the Iraq people…No difference cfs gulf war illness jusyt ‘label syndrome illnesses’ I am going to be changing all of my sports website into ‘RADIATION AWARENESS’ in time…

January 18, 2013 at 4:31 pm
(5) Rosa says:

In early 2011, at age 20, I started having severe pain issues. It took several months for doctors to figure out what was going on. Turns out, it was my gallbladder. It had to come out, but was so infected that I had to stay at the hospital for 5 days. After the surgery, I was feeling better for a month or so, then I got really sick again. I went to the doctor when I noticed the glands in my throat were swollen. I was diagnosed with Mono right before my 21st birthday in July.
I took all the antibiotics, steroids, and pain meds, but I still wasn’t getting better. I started having other symptoms and ended up going to the doctor several times per month. We figured out I had fibromyalgia in early 2012, but it wasn’t confirmed until the middle of the year. The last two years have totally drained me, physically and mentally. I wish we could find something that could help me more.

January 18, 2013 at 4:42 pm
(6) madalyn corbit says:

I was diagnosed twice with mono as a teen- 13 and 17 yrs., and once as an adult. Ten years after my last case, in 1993, I had a terrible virus, requiring hospitalization. Following that I was repeatedly ill, just sort of never got all the way well, for about a year, until sleep disorder became very extreme, which led to my initial diagnosis of Fibro/CFS in 1994. Was able to manage symptoms to a relatively successful degree until car accident in 2000.
I have always felt like a person with very compromised immunity, so became involved in natural foods, supplements, etc. pretty early on (early to mid-1980′s). Sometimes I test positive for Epstein-Barr, sometimes I don’t which I understand is pretty commonplace. I attribute much of my vulnerability to lifelong exposure to stress- I’ve always felt like there was at least some connection with my “multiple mono”, and often wonder if it was CFS/Fibro all along, just not discovered yet.

January 18, 2013 at 5:18 pm
(7) Peggy says:

Adrianne ,
Thank you SO much for featuring this topic in your weely newsletter. I’ve had fibro since 1987 , but have learned how to manage my symtoms. My biggest problem is that I’ve had very elevated EBV & CMV levels for 22 months. I was originally infected with both when I was 21.& recovered in a/b 6 wks. The virus re activated 3 yrs ago & stayed elevated for 3 months. In March of 2011 it happened again….& the levels haven’t decreased yet. I’ve seen an Intergrative Medicine Dr , 2 Infectious Disease Drs & an Immunologist. None of these specialists have offered me RX /anti viral therapy b/c this virus is in my cells…not my blood. I hope that Ampligen is approved by the FDA. I would really like to @ least try it !

January 18, 2013 at 9:03 pm
(8) Nancy says:

I had mono at age 17 and was extremely ill for over a year, had to drop out of school for a semester. I slowly recovered but never felt as well as I did before the illness. Twenty years later I was hit by a viral -like illness that felt like mono only much, much worse.

I have never recovered. I’ve been diagnosed with CFS/FM and also have osteoarthritis and multiple chemical sensitivies, as well as some unrelated conditions.

I am now 72 years old and homebound going only to medical appointments, and I have to use a wheelchair. I’ve wondered if it’s related to the mono.

I have a granddaughter that developed mono as a child and was ill for several years afterwards. Her pediatrician thought she had CFS but she recovered and is now healthy. To call this a kissing disease is not accurate. It’s transmitted many ways apparantly. She was only 10 years old.

January 19, 2013 at 11:40 pm
(9) Rachel says:

I was diagnosed with mono at the age of 13 and have had issues with chronic pain and fatigue ever since. i’m fifty eight years old now and coping fairly well with my disfunction, i’ve learned many good strategies but oh, when i think of what my life could have been like if i’d had energy and were pain free all these years.

January 20, 2013 at 5:47 am
(10) Carole says:

I spent 3 months home-bound with my first mono infection when I was 17, and took many months more to recover. I had some symtoms of FMS throughout the next 20 years, such as parasthesias, chronic neck pain, temperature intolerance, which seemed to gradually get more challenging. It was not until immediately after the second mono infection at age 45 (which was not nearly as debilitating as the first), that I began suffering from CFS, vertigo, IBS, chemical sensitivies, brain fog, etc. I was diagnosed with FMS about 4 years later.

January 20, 2013 at 12:05 pm
(11) Donna says:

I was a sickly kid and contracted mono at age 11. Took well over a year to recover. GI, skin, virus issues all along, then severe CFS/fibro @ age 55. 6 years later I’m doing a lot better. Perfect Health Diet (Jaminet & Jaminet), off gluten & grains, off anything containing mold (allergy testing – many things contain mold), (diet changes elminated life long low gastric motility and lifelong psoriasis); I exercise daily and do trigger point thereapy (have a TP board from Health Back Institute) and accupressure (tool, video course from Dr. Eric Berg), acyclovir meds (now trying to get off them with 3 x daily P73 Oregano Oil sublingual drops with food); AOR Ortho Adapt & d-ribose supplement, 800mg Ubiquinol daily, for energy; sleep with eye shades (low blue light glasses before bed, low bllue light night lite), pillow top mattress, FemMED sleep supplement, Mercola sleep CD; daily d-mannose for bladder issues; transdermal bioidential hormone replacement, T3 and T4 biodential, synthetic thryoid supplement.; fermented foods and a ton of Mercola probiotic supplements; Body Ecology fermented greens and digestive enzymes. And I may get rid of a root canal tooth that I had a year before I got ill @ age 55 – it is still sore.

January 20, 2013 at 2:19 pm
(12) Rebecca says:

I had mono at age 13 and I think started having CF symptoms at age 16, but maybe I just never fully recovered? I’m 28 now.

January 23, 2013 at 6:34 am
(13) Name Mcnamerson says:

I got mono at 19, and i was a very fit, active, person. I was training in a Muay Thai gym 4-5 days a week and working out on my own. When i got mono i recovered until i tried to go back to exercising about a month later. One day after a work out it felt like within an hour i was hit with a terrible flu. I never recovered, i thought maybe i had been concussed because i took a pretty solid elbow to the temple that rocked me sparring, but almost three years later im still incredibly weak and sick. Now i am 22 and housebound.

Someone please cure this. My EBV titers are through the roof, my immune systems number are all well below normal range (NK, b and t cells). Its like living with someone holding an electric sander to my will to live. All i want to do is be healthy, and be able to go back to college, finish my degrees, and workout again. I miss it all so much.

August 5, 2013 at 2:25 am
(14) Jen says:

I had severe mono when I was 17. I had CFS symptoms for about two years afterwards and since then have relapses occasionally, usually when I’m dealing with a lot of other things, like any time we move or after any emotional crisis’s. Luckily my relapses have all been manageable and usually only last 3-6 months.

September 11, 2013 at 6:09 am
(15) concerned mother says:

My son developed glandular fever when he was eleven, He was ill for 4 months, falling asleep at school, then he seemed to recover. However he then got another severe throat infection that progressed into a cervical abcess 6 months later, He recovered from this after about a month and seemed healthy but then a year or so later became really ill with night sweats and swollen lymph nodes and orthostatic intolerance etc for another 6 months. Doctors diagnosed him with severe post viral fatigue syndrome, Since then he has had lingering malaise, headaches sore throat, nausea and sore muscles and fever for eighteen months. He gets to school about twice a week. He has had to give up sport and his referreeing job. Sixteen and too tired to keep up friendships on weekends. Gaining so much weight. They now think obstructive sleep apnea is hampering his recovery, But where we live the waiting time for people under 18 to have a sleep study test is really long, three months private, six months public. Will this ever end? I miss my happy sporty son, but have learnt to appreciate my quiet deep thinker son. What does not kill you makes you stronger.

October 22, 2013 at 12:44 am
(16) Christina says:

I am 19 years old now, but about 3 yrs ago, had severe mono along with a walking pneumonia and adenovirus. I pretty much was bed bound for a year, going on homebound for high school during my sophomore year. Although I have somewhat recovered from the severity of mono, I now have chronic fatigue syndrome that just seems to never let loose. Am tired all the time and had to drop out of high school and get my GED. I just completed one credit college class this past fall, but it was extremely difficult with the mono.

November 10, 2013 at 7:23 am
(17) concerned mother says:

Just an update.
My son was given a priority placement for the sleep study and it is now offical, he has sleep apnea. we are now working towards treating this and hopefully once he can get enough oxygen at night he will start to heal. It now appears that the inital infection left him with big scarred tonsils that obstruct his airways when he is asleep. So he never really recovered from the glandular fever.
We are hoping by next year he will be well enough to return to school and return to his sports. Wish us luck, and best wishes to you also.

January 18, 2014 at 7:59 am
(18) Reba McAnally says:

My daughter had a really bad case of Mono when she was around 16 years old. She seemed to have the same symptoms several times and went through the same treatment of antibiotics. Around the age of 21 she started feeling tired all the time and would get to the point that she could not function. We have been to several different doctors that have diagnosed her with several different things….Epstein Barr, Lyme disease and Chronic Fatigue Syndrome. We was told that she would just have to live with it. At the end of last year I heard about a doctor in MS that could help her. We traveled there last week and he started treating her. After one week of treatment she is a totally different person. Her muscle aches are gone and people are noticing the difference. I am only telling you this because I KNOW the despair that you are going thru and hope that I can help. The doctors name is Dr. Robert H. McCrary in Hattiesburg, MS.

February 18, 2014 at 12:19 pm
(19) Chris Wilson says:

Reba, what kind of treatment does Dr. McCrary provide? I searched for him on the internet and it said he is an allergist, is that right? My oldest child had mono when she was in 5th grade, and we didn’t realize for several weeks why she was so tired or hard to get out of bed. I say she “never really recovered.” After a few years of going to many doctors and trying many medicines and treatments, we went to Children’s Mercy Hospital in Kansas City. They diagnosed her with postural orthostatic tachycardia syndrome (POTS). She was treated by Dr. Daryl Lynch in the CMH Teen Clinic, with very good results. She has been able to manage as she outgrew the disease. It’s something that most people outgrow by early adulthood. Today she is in veterinary school and still has some fatigue but is so much better than those early years with it. She’ll be 22 this year. Now my 15 year-old son has mono and I’m very concerned about how long his fatigue will last.

February 25, 2014 at 5:25 pm
(20) Steven says:

I had mono and had very little energy afterwards for almost a year. I was always breathing hard and never felt refreshed after sleeping, even if I had 9 or 10 hours of sleep at night. I had a number of other symptoms as well including headache, brain fog, bad cough, and digestion problems. I suspected that the way I was breathing could be the problem. I came across the BUTEYKO method. This changes the way you breath, helping you take small, less frequent breaths rather than many deep breaths. Over breathing leads to many different chronic illnesses and changing the way you breath through BUTEYKO has helped people with many different chronic illnesses. I can’t possibly overstate the power of these breathing excercises as I have been doing them for just over 2 weeks and my symptomes are all gone. I have more energy than I did before my illness. I suspect that mono changes the way a person breathes by forcing large constant breathing and this leads to overbreathing even after the illness has passed. And this BUTEYKO method is never recommended by doctors, simply because they can’t make money off it the way they do with expensive pills. BUTEYKO can benefit anyone. THE END

April 15, 2014 at 11:29 pm
(21) michael says:

WOW!……I can’t believe so many have been dealing with this longer than I have.

In 1973 when I was 13…. I got mono (from actually kissing my girlfriend) who was supposedly over hers….NOT SO MUCH

I’ve been sick ever since….my main trigger is a sudden weather / temperature change…..yesterday the high was 70 or so with an overnight low of 35…which means the following day I will become an idiot essentially with no will to live…..GOOD TIMES
*punctuated with a numbing headache / face and ears flushed / feel like body temp is 102 or so but only about 97.5 / dizziness with sudden standing / literally zero ability to concentrate or remember things short term / incredibly irritable / total crash of autonomic nervous system > heart rate stays elevated for LONG periods of time…maybe cry 10-15 times per day…sleep disrupted +++

I always feel like crap…but my ability to function is much better during the summer months than any other….fall is by far the worse when the temp drops overnight. I also have had rheumatoid arthritis for 15 years or so and now cataracts…gout…osteoarthritis…..and the usual suspects like allergies…irritable bowel…dry eye and mouth plus several others for grins.

The KEY….seems to be finding a way to keep your body moving without overdoing it….somehow building and maintaining a support group,,,,and creating a lifestyle that is fulfilling but minimizes your exposure to excessive stress.

Best of luck to everyone…the irony is we long term sufferers often may be perceived as weak…but we might be the toughest folks on the planet!…..
*as I tell my friends who might question how bad I really feel….let’s see how energetic…smart… and cool YOU are after a mild to severe case of the flu (essentially)….that lasted for FORTY YEARS….with some early Alzheimer type symptoms (or concussion type maybe) thrown is for good measure…..

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