Leonard Jason and Ben Katz have been concerned that pediatric patients (generally assumed to be from 0-18 years of age) have been given short shrift for awhile. In their 2012 article, “Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome“, they highlighted challenges to the field of pediatric ME/CFS “with the hope that in the future pediatric cases of ME/CFS can be more accurately diagnosed and successfully managed.”
Jason’s is the first rigorous, community-based study of children with ME/CFS.
While it’s long been recognized that adolescents (10-18 yrs old) get ME/CFS, the idea that it occurs in children (0-10 yrs old) hasn’t gotten much attention.
The result is that ME/CFS, in many quarters, is still largely considered a disease of late adolescence and adulthood. A website called KidsHealth states:
Chronic fatigue syndrome can affect people of all ethnicities and ages, but is most common in people in their forties or fifties. It’s very rare in kids. A few teens do get CFS, and it affects more girls than guys.
Johns Hopkins states that a CFS-like illness also has been determined to occur in kids younger than 12″ but that “the actual number of children and teens affected by CFS is unknown.”
That’s all going to change with this study.
The Study
The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community‑Based Sample.
This is the first rigorous, large-scale, community-based study of pediatric prevalence. Community-based means the study examined everyone in the community – not just those visiting physicians.
This study assessed 10,119 youth aged 5–17 from 5,622 households in the Chicago area. Easily the most rigorous study of its kind, the study required a screening call with the parent, the filling out of numerous questionnaires and a physician visit that included a structured psychiatric interview, a psychosocial assessment, and a medical evaluation for a diagnosis to be made.
The child had to meet three diagnostic criteria (Fukuda, Canadian Clinical Criteria (CCC), Institute of Medicine (IOM)).Two reviewing physicians made the diagnosis. (The authors didn’t miss the opportunity to point out that the lack of a standard diagnostic criteria complicated matters.)
Results
The study found a prevalence of pediatric ME/CFS of 0.75%, or 750/100,000, with a higher percentage of African American and Latinos being affected than whites. (Past adult studies have found an increased incidence in racial/ethnic minorities as well.) The prevalence, interestingly, was three times higher than the adult 2003 CDC Wichita study (which used the Fukuda criteria) and about 80% higher than Jason’s 1999 community-based study.)
With less than 5% of the children having been diagnosed, 95% had ME/CFS without knowing it. (That was similar to adult diagnoses.)
I don’t understand the algorithm but its possible that’s an underestimate as forty-five percent of the children suspected to have ME/CFS failed to participate in the last screening step.
In the end, 42 children were diagnosed with ME/CFS, only 2 of whom had been diagnosed prior to this study.
The Gist
- No rigorous community-based childhood prevalence studies have been done in ME/CFS until now. (Community-based refers to studies which study entire communities)
- Websites have generally reported that the rates of childhood ME/CFS are very low.
- This 7-year Jason-Katz study, though, found just below a 1% rate of childhood ME/CFS in the Chicago area. Rates of ME/CFS were higher in those from ethnic/racial minorities, in girls and in adolescents overall.
- Only 5% of the children with ME/CFS had been diagnosed
- Extrapolated out to the U.S. the results suggests that 555,000 children in the U.S, could have ME/CFS, 525,000 who have not been diagnosed.
- Leonard Jason called the lack of support for these children and their families a “national disgrace”.
Seminal Study
Its rigorous approach – including the requirement for a doctor visit, the need to meet three different ME/CFS criteria, and the use of a separate panel of doctors to make the actual assessment – would, I would think, put its findings beyond reproach.
This study is important in so many ways. Since the two large community-based CDC studies in the 2000’s assessed adult prevalence, if its results can be extrapolated to the rest of the U.S., it would substantially boost the potential number of people with ME/CFS in this country by a quarter or a half (depending on which prior assessment is used).
With approximately 74 million children in the U.S., if my math is correct, this study suggests that about 555,000 children in the U.S. may have ME/CFS – of whom at least 525,000 have not been diagnosed.
The less than 5% diagnostic rate indicated that almost all children with ME/CFS, as well as their doctors, parents, school officials and friends, are in the dark about what’s happened to them. (Jason had the same finding with adults with ME/CFS in a 1999 study.)
The study raises a big red flag (lots of ill children out there who are not being taken care of) we can use to press federal agencies and medical societies to increase research funding and doctor education. (The NIH, by the way, funded the study.)
The impact of not being able to play with one’s peers, participate in school activities (during a time when all one wants to do is fit in), etc. is great enough, but imagine the psychological toll on the child and the family – the doubts, the worries, and the frustrations a mysterious illness in a child produces.
Lenny Jason pointed out how traumatizing having an undiagnosed illness can be for a child:
“The most important thing for children is to be accepted by their peers and if you don’t have the energy to socialize and do things with them and develop those friendships, that is a real obstacle. If they don’t have the energy to prepare for class or to stay focused in the classroom, they can get picked on by people who say you’re lazy, off task, not trying.
“There are a lot of potential barriers that these children can be exposed to, from peers, to teachers, to medical staff and even the family members who don’t understand.”
If approximately 1/100 children in the U.S. has ME/CFS, at least a couple of children with the disease may be present in every moderately sized elementary school. (I think of a kid on my block who went from being athletic to homebound).
School nurses could be on the lookout for girls, in particular, with high absentee rates, who have trouble participating in physical activities, who have unrefreshing sleep, etc. Simply informing the parents that their child might have this disease would be greatly beneficial. Dr. Friedman has been engaged in a project to educate school nurses.
In a Chicago Tribune report, Lenny Jason stated
“There’s a lot of problems with finding diagnoses in treatment settings, so this is something that parents are going to struggle with, I don’t know of any illness that is as scarce in terms of resources for families who have sick children as this — that’s a national disgrace.”
Score another groundbreaking study from the Jason team in Chicago. More are sure to come. Jason and Katz are involved in a huge, ongoing, and hopefully now completely funded, examination of infectious mononucleosis and ME/CFS in college.
Take the Poll!
Tell us when you came down with ME/CFS and then we try to see if any glimmering’s of ME/CFS were present during childhood in a poll asking what your childhood health and experiences were like. Because we’re trying to get at precursors to ME/CFS please, if you came down with ME/CFS during your childhood or adolescence, tell us what symptoms or events happened prior to your coming down with ME/CFS.
If, for instance, you got ME/CFS when you were 12 you would report all experiences/symptoms you had before that age of 12.
Suggestions are welcome!
Childhood and ME/CFS
Some ME/CFS Pediatric Resources
- Myalgic Encephalomyelitis/Chronic Fatigue SyndromeManagement in Young People: A Primer
- Pediatric ME/CFS Resource Center – Mass ME/CFS and FM Association
- The CDC’s Children with ME/CFS page
- Pediatric Chronic Fatigue Syndrome Fact Sheet – NJCFSA
Hi Cort. Some of the questions didn’t show up on the questionnaire page for me, but showed up on the results page. So I’ll add depression and anxiety and irregular periods here.
Thanks. I think I can add them to the poll results.
Those same two thigns showed up on the poll for me, but even though I marked them, they are not checked on my results page like the other thigns I marked are.
I didn’t have frequent colds but I did have bronchitis fairly often (and antibiotics) as a child under 10, or so.
I think antibiotic use messes up the microbiome in the gut and elsewhere.
Also it seems that being born via caesarian section/vaginally can also radically influence the ‘seeding’ of the microbiome.
I was born vaginally, as far as I know but I was overdue and my mother was under tremendous stress when I was born.
Right. Great point about Caesarian’s – passing through the birth canal does seed the babies microbiome. Isn’t that remarkable! I added it.
I was in my mid 30s when diagnosed with fibromyalgia and mid 50s with ME. However thinking back I distinctly remember getting very sick in grade 11 and took a long time to feel back to health. I was up and down in my 20s to mid 40s when I crashed for good.
There isn’t a lot (any) of info on the percentage of people with ME who go in and out of exacerbations and remission. Do all eventually crash? I was able to work full-time and did numerous sports but could never improve my endurance/stamina. My “crash” happened over a few years in truth.
Cort do you know of any articles or studies on this?
This survey is a good start on the subject.
Reply to Kathryn,
The good news is that, not all people with relapsing – remitting pattern eventually crash. I became sick in my 30s but came right and the symptoms ( including pain mainly in neck, accute allergies, sensitivities etc etc) have not returned. My daughter has had a relapsing -remitting pattern for the last 23 years, since her 20s, despite long periods of being totally bed-bound now manages to maintain a business teaching dance.
Kind of an aside, but The book “Missing Microbes” discusses seeding a newborn’s microbiome through the birth canal.
It also discusses swabbing babies with vaginal fluid after a C-section to mimic the inoculation process. Encourage pregnant women to consider this!
An addendum would be born in the caul/sack – Which my ME daughter was – so natural birth but same issue of lack of birth canal flora
I too had bronchitis And the heavy antibiotic treatment pre-ME (onset age 9). The bronchitis recurred about 3 years into my illness and worsened me. I also had the teeters to Coxackie B (a polio virus) at age 9.
I also had frequent bronchitis as a child but didn’t tick the ‘frequent colds’ box. Every winter I’d miss 2 – 3 weeks of school.
My doctor says it would be diagnosed as asthma these days. I live in UK, so that’s the NHS.
I developed asthma for definite in my 20’s and it’s got worse over the years.
I didn’t have frequent colds (that I remember), but was diagnosed with pneumonia three times (missed weeks of school in grade three). There was no option for this, so I chose the ‘prolonged colds’ option.
Also, I was sensitive to heat or cold and chose that option, but it doesn’t show up as ‘selected’ on my results page.
Reply to Tracy Anne, I marked the frequent colds, but mine also were frequent bouts of bronchitis instead of actual colds. I was always sick, every time I turned around. I was also under 10 years old as well. Interesting we seem to have that in common. Consequently, I was on frequent antibiotics as a child too. Then, right before I was diagnosed with mono at 13, I was sick every two weeks it seemed with a respiratory virus, so I was again put on long-term penicillin. Interesting to think this might be a correlation.
I also marked colds which were more properly bouts of bronchitis and/or “walking pneumonia”. Doctors kept testing me for cystic fibrosis. I also had failure to thrive, not reaching 15 pounds until I was 30 months old. My first growth spurt happened at age 14 when I gained 20 pounds and two inches in three weeks [from 60 to 80 pounds and 4’8 to 4’10].
Hi Cort, appreciate you broaching this issue, as a carer to a 17yo with ME/CFS – a fit, active kid who came down with glandular fever at 12yo. He was always super sensitive to medications which I strike a lot among the carers support group I co-admin here in Oz. Also, viral illnesses always knocked him around badly from a young age. It may not be appropriate to share here, but our Radio National this week aired our personal story to raise the issue of how vulnerable young bed and house bound children are and the urgent need to better cater for them. https://www.abc.net.au/radionational/programs/healthreport/chronic-illness-and-missing-school/11948940
Thanks very much for adding the link. Congratulations on getting your story out.
Shelley,
Thanks for sharing your story. In the US, glandular fever is called infectious mononucleosis, and as we know it’s caused by the EB virus. I contracted it at age 20 but did not develop fibro/ME/CFS until my early 50s. My heart goes out to your child, and to you.
Could it be worth adding a category of tonsillitis / Strep infections?
Absolutely
I agree, I had tonsils out as a 10 yr old child but couldn’t remember if this was an overnight hospital stay so I didn’t mark that.
I can’t remember a time before my tonsils were removed at the age of 8 that I DIDN’T have tonsilitis.
You may notice I filled in the questions twice. I did once for me and once for my daughter.
Hi, I came down with pots and chronic pain and fatigue in my 40s. I’m female. My son came down with it aged 13. I’d like to think he would’ve been dx but the truth is if I wasn’t ill with it myself, I may not have really understood what his problem was.
I’m sure that you’re right. I will add orthostatic intolerance. Thanks.
Eagles Syndrome also runs in Children it would be nice for him to scan these children for styloid issues. I know a Woman she & her daughter both have Eagles Syndrome
the Mother was operated on her left external neck the child now showing some symptoms diagnosed with Eagle Syndrome but Doctors will monitor every 5 years on
scans or symptoms worsen now Surgery will be done
I was a fairly healthy child, although I had trouble learning. I noted my concussions, dizziness, and sensitivities in the poll…but along with mono I also had scarletina and cat-scratch fever as a child. As a young adult before getting diagnosed I also was bit by something, but IDK if it was a spider or a tic. It swelled up and I vaguely remember it looking slightly like a bullseye, but at the time I never knew anything about bullseyes or Lyme. I’ve been tested for Lyme since, but it always come back negative. (I was diagnosed with CFS in late 1990)
Cort-
THANK YOU for everything you do for this community- a LOT of energy goes into this! I have learned so much from your articles and am finally gaining some direction as to what steps I need to take next.
In addition, I checked off “depression and anxiety“, and “sensitivity to heat and cold“, but they weren’t checked on the results page that came up afterwards. And I failed to check off “experienced significant illness in immediate family”.Sorry!
Thanks Amy, I think I can add them 🙂
Hi Cort – Thanks for this article in particular – stunning info!
I was 8 yrs old when I believe I “got” CFS, which started as constant/recurring flu-like illness mixed with severe allergic rhinitis, both coming on suddenly and together, as I recall.
I was not formally diagnosed with CFS until 39 yrs old – 3 decades later.
I can’t say if I had any PEM symptoms as a child because I was constantly drugged from the age of 8 by antihistamines (and other things) – tired with feelings of heaviness all the time. There was definitely some fatigue with the allergies but I don’t know if any of it was related to my activity as well.
I was 19 or 20 years old when I first knew for sure I had a fairly serious fatigue illness, as I couldn’t keep up physically with my peers at university at all. But I saw it all as “just part of the allergies.” Later in my 20s when the rhinitis toned down somewhat I began to get just the bouts of fatigue instead and in my mind I called them “dry allergies.” In retrospect I think these “dry allergies” were PEM.
The other symptoms of my kind of CFS came on slowly and one at time in my 30s.
Fascinating, Olwen….Thanks for sharing that. It certainly sounds like most of the ingredients for ME/cFS were there early on.
Thanks for doing this. I don’t know what age “childhood” ends for purposes of the survey (or I didn’t notice if you did specify it). I did get mono but I think I was 21 by then.
Another question I would have found interesting to have on the questionnaire is something like “susceptibility to infectious diseases”. I was always the first in my group and my family to catch the normal childhood diseases, like mumps. That was back in the 50s when it was considered a good thing for kids to get those diseases when they were young — I think I was 6 or 7. So my parents made my two siblings sleep in the same room as me so that they would get the mumps from me while they were young too. Neither one did.
Also, I didn’t check overnight stays in hospitals because I only recall one stay: to have my tonsils removed. I wonder if it wouldn’t be interesting to know whether the current adult population with ME/CFS had their tonsils removed as children as part of the questionnaire.
I was always very athletic and very smart in school – graduated second in my class in high school (the guy who graduated first went on to MIT and became a physics professor — and has always been healthy, for whatever any of that is worth!)
I’m so glad they’re concentrating on children.
The tonsil removal is interesting!! I was very sick with sore throats ( with white bumps on them) and had them removed at age 20. Lots of Antibiotics. Very difficult post op. My health issues went downhill after that!
Tonsils is a biggie that we forget – and I will add tonsils removed as that indicates a pretty serious case, I would think. I was surprised at how many childhood infections there were – there were so many that I didn’t add them to the list.
Hi Cort,
I’m so happy to see childhood ME/CFS finally being addressed.
I had a viral infection, Pertussis at age 9 months.
My immune system has been messed up ever since then.
Although I was vaccinated, I had severe cases of all the childhood diseases.
I had my tonsils and adenoids out at 4 years old.
Rather than being the cause for this . I think it’s just another side effect of having ME/CFS.
I’m 58 now, I just get new Diseases diagnosed with me all the time.
I would suggest adding: Have you had autoimmune diseases?
Many are diagnosed with FMS/CFS like me.
Doctors in my area know nothing about ME.
I didn’t add frequent antibiotics because I didn’t remember if I did or not but, in hindsight, I most likely did after lancing infected eardrums went out of favor (with lots of screaming) and I had many of them maybe from 2 parents smoking in the house. Now THAT might also be a an important question, “did your parents smoke?” since a few years back I read that chronic ear infections were caused by second hand smoke.
PS – As a child I also developed (a) sleep phase shift to waking later, and (b) a recurring rash on my fingers which was later thought to be a novel kind of herpes by a doc who examined it in the 90s.
These both came on around the time of the allergy/flu pattern onset. In the case of the rash, it might also have been present somewhat before the allergy/flu onset – hard to remember now.
Also for me, antibiotics were fairly constant from the age of 8, plus weekly or fortnightly “desensitization injections” of the allergens that showed up in my tests for maybe 2 years after the diagnosis – so a lot of injections as a child beyond the normal ones.
Thanks for providing two more! Herpes simplex rash and frequent antibiotics use.
Oh Cort, this response reminded me that though I didn’t have asthma/eczema/severe allergies in my childhood, my two sisters did, thus the recent theory that extrapolates that a familial genetic mutation for allergies may lie dormant until exposed to environmental stress factors. So the question about allergies in siblings or parents and grandparents may be insightful. One of the sisters went in to develop ME/CFS in her 30’s and the other outgrew her allergies and is still fine. Me, the ultimate healthy person with zero allergies developed this crap in my 50’s and I manage it pretty well with the diet from hell.
For me, the only things I remember are messy bowels, some gut problems I think, concussion and Giardia infection.
I also added turbulent or traumatic family environment
I’m shocked that 44% of people, thus far, came down with ME/CFS before they were 18. I would have thought it would have been much lower…And 15% believe they did before the age of 10! Wow…
I now realize it would have been better to ask to list symptoms prior to the start of ME/CFS! I just did that and took screenshots of the present results.
That may be because more people who had it as children were interested in reading it given the title. Even thoguh I care abotu children with ME, I usually skip over things about them, because with extremely limited energy, I have to pick & choose the article that are more relevant to myself. I did not get ME until a car accident at age 32 & I was extremely healthy & athletic until that pt. I also do not have any children of my own. So, I suspect that many replying do the same thing, & thus the results are skewed because those who did have it as children are more interested in reading this. I almost missed the part about the poll, but when I saw that is when I decided to read this article.
Thanks Cort … My son was diagnosed as a 10 year old and couldn’t get off the sofa for 6 months. Treatment from Raymond Perrin got him through School and Uni and he’s doing good !
Another two that I experienced as a kid: 1) Had a tonsillectomy 2) Febrile seizures. I didn’t get ME until age 28, but I’ve wondered whether my tonsillectomy may have weakened my immune system. My understanding is that medical research didn’t fully appreciate the positive role of tonsils back then. Coincidentally, my ME-triggering event was a severe, unidentified sore throat virus.
Hi Cort,
I had several “polio-like” viral infections. Likely Epstein Barr which I later had recurrently. I imagine lots of pwME had similar infections. Perhaps you can add viral infections to the list next time.
Thanks, great article and super interesting to see the poll results.
Dr. Bell treated many children under the age of 10. According to him, children under the age of eight generally “percolate” along with a variety of flu-like symptoms. At age eight, ME/CFS hits full force. This was true of my daughter, who was ill for a solid year with the “flu” at age seven, and then, at age eight, showed classic ME/CFS pediatric symptoms. Age eight is when girls get their first blast of estrogen. According to Dr. Bell, under the age of eight, boys and girl contract ME/CFS at equal rates. After eight, girls predominate. (All of this information came directly from Dr. Bell when he diagnosed my daughter.)
WOW. Very interesting. No surprise really that sex hormones – which get far too little interest in ME/CFS I think – play a role. Klimas’s modelling finds that testosterone is protective and at least one doctor uses it in women.
I would have added two questions to the poll:
1. had or exposed to Tuberculosis
2. lived in a foreign country, especially 3rd world country, and therefore had major vaccines AND exposure to very different illnesses.
I would answer yes to both of those myself.
I had sensitivity to noise from a very young age. I know of another M.E patient that experienced the same. It might be worth adding to the list?
From the very beginning, I was constantly sick and lagged way behind my peers in terms of size (still am very small–even smaller than one would expect from looking at my parents). Had low energy too and what I now know to be POTS. Eventually had a tonsillectomy and also, what you didn’t mention, a near constant case of yeast infections (top and bottom) from all the antibiotic use.
What I didn’t know then is that I had Ehlers-Danlos. Personally, I think with every illness, I got closer and closer to full blown ME/CFS. I would have post viral syndrome and then, sort of a rebound–until the next bout of illness. By the time I reached young adulthood, I most definitely had near continuous ME/CFS. It was like my immune system eventually got overwhelmed. I also noticed pronounced PMS with my cycles.
Now, yesterday I had my visit to Stanford’s Chronic Fatigue Clinic and so I will give a short report. Seems as if Stanford had been using their patient population to study the viability of using low dose naltrexone and/or apriprazole (Abilify) and is tabulating the results. I asked the P.A., what is next on the horizon and she said that they were going to look closer at the patients who had Ehlers-Danlos Syndrome–since so many seem to have that also. I think they might be working on a symptom app too.
I will be going off Abilify since it appears that it might have made my fatigue worse. Nothing else to try excepting continuing with my levothyroxine titration. Oh yeah, hats off to you Cort–I will be getting a HHV-6A as per your article about NTIS.
I’m not sure they have a plan for what to look at next as they seem to be working to come up to speed on EDS and all its co-morbidities. The P.A. acknowledged the entwinement between POTS, fibromyalgia, EDS and ME/CFS.
I stayed way late with her and spent a lot of time giving her research links and such.
So, that is my report. Thanks for bringing up childhood chronic fatigue Cort, as I think it has been quite overlooked! Hope you are feeling well enough!
https://www.chicagotribune.com/lifestyles/health/ct-life-tt-myalgic-encephalomyelitis-diagnosis-in-children-20200213-20200213-dyqxu6i3hvg6jhwsfzvktryuxq-story.html
Article from the Chicago Tribune featuring the Jason study.
Great article – so well fleshes out the problems kids with ME/CFS can have. I added some quotes from the article and a link to the article on the blog. Thanks for pointing that out 🙂
CDC call on Pediatric ME/CFS study going on right now – https://www.cdc.gov/me-cfs/programs/meetings.html. It will be transcribed.
I would think that having experienced measles, mumps, chicken pox, etc… might also be significant, as some of these were common for us older folks. Perhaps in the next survey a text option could be included for people to add in relevant info?
Friends of our family were diagnosed with hepatitis when we were children, so our well-water and all of our family were tested (it came out negative for us, thank heavens). I remember it was quite tense until the results came back. It was quite serious for them, with apparent long-reaching consequences. Also something that might be considered for measurement.
I thought that, too. I’ve had chicken pox 3 times!
Agree Anne. I had Chicken Pox very severely as a 7 y o
– was off school for two months – and don’t think I ever completely recovered. I developed headaches, tinnitus, co-ordination problems, post-exertional malaise type problems amongst other things in the year afterwards. My current doctor believes I have a lot of nerve damage from viruses.
My name should read Jane O’Callaghan -Sorry!
I developed ME/CFS at 20yrs of age, however at age 8-9yrs I was diagnosed with “CFS” or a CFS-like illness. I was mostly recovered from this within 2yrs though. It is important to note that “CFS” was not widely understood (in Australia in 2003), and I was being treated by people who just considered it a Post-infectious-malaise.
It is hard to know for sure if it was an early development of ME/CFS for me, that then went into remission until age 20.
Hi Cort, I began about the age of 7 back in 1959 w/health problems: diagnosed w/Rheumatic Fever; had mononucleosis(2x)- high school & art school; Epstein Barr; diagnosed w/FMS 1980, followed by CFIDS; ME.
Remember being so tired & napped even when my siblings & peers were playing. Had so many colds & terrible sore throats including Strep.
At 12 yrs. I had exploratory surgery for abdominal pain & started my menstruation w/heavy bleeding, cramping, & abdominal pain.
Life for had/has consisted of bloodwork, vitals, x-rays, hospital observations & procedures.
My family were actively involved in outdoor activities – hiking, climbing, etc. I remember how difficult it was for me to keep up w/them, my mother would have to sit w/me to rest & w/exertion I would have very sore throats & exhaustion. I know how impatient they became w/me. Maybe that’s when my anxiety & depression began followed by OCD/hair pulling. No one could figure out what was wrong w/me.
Had difficulties during my educational years & was absent so many times over those years.
I tried so hard & managed to graduate in top percentage of my class. Math was my most difficult subject followed by reading comprehension, test-taking, excessive fatigue, & sensitive to cold temperatures, easily distracted, confusion & word pronouncing. My safe & comforting haven, spiritual, & most constant companion in life – art, music, & photography.
There were always periods of waxing & waning of my symptoms which determined how functional I could be at the time, so I did have accomplishments but was most challenging for me.
This has taken me a very long time to write because of the many memories & emotions I am feeling about my childhood & young adulthood.
Ann,
On reading your comment and others above, I felt so sad at the injustice of what you endured as a child and then subsequently as an adult.
Being misunderstood is (I believe) extremely isolating – which just makes everything so much more difficult.
Bringing that all together, acknowledging it, and writing it down, can be a challenging process…
I send good wishes to you and all children, from the past and present, who lived/are living in some sort of exile. ?
I was thinking if you were breast fed or not, might be a relevant question? I was the c section and was not breast fed either. I firmly believe this could have led to my ill health.
I’d also add chicken pox (had it 3 times, once age 7, once aged 23 and once aged 42, the research team at University College London, where I took part in a trial were very interested in that!), measles, scarlet fever, pneumonia as well as broken limbs.
Why aren’t there any questions about family history? My mother and I have both been diagnosed with me/cfs. She is house bound, I’m a bit better. We believe my grandmother had it as well but was never diagnosed. I’m very concerned for my children. Especially my daughter who is now 4 years old.
Hey Cort….It might be hard for me and others to know when ME/CFS started, since for me, I have been diagnosed with a mild form of FXTAS (Fragile X grandparent’s carriers) Syndrome which produces its own symptoms: ADD, insomnia, headaches, gut issues, depression, Fibromyalgia, dizziness, unsteady gate, and Parkinson-like tremors…Dr Randi and Paul Hagerman wrote a paper on the likely effects of even being a carrier can show certain signs of the disease when one is maturing from infancy through to adult…If this is the case for most syndromes, no wonder the medical research groups are having a hard time trying to find the start point or points!…
I suffered frequent attacks of ulcerative colitis for over 20 years before my me/CFS diagnosis.
I had a neck injury about 28 years before diagnosis, which, in later years needed attention every 3 to 4 months.
I came down with ME/CFS in 1963 aged 13. When I began taking much longer over homework and sleeping most of the weekend my parents thought I was just being a teenager. It was my teacher who realized I was ill. I was taken to many doctors to no avail. My first year at high school went really well, but it was all downhill after that as I struggled to understand the teachers and stay awake. I also struggled to initiate conversations with people and found myself alone a lot. My dream of going to university was over. Later I was sacked from every job for slowness or left before the axe fell. After four years of this I was fortunate enough to became self employed , working part time at home when I was most able. For 27 years I had frequent nightmares in which I was still stuck at school at my then age. They only stopped when I was finally diagnosed at age 40.
“…The Centers for Disease Control and Prevention (CDC) adds that infectious mononucleosis is most common among teens and young adults (especially college students). It says that “at least” 1 out of 4-teens and young adults who contract the EBV will develop infectious mononucleosis…”
(https://www.activebeat.com/your-health/6-infectious-facts-about-mononucleosis/)
This would support that Infectious mononucleosis-triggered CFS/ME would commonly start in one’s teen years…
Just wanted to mention a few other things to consider being possibly related to childhood ME/CFS;
being a DES daughter (exposure to diethylstilbestrol),
PCOS (Polycystic Ovarian Syndrome),
‘benign’ congenital heart abnormalities, and
family history of autoimmune disorders.
Mine started after prolonged recovery from glandular fever in my early 20s. My daughter was formally diagnosed aged 13, although, after taking an extensive history, the consultant was pretty sure that she had been symptomatic since the age of 9. It has been very difficult for her in so many ways – education, isolation, friendships and anxiety. She is having therapy at the moment, aged 25, to help her come to terms with the limitations imposed on her life by this horrible disease.
This is a good idea for a survey, Cort.
A couple of years ago, I did a poll in the Mold Avoiders Facebook group (composed of people with ME/CFS/CIRS/Lyme/etc. pursuing mold avoidance) and asked them what symptoms they had seen in their own kids.
A lot of the ones that seem to me unusually high in that poll seem to be related to the ones that came up as unusually high in your poll results so far.
https://paradigmchange.me/wp/childrens-symptoms-poll/
So I think that we may be getting closer to the point of developing a list of risk factors to look for in kids.
And that a lot of these risk factors may be related to mold exposures, which people could be avoiding fairly easily at an early level of illness when the reactivity level has not gotten so high.
So this seems like a pretty promising line of inquiry to me.
What I’d love to see here is a control group. This goes for L. Petrison’s survey too.
Many of these symptoms are very common and/or vague. So many non-CFS people have had many of them, but their lives seem quite normal. Most of these I didn’t have and yet I’m an adult with CFS.
It also seems that the most common symptoms (50% and up) on Lisa’s list and those that are high % on Health Rising’s list are quite different.
As a child I had tonsillitis alot. They kept saying if I got it one more time they were going to take them out bt they never did&as an adult my tonsils well most my lymph nodes almost always seem swollen&tender. As a baby I got pneumonia 3 times. The 3rd time in both lungs it almost killed me. I also got sent home alot in grade school because I’d get migraines&throw up until high school when I started my period which was horrible. I had to be put on birth control pills at 15 to be manageable. I was severely anemic which didnt get better until about years ago when I got an ablation&stopped having them. I also have always had a sensitive stomach. I couldnt ride on Merry go round because it would make me get sick. I also got car sick alot..I still do some but not as bad. I was also told I was allergic to dust mites when I was little. I have an 11year old daughter&I’m so afraid she might have it because shes always tired&always sick with colds sore throat&has back&neck pain
I would also get car sick too. The back seat of a big car or bus was a nightmare. Diesel made it worse! And I could never go on those spinning tea cup rides at the fairground.
I also had an allergic reaction to house dust and hay – like horses eat. I would emerge from the hay barn with a runny nose and itchy, puffy red eyes. But this seems to have gone now.
I would have experienced a few things on HR’s poll as a child – but I didn’t become unwell until I had Glandular fever/ Mono/Epstein Barr at 17.
However I recovered fairly well, though I was tired through most of my 20’s and if I became run down my glands would swell and my throat would become sore.
By my 30’s and up to mid 40’s, I was generally in good health. That all started unravelling in my later 40’s after intense stress and the flu. I then started accumulating most of the health issues listed (including and above)18% blood sugar in the poll link from Lisa Petrison PhD.
However I believe those symptoms were in response to my food intolerances and not mould.
I do believe there seem to be subsets of us. I don’t have FM and generally don’t have muscle issues. I have immune, stress response and brain issues.
I echo others who had bouts with bronchitis as a child (treated with penicillin). My mother thinks I had rheumatic fever as well. Definitely measles, “German Measles,” chicken pox and mumps. I had pain in my legs around ages 10-12 and was told it was “growing pains.” Also enuresis until age 9 and lots of difficulty waking up in AM. In my 50s was diagnosed with Upper Airways Obstruction and borderline Narcolepsy, so sleep disorders for sure. Thanks for exploring our childhoods.
I think you need to have CEN or childhood emotional neglect in your list – I would think that is important. Also Emotional abuse and/or narcissist parent.
The KidsHealth link at the beginning of this post still recommends GET for pediatric ME patients! When will stigma give way to actual science?
Maybe Liz, when/if the UK’s review of GET/CBT rejects those treatment options for ME/CFS in October 2020, then hopefully the medical profession will, at least, become aware that the thinking behind these treatments is fundamentally flawed and stop recommending them…
The items important in my situation were not part of the questions, such as being pumped with double vaccines (US and Africa) and African medications, vomiting a lot as a child, and a strange sleep in Africa one unforgettable day I could hardly wake up. They called me puny. Vomiting should be on the list, don’t you think?
I first was ill in my teens, after frequent tonsillitis, many antibiotics when I was even younger, terrible migraines…… kind of came out of it in my 20s although pushed myself very hard and had to frequently have naps…… it hit again when I was 32 after having my daughter….. been ill ever since. My 8 year old is now ill too, she has been for a year after having a urine infection, given antibiotics and then an awful chest, throat and headache virus….. she’s never recovered…… I’m in uk and no one will diagnose her, I’ve had to remove her from school and it’s all pretty awful. We so desperately need to find out the cause of this desease and find a cure!!
Cort, my responses included Depression/Anxiety but it wasn’t checked on the results.
I’m really not surprised that I have Fibro and M.E. I’ve had panic disorder since I was 12 and had my first breakdown. I’ve had several breakdowns over the years. I’m now 57. Then in my late 20’s Depression started creeping in until I had a severe clinical depression aged 41. I’d had ‘growing ‘pains in my legs as a child. Fisrt Fibro symptoms were in 1992 after the birth of my daughter and first M.E symptoms in 1999. Shrugged off by psychiatrist. I think your body just wears out if its prone to it. I also think my Mum had a milder form of Fibro and she did have Polymialgia. My daughter also has M.E so theres def some genetics aswell at play
I was diagnosed at the age of 39, while still living in Australia. The doctor hypothesised that i’ve had it since hepatitis A at age 7. That fits. I remember in secondary school trying to explain to my father that it was difficult standing upright because I felt all droopy. He told me it was backache. i said it was not an ache but droopiness. ‘Yes, that’s what back ache is.’ (I have since wondered if he too had ME, because of a number of other issues. My mother just says that he was lazy! I suspect either ME or the accumulation of years of working night shift.) At least it allowed me to get out of school sport on occasion! No one thinks to use the term ‘exhaustion’ around a moderately-ill person. I can remember in primary years thinking ‘I wish i could die. Oh no, my birthday is next week. it would be good to live long enough to open my presents and then die.’ This is the feeling I get now whenever I am over-exhausted. That speaks to me of a child who was struggling and could see no respite. I don’t know how to fill out the questionnaire because I don’t really have a diagnosis for those early years, only a gut feeling.
I had congestion in the lungs and gastroenteritis as a 9 month old, no idea how long ill for, nobody to ask, I know I almost died. I also had emotionally abusive much older brother who used to hit me and tell me in nasty way to be quiet if I tried to join in a conversation, I never learnt how to handle arguments wel,
he was never corrected by parents . Lot of pressure on me at school to perform well, private school then scholarship to private grammar school, long journey to get there, my day would be 7.10am leave house, catch 4 buses to school, 9am-4pm lessons, then 4 buses home, getting home between 17:30 and 18:00, followed by couple of hours’ homework. So stressed by time sat GCE “O” levels GP gave me liquid diazepam to keep me calm, just remember terrible pressure from my mother to succeed all the time. I suspect these things will have affected my general health. Was also blamed at age 16 for being cause when my Dad had heart attack.
Hi Cort, I just wanted to mention some childhood irregularities that seemed to forshadow my getting ME/CFS. I had 3 day measles 3 times: as a young child, when I was in high school and once when I visited my older sister at college, then again in my 3rd year at college.
I also had mumps, whooping cough in 7th grade, of couse german measels, and mononucleosis twice: the 1st quarter of my 1st year in college, then again in my third year. I had tonsilitus several times before they were removed at which point I became asthmatic at 21. I have had lime’s disease, too, after adopting a dog with ticks from chicago. (I live in Arizona). I have had shingles with occasional mild reoccurances twice. In the80s, my Mollucan Cockatoo bit thru my hand, severing nerves and my body cut off the bood to that arm (thinking I was bleeding to death. The hand and arm turned red, then purple and gray. I had to fly to houston for daily injections into the ganglion nerve coming out of my brain. The injections were done thru my neck, stopping the faulty nerve signals from my brain before my arm and hand died. 10 years ago I got valley fever shortly after a surgery. I’ve had a lifetime of illness…it astounds even me. Only my doctors have seen this list, and it astounds them as it does me. In order to get disabilty after being clobbered over the head with CFS I had to have my father witness and have notarized my health history. Lol. It sounds dreadful and much of it was and often still is as I’ve aged. I can’t really complain because, an old hippy, I’ve lived fully when I can, traveling, experiencing new places and things, 2 wonderful chareers: mechanical design, owned a huge theatrical costume shop and got to dress people fuuny and make fabulous costumes (a velosaraptor that travel mall to mall after Jurassic Park, letting kids sit on his lap. AWESOME! and I’ve published seveal novels…easy to writ while i’m lying in bed for weeks and months. There is still hope despite a really messed up immune system. ? Good Luck to everyone during this unbelievably sad and scary time. Chris Chegri
Hey Cort. This is some great stuff. Thank you!