Can Simple Blood Tests Help to Identify Chronic Fatigue Syndrome (ME/CFS)?

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I had mono at 38. and down with ME at 59. Probably not much correlation there.
Honestly you really don't know. It takes multiple sclerosis several decades to manifest itself after infectious mononucleosis.
 

Katie

Active Member
I've had many viruses and bacterial infections (IM, Epstein Barr, viral and bacterial pneumonia, giardiasis-breakout at local pool and others).
I remember being very sick in grade 11-over a month, then having intermittent "spells" of exhaustion. I was very active for many years (cycling, swimming, hiking etc) but my max ability hit a ceiling which I could not get past and could never understand it. I'm not a big person but that should not have mattered. As the years of my adulthood spun by my ability to maintain exercise (as in muscle power) dropped dramatically until I could barely walk which led to a dx of fibromyalgia-which really was ME but not dx until 3 years ago.

So, regarding the article-how is it possible to find the initiator of ME considering many people have had more than one viral or bacterial infection or is it more of an indicator depending on blood results over a period of time? Do cortisol and/or hormonal levels get screwed up for months or years that leads to ME, why some and not others? Genetics? Shouldn't all family doctors be testing blood over a period of years those that have had an acute IM or Epstein Barr etc. That would lead to earlier ME dx.
 

Jenny Horner

New Member
Something this post made me think is: should there be more publicity about the normal course of mono and when this transitions into ME? I started with glandular fever/mono in 1998 but because it is thought to linger in a lot of people (as mono not considered ME) it actually took 3 years of boom and bust and then dramatic worsening at 3 years before I made a fuss with doctors. It may sound a bit weird now but that was even in the context of my sister having severe ME at the time! It was more the case that her ME actually put me off the scent as she had started off consistently severe, not with the boom and bust I experienced.

Should doctors be saying to patients to come back if they don't feel well after x months with mono? Are there symptoms which are definitely ME and never simple mono? For me I don't really know when ME took over from mono. Experientially it felt like the mono just didn't go. According to blood tests I had very clear EBV (mono) in 1998 and later tests showed I'd had it (antibodies?) but the virus hadn't reactivated.

My cardiologist thinks my POTS was also triggered by mono in 1998. That took until 2014 to get diagnosed!
 

Sarah R.

Active Member
I had mono at age 13 and my immune system hasn't worked properly since then. By that I mean that I tended to catch more viruses and had a harder time getting rid of them than my peers. Usually if I get a cold or other kind of virus, it repeats. The first time I have it in a full-fledged way; the second time is less bad, but follows the same course; and the third time is less bad than the second. So a 10-day cold or flu will last for a month. I'm phobic about being around anyone who is coughing or sneezing.

I got fibromyalgia when I was 51, which I could handle and still work because mine manifested primarily as aches and pains that Lyrica helped. However, when I developed CFS/ME at age 53, it was completely debilitating. My CFS/ME symptoms remind me a lot of having mono. And I'm helped by taking 3g of acyclovir daily. If I don't overdo it or have a secondary viral infection, my glands aren't even swollen. And that's what I call health. ;)
 

ninibmr

New Member
How great it would be if a doctor could give a teenager with lingering fatigue after infectious mononucleosis/glandular fever a simple blood test to determine if she had chronic fatigue syndrome (ME/CFS).

[fright]View attachment 1388 [/fright]She and her parents might not like that result but at least they'd have an answer to their daughters health issues and they could chart their course from there. The doctor, of course, would be quite relieved to have an answer his patients mysterious problems. He or she could study up on how to treat ME/CFS or (hopefully) send her on her way to a doctor who could (instead of a psychiatrist who can't.)

Significant amounts of stress would be relieved on both ends and both ME/CFS as a disease and the patient would be validated.

That's what this Renee Taylor/Nancy Klimas group (Broderick, Klimas, Fletcher) and Suzanne Vernon recent study tried to achieve. They tracked almost 300 adolescents diagnosed with infectious mononucleosis in the Chicago area for 24 months and gave the ones who got sick and a handful of the ones who recovered very simple blood, saliva and urine tests. (See attachment)

This study was definitely a gamble; nobody has ever found that standard blood tests tell us anything about chronic fatigue syndrome.

Harvey JM, Broderick G, Bowie A, et al. Tracking post-infectious fatigue in clinic using routine Lab tests. BMC Pediatrics. 2016;16:54 doi:10.1186/s12887-016-0596-8.

Results

There's nothing like consistency in research. This study underscored and validated what the Dubbo studies found some ten years ago; that if you come down with infectious mononucleosis/glandular fever as an adolescent you, unfortunately, have a pretty good chance of coming with ME/CFS.

At six months 13% of them met the criteria for ME/CFS (CCC criteria tweaked by Jason), at 12 months 7% still did, and two years later 4% (@12 adolescents) were still sick. (Compare that with 11% and 9% at six and 12 months in the Dubbo studies).

It's not clear if females are more likely to get IM than males but they were definitely hit harder by it. At six months 90% of the ME/CFS adolescents were female; at 12 months 100% were.

Blood, Saliva and Urine Test Results

The results of 59 standard laboratory tests in 13 young women with ME/CFS with those of healthy controls indicated that some differences were found and those differences highlighted the HPA axis and hormones. Unfortunately few of the abnormalities found persisted past one time point.

Reduced levels of glucose and ACTH at six months suggested that the HPA axis was sputtering. ACTH triggers the production of cortisol by the adrenal glands and is produced in response to biological stress.

The authors suggested that a cytokine (Il-6) produced during an infection could be promoting hypoglycemia in these young ME/CFS patients. Older ME/CFS and FM patients will remember that hypoglycemia was all the rage in alternative health circles a couple of decades ago.

Levels of estradiol, the primary sex hormone in women, tanked at 12 and 24 months. Those two findings fit somewhat with Broderick's past modeling work which highlighted the HPA axis and the hormonal system in ME/CFS.

[fleft]View attachment 1389 [/fleft]Broderick's work suggests that female hormones may play an important role keeping female ME/CFS patients stuck in a suboptimal physiological state. His recent model suggested that women with ME/CFS fall into steady state which includes decreased cortisol, increased estradiol and increased anti-inflammatory activity.

The authors noted that an increase in neutrophils at 24 months could also reflect hormonal changes in ME/CFS women. Plus a close but non-significant tendency towards increased thyroxine levels (T4) at six and twelve months (p<.06/ p<.07) suggested thyroid gland involvement. Ultimately the study suggested that immune changes during infection may be effecting the HPA and HPT axes and female hormones.

Conclusion

This study was probably always something of a crap shoot, but it did underscore possble HPA axis and hormonal problems in ME/CFS. If validated in larger studies and with other disease cohorts it could provide the opportunity for doctors to use simple blood tests to quickly tell who has ME/CFS.
I'm also a EBV survivor. I had a particularly bad time of it when I was 40. After that, I've never felt really well. I began fibro/CFS symptoms about 10 years later and am still dealing with it at 64. Yet, there are still many doctors who either don't believe in ME/CFS or have no idea how to treat you. Why is it that the few doctors really trying to help are considered outside the system so that insurance won't pay for it? So frustrated.
 

Dee VanDine

Member
Thats very interesting! I had mono at 16 but didnt develop ME until I was 21..would b interesting to see how many patients had mono at some point in their life.
i had mono, probably around the age of 16, then the CFS onset at age 30ish. fibro diagnosis came some time later. at this point, it's mostly a blur.
 
I have been searching for an answer like all of us. I had Histoplasmosis in 1982 and developed RA not too long afterward, which is one of the possible complications. As time went on I developed ME/CFS, Fibro, degenerative disc disease, Raynaud's, spinal stenosis, sciatica, scoliosis, osteopenia (which hasn't been checked in 15 years, so possibly osteoporosis because every time I fall I break a bone), nerve involvement... a lot of pain and loss of mobility to say the least. It is suspected I also have Lupus, but that runs in my family.

I have always believed that having had Histo has something to do with all of this painful and degenerative "stuff." Doctors sort of ignore the question because there is simply no answer. But sometimes we just know our own bodies!

If anyone else hears of a patient who had this, I sure would like to know. The problem is many people get it but not severe enough to notice. It can simply act like the flu unless other parts of the body become involved (organs) or it lasts and causes one to be hospitalized. I had a fever for six months and was hospitalized for about two weeks in isolation. I couldn't sleep with any of my joints bent or it was hell trying to unbend them upon wakening.

The CDC diagnosed it after it was thought we (134 people) had Legionnaire's Disease. I lost 25 pounds in 10 days. One person lost much more and almost died.

If you're not familiar with it (prepare to be grossed out), it comes mostly from the Mississippi River valleys where it's wet, and you get it by disturbing bat poop and breathing in the spores. We got it at an outdoor wedding on Lake Minnetonka in Minnesota. There was a law suit because public buildings, such as the church where we were, are supposed to keep everything clean. The poops were found in the rafters outside the church. I remember getting a check for $1,000 a couple of years later. It didn't do much for us since my health insurance company went out of business during my hospital stay and did not inform their customers.

Sorry for writing an entire story if you've gotten this far :)
 

GrammaLinda

Active Member
How great it would be if a doctor could give a teenager with lingering fatigue after infectious mononucleosis/glandular fever a simple blood test to determine if she had chronic fatigue syndrome (ME/CFS).

[fright]View attachment 1388 [/fright]She and her parents might not like that result but at least they'd have an answer to their daughters health issues and they could chart their course from there. The doctor, of course, would be quite relieved to have an answer his patients mysterious problems. He or she could study up on how to treat ME/CFS or (hopefully) send her on her way to a doctor who could (instead of a psychiatrist who can't.)

Significant amounts of stress would be relieved on both ends and both ME/CFS as a disease and the patient would be validated.

That's what this Renee Taylor/Nancy Klimas group (Broderick, Klimas, Fletcher) and Suzanne Vernon recent study tried to achieve. They tracked almost 300 adolescents diagnosed with infectious mononucleosis in the Chicago area for 24 months and gave the ones who got sick and a handful of the ones who recovered very simple blood, saliva and urine tests. (See attachment)

This study was definitely a gamble; nobody has ever found that standard blood tests tell us anything about chronic fatigue syndrome.

Harvey JM, Broderick G, Bowie A, et al. Tracking post-infectious fatigue in clinic using routine Lab tests. BMC Pediatrics. 2016;16:54 doi:10.1186/s12887-016-0596-8.

Results

There's nothing like consistency in research. This study underscored and validated what the Dubbo studies found some ten years ago; that if you come down with infectious mononucleosis/glandular fever as an adolescent you, unfortunately, have a pretty good chance of coming with ME/CFS.

At six months 13% of them met the criteria for ME/CFS (CCC criteria tweaked by Jason), at 12 months 7% still did, and two years later 4% (@12 adolescents) were still sick. (Compare that with 11% and 9% at six and 12 months in the Dubbo studies).

It's not clear if females are more likely to get IM than males but they were definitely hit harder by it. At six months 90% of the ME/CFS adolescents were female; at 12 months 100% were.

Blood, Saliva and Urine Test Results

The results of 59 standard laboratory tests in 13 young women with ME/CFS with those of healthy controls indicated that some differences were found and those differences highlighted the HPA axis and hormones. Unfortunately few of the abnormalities found persisted past one time point.

Reduced levels of glucose and ACTH at six months suggested that the HPA axis was sputtering. ACTH triggers the production of cortisol by the adrenal glands and is produced in response to biological stress.

The authors suggested that a cytokine (Il-6) produced during an infection could be promoting hypoglycemia in these young ME/CFS patients. Older ME/CFS and FM patients will remember that hypoglycemia was all the rage in alternative health circles a couple of decades ago.

Levels of estradiol, the primary sex hormone in women, tanked at 12 and 24 months. Those two findings fit somewhat with Broderick's past modeling work which highlighted the HPA axis and the hormonal system in ME/CFS.

[fleft]View attachment 1389 [/fleft]Broderick's work suggests that female hormones may play an important role keeping female ME/CFS patients stuck in a suboptimal physiological state. His recent model suggested that women with ME/CFS fall into steady state which includes decreased cortisol, increased estradiol and increased anti-inflammatory activity.

The authors noted that an increase in neutrophils at 24 months could also reflect hormonal changes in ME/CFS women. Plus a close but non-significant tendency towards increased thyroxine levels (T4) at six and twelve months (p<.06/ p<.07) suggested thyroid gland involvement. Ultimately the study suggested that immune changes during infection may be effecting the HPA and HPT axes and female hormones.

Conclusion

This study was probably always something of a crap shoot, but it did underscore possble HPA axis and hormonal problems in ME/CFS. If validated in larger studies and with other disease cohorts it could provide the opportunity for doctors to use simple blood tests to quickly tell who has ME/CFS.
Definitely not a crap shoot. I had glandular fever at about age 10. Mono about 19 yrs. When I developed the fatigue and pain, a Rheumatologist dx CFS due to positive EBV findings. Up and down hill until a severe setback crashing with even more problems starting last Oct. at the age of 70. I firmly believe EBV has latched onto my system and flares up. Each time worse than before.
 

ritasheart

Member
I had severe mono age 18, 1969, and I never totally recovered. My sudden and severe onset of ME/CFS was in 1986. Over the years, I have "met" many patients who had had mono prior to ME/CFS onset.
 

Merida

Well-Known Member
@ritasheart
Glad to see a new comment on this important topic! My son , age 5, had a well- documented case of EBV in 1986. No mononucleosis, though. But 2 weeks after initial illness, he developed many neuro symptoms - severe urinary frequency, irritable bowel, pain in fingers/toes, sleep problems, and more. Still having issues at age 37, and running his own business and have 2 little children is crashing him.

In more recent years I have often thought that the virus he had in 1986 was a new type of EBV - not the kind so many people got in the 1960s, and eventually got well. I read about research using EBV to carry genetic info into the cell nucleus - as a genetic engineering vehicle. Also, whispers of EBV as a biological weapon.
 

lotadisa

Member
Boy is that a knotty issue :). Thanks for bringing it up...It's pretty clear that hormones are involved in some way.
There's nothing like consistency in research. This study underscored and validated what the Dubbo studies found some ten years ago; that if you come down with infectious mononucleosis/glandular fever as an adolescent you, unfortunately, have a pretty good chance of coming with ME/CFS. Tutuapp 9Apps ShowBox
 
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GrammaLinda

Active Member
There's nothing like consistency in research. This study underscored and validated what the Dubbo studies found some ten years ago; that if you come down with infectious mononucleosis/glandular fever as an adolescent you, unfortunately, have a pretty good chance of coming with ME/CFS. Tutuapp 9Apps ShowBox
I had glandular fever in 5th grade and full blown mono at 19.
 

GrammaLinda

Active Member
@ritasheart
Glad to see a new comment on this important topic! My son , age 5, had a well- documented case of EBV in 1986. No mononucleosis, though. But 2 weeks after initial illness, he developed many neuro symptoms - severe urinary frequency, irritable bowel, pain in fingers/toes, sleep problems, and more. Still having issues at age 37, and running his own business and have 2 little children is crashing him.

In more recent years I have often thought that the virus he had in 1986 was a new type of EBV - not the kind so many people got in the 1960s, and eventually got well. I read about research using EBV to carry genetic info into the cell nucleus - as a genetic engineering vehicle. Also, whispers of EBV as a biological weapon.
As far as I know glandular fever, mono and EBV are all the same. Just being renamed.
 

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