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

Cort

Founder of Health Rising and Phoenix Rising
Staff 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]
Doctor-puzzled.jpg
[/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]
-Blood-in-test-tubes-and-result.jpg
[/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.
 

Attachments

I got sick at age 56, the same time I was going through menopause - the other end of the female hormone change. That was almost 8 years ago and I'm getting worse
 
I had mono at 16 and was out of commission for months. It took four years before I was able to accomplish as much as my friends and classmates. Even then, from college graduation to diagnosis in my mid-40s, I never could keep up the pace of other women of my age and class. I always needed more recovery time from basic life activities and took a lot of "personal days" for recuperation. I believed what I was told by doctors, bosses, and friends, that I was just lazy or unfocused or unmotivated. It wasn't until I became completely dysfunctional about ten years ago (shortly after diagnosis) that I began seeing how these earlier states were disease related.
 

Katherine Autry

Active Member
I had mono at 16 and was out of commission for months. It took four years before I was able to accomplish as much as my friends and classmates. Even then, from college graduation to diagnosis in my mid-40s, I never could keep up the pace of other women of my age and class. I always needed more recovery time from basic life activities and took a lot of "personal days" for recuperation. I believed what I was told by doctors, bosses, and friends, that I was just lazy or unfocused or unmotivated. It wasn't until I became completely dysfunctional about ten years ago (shortly after diagnosis) that I began seeing how these earlier states were disease related.
I had a similar experience. I don't remember specifically having mono, but I do remember having constant infections. I also could not keep up the pace of others and it got worse as I got older. It became very noticeable in my late 20s after the birth of my second child (hormones and stress?) and I developed Hashimoto's and anemia. Now in my 50s, after reaching a state of almost complete disability, I can look back and see how that overall sluggishness and need for extra rest really stole the vibrant life I once enjoyed and allowed me only a "shadow" life. I can see that it was the progression of this lifelong disease, and the thyroid disease was just the first organ to fail.
 

Cecelia

Active Member
Having normal hormone levels is essential for a balanced system. These studies point to the need for these hormone levels to be taken in those with ME/CFS symptoms, whatever the initiating cause was, and for those hormones to be replaced. For years I have benefited from supplemental estradiol and cortisol, as well as additional thyroid hormones. There is fear about providing any cortisol, or, for older women, providing any additional estradiol, because of the problems seen when there are states of excess, but subnormal circulating levels which often happen with ME/CFS are very problematic and damaging too. Let's get over the prejudice about supplementing too low levels! The reason the prejudice exists is because this problem is uncommon in the general population, but with ME/CFS, so much about our systems is uncommon. We need help to bring up our systems to a normal functioning level.
 
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It's too bad that there isn't some national data bank of research that people like Klimas could check before taking on such a study. Dr. Huber at Tufts has been studying this same group of adolescents for years and working with a HERV gene (an ancient herpes virus that is incorporated into our DNA) that she believes may hold a key to why this small number of girls go on to develop CFS. Of course she has been studying lots of other data as well in the same girls....
 

weyland

Well-Known Member
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.
Neither this study nor Dubbo said anything about ME. Ramsay was pretty adamant that post/chronic mononucleosis is not ME.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I had mono at 16 and was out of commission for months. It took four years before I was able to accomplish as much as my friends and classmates. Even then, from college graduation to diagnosis in my mid-40s, I never could keep up the pace of other women of my age and class. I always needed more recovery time from basic life activities and took a lot of "personal days" for recuperation. I believed what I was told by doctors, bosses, and friends, that I was just lazy or unfocused or unmotivated. It wasn't until I became completely dysfunctional about ten years ago (shortly after diagnosis) that I began seeing how these earlier states were disease related.
Your ability to fight off Epstein-Barr virus is greatly reduced by the time you're an adolescent. That's why it often takes so long to get over and is probably why it having infectious mononucleosis increases your risk of coming down with ME/CFS immediately and multiiple sclerosis years later. I imagine that if they did the studies it would greatly increase the risk of coming down with ME/CFS years later and that that risk would be highest in people who had the hardest time fighting off the virus.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Neither this study nor Dubbo said anything about ME. Ramsay was pretty adamant that post/chronic mononucleosis is not ME.
I guess one question is how do you quantify ME? Do you know why he didn't believe post/ mononucleosis was not ME? (Because it's not caused by an enterovirus maybe?)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff 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'll bet its quite high. I'm surprised no one has looked at that.

By the way IM can apparently manifest in a gradual manner and when it does it produces stiff painful muscles, fatigue etc. if I remember correctly. Given that I think I'm a pretty good candidate...
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Having normal hormone levels is essential for a balanced system. These studies point to the need for these hormone levels to be taken in those with ME/CFS symptoms, whatever the initiating cause was, and for those hormones to be replaced. For years I have benefited from supplemental estradiol and cortisol, as well as additional thyroid hormones. There is fear about providing any cortisol, or, for older women, providing any additional estradiol, because of the problems seen when there are states of excess, but subnormal circulating levels which often happen with ME/CFS are very problematic and damaging too. Let's get over the prejudice about supplementing too low levels! The reason the prejudice exists is because this problem is uncommon in the general population, but with ME/CFS, so much about our systems is uncommon. We need help to bring up our systems to a normal functioning level.
Boy is that a knotty issue :). Thanks for bringing it up...It's pretty clear that hormones are involved in some way.
 

weyland

Well-Known Member
I guess one question is how do you quantify ME? Do you know why he didn't believe post/ mononucleosis was not ME? (Because it's not caused by an enterovirus maybe?)
From his last paper on ME:

Differentiation of the ME syndrome from other forms of post-viral debility
In our opinion, two major errors are responsible for the present confusion surrounding the case definition, aetiology and diagnosis of ME.9 First, there has been a failure to distinguish the syndrome from post-viral debility following Epstein-Barr mononucleosis, influenza and other common fevers. Compared with ME, these lack the dramatic effect of exercise upon muscle function, the multisystem involvement, diurnal variability of symptoms and prolonged relapsing course. Laboratory tests can distinguish chronic mononucleosis'" and other infections which, as our results show, may occasionally co-exist with ME and, by their immunosuppressive effect, precipitate relapse. Second, there has been a failure to recognize the unique epidemiological pattern of ME, which, from earliest accounts, has lead to confusion with non-paralytic poliomyelitis.
This was reflected in James Mowbray's PVFS cohort as well. He had non overlapping enterovirus and EBV groups and noted that the EBV group lacked the muscle abnormalities that the enterovirus group had.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
From his last paper on ME:



This was reflected in James Mowbray's PVFS cohort as well. He had non overlapping enterovirus and EBV groups and noted that the EBV group lacked the muscle abnormalities that the enterovirus group had.
Appreciate it...

I wonder about if some of those changes showed up in people with long term problems after IM - the ten percent or so who did not recover? I imagine the multisystem involvement was there; don't know about muscle functioning....
 

6String

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.
That would be a good survey question. I had Mono twice - at 13 and 16 - and got hit with ME at 62, after a bout of mycoplasma pneumonia.
 

Karmin

Active Member
My onset was immediately after suspected mono, major surgery whilst still unwell, and acute untreated surgical premature menopause at age 33.
 

BusyTVI

New Member
I had IM twice, once right after I turned 18 and had to drop out of college while my Mom had a fit. Liver and spleen involved enough that sitting at 90 degree angle not possible. Then 4 years later it hit again with same liver and spleen involvement. Health clinic argued that I couldn't have had it earlier, previous doctor said I couldn't have it the second time, so I had records shared. Both were considered to be serious cases; after the second go round, I never did return to previous levels of activity, socialization, or mental alertness without tremendous effort. In those years, it was considered psychological reaction to get further attention (but family very strict and resting or taking needed time to heal the second time not an option, so my drive was to push through at all odds); all tests showed various problems almost everywhere, but no answers, so had to be all in my head despite pushing myself hard and bringing proof to doctors.
 

Margo

New Member
This is all sounding so familiar... I had chicken pox at 6 months, shingles when I was 10, myocarditis (viral infection of heart) although they think I had mononucleosis prior to the mono in my mid twenties, Graves disease when I was 29 and then things went slowly, relentlessly downhill. Able to do less dancing, bike riding, a week off work now and again with flu like symptoms. Harder to climb stairs and it never got any easier and then 1/2 time at work. Diagnosis of ME in 2004 but I do think I have had "it" whatever you want to call it most of my life.
 

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