Wednesday, 29 January 2020

Study finds many youth living with undiagnosed chronic fatigue syndrome

Researchers from DePaul University and Lurie Children’s Hospital screen 10K children, teens in NIH-funded study

Most youth living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have not been diagnosed, according to a new prevalence study from researchers at DePaul University and Ann & Robert H. Lurie Children’s Hospital of Chicago, published by the journal Child & Youth Care Forum. Leonard A. Jason, a professor of psychology at DePaul University, led the seven-year study to screen more than 10,000 children and teenagers in the Chicago area.

The researchers found that less than 5% of youth in the study who tested positive for ME/CFS had been previously diagnosed with the illness. Of the children assessed, African American and Latinx youth were twice as likely to be living with undiagnosed ME/CFS. The study was funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, one of the National Institutes of Health. Jason has been studying ME/CFS for more than 30 years and says the illness can affect all aspects of a child’s life, from physical functioning to attending school and participating in extracurricular activities.

“When you’re talking about a condition that’s as debilitating as this one, the health care response has not been good,” said Jason. “There aren’t that many physicians who are trained and skilled at diagnosing and treating this illness, and our health care system has not done a great job at trying to help people who are affected,” said Jason, director of DePaul’s Center for Community Research.

Working with Jason as co-principal investigator is Dr. Ben Z. Katz, a pediatric infectious disease specialist at the Ann & Robert H. Lurie Children’s Hospital of Chicago. Katz is also a professor of pediatrics at Northwestern University Feinberg School of Medicine. He has collaborated with Jason and his group since the late 1990s.

“Our finding that most youth with ME/CFS have not been previously diagnosed is comparable to findings in adults,” said Katz. “We definitely need better ways to identify people with this illness and to develop effective interventions for them. In particular, we need to reach African American and Hispanic youth, since in our study these groups had higher prevalence of ME/CFS. ”

The prevalence of pediatric ME/CFS has been in dispute, so Jason and Katz set out to include a diverse sample of ethnic, socio-economic and demographic backgrounds. Other ME/CFS prevalence studies have drawn from tertiary care centers, which can exclude those without access to health care, explained Jason. The researchers tailored their approach by including a thorough medical and psychiatric examination, offering access to high-quality screening for those at-risk of having the illness.

Researchers screened a random sample of 10,119 youth ages 5-17 from 5,622 households. The first stage was a phone interview with parents and caretakers about the health and behavior of their children and teens. Missing school because of fatigue was one of the common symptoms among youth who showed a higher risk of having ME/CFS, and was a red flag for parents, said Jason.

Of those who screened positive over the phone, 165 youth went on to medical and psychiatric examinations. Following evaluations, a team of physicians made final diagnoses. Youth were given a diagnosis of ME/CFS if they met criteria for case definitions. Of the 42 youth diagnosed with ME/CFS, only 2 (4.8%) had been previously diagnosed with the illness.

Prevalence of pediatric ME/CFS was 0.75%, which is a bit less than 1%, with a higher prevalence among African American and Latinx youth compared to their Caucasian peers. “Clearly people of color do get this illness, and there are some myths that you have to be white middle class to have ME/CFS,” said Jason.

A lack of access to health care, and therefore less opportunity for an earlier diagnosis, could explain this racial disparity, according to Jason. “There are barriers to researchers gaining access to underserved populations. They may not trust institutions as easily, and they may not also have time to bring their children into appointments,” said Jason.

And, there is still stigma and misunderstanding about ME/CFS among health care providers. “They may not believe this is a condition, or might attribute it to fatigue,” said Jason.

The findings point to the need for better ways to identify and diagnose youth with this illness, said Jason, who has secured more than $46 million in research grant support during his 45-year professional career at DePaul. Co-authors of the study are DePaul University graduate students Madison Sunnquist, Chelsea Torres, Joseph Cotler and Shaun Bhatia.

“We’re trying to help people who have this illness have information that could be used to argue for more resources for diagnosis and treatment,” said Jason.

The study, “The Prevalence of Pediatric Myalgic Encephalomyelitis / Chronic Fatigue Syndrome in a Community-Based Sample,” was supported under award number R01 HD072208.

Wednesday, 22 January 2020

Latest work from Ron Davis

From the ME Research UK website –

Last month, in his excellent blog, ME/CFS Research Review, Simon McGrath summarised some of the fascinating developments in the work of Stanford researcher, Dr Ron Davis.

Dr Davis’s central hypothesis is that there is some factor in the blood plasma of ME/CFS patients that is driving their illness. Plasma is the liquid component of blood in which the blood cells and platelets are carried, but it carries many other components – such as antibodies and other proteins – which are important for health.

In previous experiments, the electrical impedance of a sample of white cells in plasma from ME/CFS patients increased when stimulated with salt, while there were no electrical changes in samples from healthy volunteers.

However, these changes in impedance disappeared when the ME/CFS cells were placed in plasma from healthy people, suggesting that something in the ME/CFS plasma is making the cells act abnormally.

The dramatic difference between ME/CFS and healthy plasma suggests this test might be useful as a biomarker, but the results may also lead to discoveries about the pathology of the illness.

Dr Davis has also seen that deformability of red blood cells (their ability to squeeze through the smallest capillaries) is reduced in samples from ME/CFS patients, but only when the cells are tested in patients’ own plasma (as opposed to the stabilising fluid commonly used in these kinds of experiments). This also implicates some factor in the plasma.

More recently, he has found that the rise in impedance in ME/CFS white cells seen in the salt tests can be prevented by adding the mitochondrial antioxidant SS-31 or the multiple sclerosis drug copaxone.

Furthermore, ongoing experiments in Dr Davis’s laboratory are looking at whether the offending factor in the plasma of ME/CFS patients is some form of microorganism such as a virus, bacteria or parasite.

Tuesday, 14 January 2020

From the 25% ME Group – Diagnostic Tests 4 Myalgic Encephalomyelitis

This is a summary of a highly detailed, sourced text describing measurable organic abnormalities that researchers and specialists have identified in testing of Myalgic Encephalomyelitis patients.


For various reasons, many of the articles on Myalgic Encephalomyelitis in the mainstream media (and even some of the medical texts on the illness) unequivocally proclaim not only that there are no tests which can be utilized to help confirm an ME diagnosis, but that despite extensive testing no objective or quantifiable abnormalities have ever been found in any patients with ME whatsoever. Despite their popularity, these are simply absurd claims. The reality is that objective evidence of quantifiable organic abnormalities in Myalgic Encephalomyelitis patients has existed since the 1950’s.

Not only are there a series of tests which readily allow an ME diagnosis to be confirmed, but more than 1,000 medical studies have shown a variety of measurable and in some cases extremely severe abnormalities in many different bodily systems of ME patients.

Abnormalities are also visible on physical exam. Tests will only all be normal in ME patients – as with all illnesses – if the completely wrong tests are done, or if those tested do not in fact have ME. Contrary to much of the propaganda surrounding the illness, it is also not “fatigue” or “tiredness” that is the one essential characteristic of ME, but central nervous system (CNS) dysfunction. As ME expert Dr. Byron Hyde, explains: “The one essential characteristic of ME is acquired CNS dysfunction, [not] chronic fatigue. A patient with ME is a patient whose primary disease is CNS change, and this is measurable. We have excellent tools for measuring these physiological and neuropsychological CNS changes: SPECT, xenon SPECT, PET, and neuropsychological testing.” Thus it is these tests which are most critical in the diagnosis of ME, although various other types of tests are also useful. Tests That Can Aid Diagnosis Some of the series of tests which can (in combination) help to confirm a suspected ME diagnosis include:

SPECT and xenon SPECT scans of the brain

SPECT scans have demonstrated decreased cerebral blood flow most frequently in the frontal, parietal, temporal, occipital, and brain stem areas of the brain. Eighty percent of ME-ICC patients will have abnormal SPECT scans. These abnormalities have also correlate with clinical status. Dr. Hyde adds that “I do not describe a patient as having ME unless there is an abnormal SPECT. If the SPECT is normal, I repeat it along with xenon SPECT. If the brain scans remain normal, I conclude it is unlikely to be ME.”

MRI scans of the brain

Punctate, subcortical areas of high signal intensity consistent with edema or demyelination were identified by MRI in 78 percent of ME patients (similar to those seen in MS). Research has shown that 50 percent to 80 percent of ME patients will have abnormal MRI scans. ME patients with abnormalities on MRI have been reported as being more severely impaired than those without such abnormalities.

PET scans of the brain

PET scans have shown decreased metabolism of glucose in the right mediofrontal cortex and generalized hypoperfusion of the brain with a particular pattern of decreased neuronal metabolism in the brain stem.

Neuropsychological testing

Of the CNS dysfunctions that make up ME, cognitive dysfunction is easily one of the most disabling characteristics of the illness. Neuropsychological testing can be used to identify cognitive dysfunction and/or to confirm a ME diagnosis. It should focus on the abnormalities known to differentiate ME from other causes of organic brain dysfunctions.

EEG brain maps and QEEG brain maps

Ninety-five percent of ME patients have been found to have abnormal cognitive-evoked EEG brain maps. But Dr. Hyde argues that QEEG brain maps are far more accurate, and that they “have been able to demonstrate not only lack of normal activity in ME patients but migration of the normal activity centers from injured areas to different parts of the brain.”

Neurological examination and the Romberg or tandem Romberg test

Most ME patients have abnormal neurological examination. The Romberg test is a useful test of brain stem function. It involves standing with eyes open and then with eyes closed with feet together or one behind the other for a minute or more. A patient tests positive for “Romberg’s sign,” or abnormal, if he or she can stand with the eyes open but falls when the eyes are closed. Professor Malcolm Hooper ME specialist at the University of Sunderland, England, explains that “In his 1995 Australian Workshop, Dr. Paul Cheney said that more than 90 percent of ME patients have an abnormal Romberg, versus 0 percent of controls.”

Tests of the immune system

The immune system abnormalities in ME patients mimic the immune pattern seen in viral infections. Specific findings include (but are not limited to):

1. Increased numbers of activated cytotoxic T cells (most patients have evidence of Tcell activation)
2. Low natural killer cell numbers/percentage and function (cytotoxicity)
3. Elevated immune complexes
4. Atypical lymphocyte count
5. Significantly reduced CD8 suppressor cell population and increased activation marker (CD38, HLA-DR) on CD8 cells
6. Abnormal CD4/CD8 ratio
7. Elevations of circulating cytokines
8. Immunoglobulin deficiencies (most often IgG 1 and IgG 3).

RNase L

A more specific immune system abnormality has been discovered in MEICC of increased activity and dysfunction of the 2-5A RNase L antiviral pathway in lymphocytes. The dysregulation of the RNase L pathway strongly supports the hypothesis that viral infection plays a role in the pathogenesis of the illness. Between 80.0 percent and 94.7 percent of ME patients have evidence of an up-regulated 2-5A antiviral pathway. The degree of elevation of 37 kDa RNase L has also been shown to correlate with symptom severity. This test is as yet not widely available but will be one of the most useful tests in helping to diagnose ME in the future.

Erythrocyte sedimentation rate (ESR)

This is a common blood test used to detect and monitor inflammation based on the rate at which red blood cells settle in a test tube.] An unusually low ESR of < 5mm/hr is common in ME <5mm 5mm="" common="" hr="" in="" is="" me.="" me="" span="">

Insulin levels and glucose tolerance tests

Derangement of insulin response is a frequent finding in ME patients. Glucose tolerance curves are often abnormal.

24-Hour Holter monitor

A 24-hour Holter monitor (a type of heart monitor) may show repetitively oscillating T-wave inversions, and/or a flat T-wave may be found. Holter monitors may also show heart rates as high as (or higher than) 150 beats per minute as an immediate or delayed response to the patient maintaining an upright posture, or at rest. Heart rates as low as 40 beats per minute may also be observed (during sleep).

Tilt table examination

Orthostatic intolerance is very common in ME patients, and may manifest as one of, or a combination of, the following: neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), or delayed postural hypotension.

Exercise testing and chemical stress tests

Cardiopulmonary exercise testing (CPX) is widely used for the diagnosis (and functional assessment) of various cardiac and metabolic disorders and can also be used in the diagnostic evaluation of ME patients. Heart rate and blood pressure responses during the exercise test may reveal abnormalities specific to ME, including: lower cardiovascular and ventilatory values at peak exercise (patients only being able to attain half the expected maximal workload and oxygen uptake compared to sedentary controls), elevated resting heart rates, and an inability to reach maximum age-predicted heart rates. Some ME patients can be tested via nuclear medicine (no treadmill) in Hospital.

As exercise tests are not appropriate for many ME sufferers, Dr. Byron Hyde, writes: “Patients with ME frequently cannot do exercise tests, so chemical testing as an option.”

Physical exam

There are also a variety of abnormalities visible on physical exam in ME patients. These abnormalities are not usual in healthy patients, but they are also found in people with other organic illnesses (so they are not specific to ME). The post-exertional paralytic muscle weakness unique to ME should also be tested for; a diagnosis of ME should never be made without this characteristic being present.

ME shares no characteristics of various “fatiguing conditions” with a variety of different etiologies made up of vague & mild “everyday” type symptoms and have no physical signs or no tests which can’t show abnormalities to aid diagnosis.

Myalgic Encephalomyelitis is a distinct organic neurological disorder (which can occur in both epidemic and sporadic forms) that has been recognized as such by the World Health Organization (WHO) in their International Classification of Diseases since 1969 with the code G93.3. It bears no relationship to any unrelated, vague, and hard-to-diagnose “fatiguing illnesses.”

“Unlike Somatization Disorder, Medically Unexplained Symptoms (MUS), Functional Neurological Disorder (FND), and Munchausen Syndrome, ME is not ‘medically unexplained.’ ME is a disease which, like lupus, has no single marker. ME is a multisystem disease with many organ and bodily systems affected, producing a myriad of symptoms, and many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research. These are well-documented, scientifically sound explanations for why patients are often bedridden and unable to maintain an upright posture.”


1. See the full-length, fully-sourced article, “Testing for ME,” at Jodi Bassett’s Australia-based Website, A Hummingbirds’ Guide to ME, at provides more information on the tests listed here as well as on many other aspects of diagnosis, plus a list of references.

2. Dr. Byron Hyde, MD, is an internationally recognized ME specialist, and chairman of the Nightingale Research Foundation for the study and treatment of ME in Ontario, Canada.

3. Myalgic Encephalomyelitis: International Consensus Criteria

Monday, 6 January 2020

From Let’s Do It For ME: New Total £960,000!

Invest in ME Research announced in their Christmas and New Year Funding Appeal that £960,000 has been raised and pledged to support the charity’s Centre of Excellence for Myalgic Encephalomyelitis projects.

The Let’s Do It for ME campaign is run by severely ill patients supporting the charity’s Centre of Excellence programme of biomedical research and medical education projects. Our original crowdfunding goal of £100,000 enabled this work to get underway in 2013 (patient samples for the lab work obtained since 2014) and we would love to reach £1,000,000!

So to start off the new year, we have created a grid with 40 vacant slots with a funding target of £1,000 each and invite you to contact us if you’d like to aim to raise £1,000 whether as an individual or group, private or business. Read more on the page for Our 40 x £1k Fundraisers Challenge.

Many thanks to everyone helping Invest in ME Research to achieve their goals relating to maintaining a programme of high quality biomedical reseach with international collaboration focused on establishing diagnostic tests and medical treatments for this disease.

The charity wrote in December,

To our supporters we owe great thanks – you helped create something that was thought unachievable. A sustainable Centre of Excellence for ME is now harnessing the benefits of a strategy of collaborative international biomedical research in modern facilities with world-class researchers.”

With very best wishes to you for 2020 and the new decade ahead and grateful thanks for supporting Invest in ME Research.

In case you missed it, your input is needed to inform the agenda for an upcoming public engagement meeting at Quadram Institute.

Wednesday, 1 January 2020

Happy New Year 2020

A very Happy New Year to readers of my blog, your families and friends.

A couple of weeks ago I was given a Christmas card containing a separate little tract with the following poem, which I trust may be an encouragement to you as we start another new year –

Throughout the New Year, and each step of the way,
May Christ be your portion, your joy and your stay.
With God's precious precepts your daily delight
To lead and encourage in paths that are right.

"The Lord is my Shepherd," how precious the word!
He'll lead in green pastures, His promise is heard.
"Beside the still waters," what comfort and rest!
What peace there is found upon Jesus' breast.

His "goodness and mercy," each day may you prove,
His comforting presence, His infinite love!
With richest compassions, each morning anew,
May multiplied mercies be showered on you!

"My cup runneth over," His grace so abounds,
That fullest enjoyment in Jesus is found.
"The Lord is my portion," this may your soul say,
And you will be happy each step of the way.

- Lois Beckwith (1896-1958)