Quantitative Electroencephalographic Assessment of ME/CFS. Support for a novel diagnostic protocol, 2019, Pellegrini. Student thesis.

Links to the thesis and other papers are in a post further down the thread

Merged thread
Andrew Pellegrini replicates Byron Hyde's findings (apparently)

"Apparently", because I haven't got the energy to read the article properly rather than just skimming.

 

I know QEEG testing has been around for a while. But I don't know how well accepted it is by doctors.

Is QEEG testing useful in a clinical setting for any other illness? I'm not talking about ME, but for any other illness -- brain injury, depression, whatever.

Or is QEEG still a mostly experimental test, used in research only?

I tried to use google scholar to get a sense of how QEEG testing has been used but I quickly got in over my head.

 

QEEG findings have been reported on before, I regard it as an essential test that almost never gets done. The big reasons are its non-invasive, and can tell you a lot about cognitive function in one single test.

QEEG and similar methods are routinely used in stroke and brain damage patients.

 

There seem to be some psychiatrists who are promoting the use of QEEG as a way of accurately distinguishing one psychiatric condition from another.

This 2018 article, however, says that it's important for psychiatry to distinguish QEEG's promise from the "hype."


QEEG Recordings Not Recommended for Determining Depression-Treatment Response
https://psychnews.psychiatryonline.org/doi/10.1176/appi.pn.2018.pp11a2


Personally, I would be concerned over the issue that patients, knowing that there is a computer involved ("ooh! ahh!"), will assume that all subjectivity has been removed from the diagnosis.

 

Beware bugs, ummm, sorry, special program features. The real issue is still interpretation. No psychiatric diagnosis is stable, as in proven to be a discreet clinical entity with reliable diagnosis, at least so far. What can be done with QEEG from my limited reading is determine likely cognitive issues. So when a patient complains of, for example, problems with math, then this test will tell the doctor the patient is probably not misinterpreting things. QEEG is so far not useful for treatment that I know of, but its valuable for helping doctors to understand.

 

Announcement From Millions Missing Canada
Research Results Released: qEEG Assessments for ME Volunteers From Laurentian University

During the summer of 2018, researchers from Laurentian University Neuroscience Department led by Andrew Pellegrini, visited 45 ME patients in their homes in Ontario. The purpose was to collect Quantitative Electroencephalographic (qEEG) data to investigate changes in brain functioning associated with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).

The reports for all 45 of the volunteers in the study have been completed and will be sent out over the next few days. Every member of the study showed statistically significant brain anomalies compared to healthy controls on Quantitative Electroencephalography (qEEG) related to ME/CFS.

The reports are written so as to be primarily addressed to the physicians of each volunteer in hopes that the qEEG findings can be followed up with further testing as recommended for the benefit of the individual patients, and to help increase general medical understanding of ME based on hard neurological evidence.

Most importantly, Dr. Sonia Neubauer MD, who's lab in Chile generated the modern SPECT maps used by Dr. Hyde has graciously agreed to have her contact information included in the reports. She is willing and available to do the same work she did for Dr. Hyde and his patients for each member of the study. While qEEG has proven useful, SPECT still represents the gold standard for showing brain dysfunction in ME.

While Andrew had hoped to secure some method of funding as there is a fee associated with this analysis, unfortunately the cost will have to be borne by the individuals. This is also a medical test that will require a cooperative physician to make the referral and work with Dr. Neubauer. Given that many of the volunteers are clustered close together in Toronto and Ottawa perhaps the same physicians may see enough individuals with reports from the study to be open to this approach which is both somewhat unconventional and at the same time scientifically sound.

Therefore, volunteers choosing to share their reports with their physicians should also include a copy of Andrew’s thesis document showing validation of Dr. Hyde's findings, as well as the technical details of how the study was conducted. A PDF copy of Dr. Hyde's 1992 text book (which is now freely available on his website) will also be attached as a reference material for physicians. While nearly 30 years old, the SPECT images shown in colour at the front clearly show that PEM is characterized by a dramatic worsening of cerebral blood perfusion above and beyond the pathological baseline. Modern researchers are still working to define PEM (Post Exertional Malaise) and Andrew believes that Dr. Hyde's findings are of essential importance even though they have not, as yet, been widely recognized.

Andrew writes in his email to us, “This project has been one of the most interesting and rewarding experiences of my life and I am proud to be able to offer this small service to the ME/CFS community.”

With our deepest thanks to Andrew for his dedication to this project and his commitment to the community. Congratulations Andrew on completing this milestone in your research. We wish you good health and much success in the future.

Questions concerning your individual reports can be directed to Andrew. For those who want to know the backstory, the complete past history can be seen at:
https://bit.ly/3hFD1G9

Andrew’s thesis, ‘Quantitative Electroencephalographic Assessment of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Support for a Novel Diagnostic Protocol’, by Andrew Pellegrini can be found at:
http://bit.ly/2kn1LM5

The textbook, ‘The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome’ by Bryon Hyde, Jay Goldstein and Paul Levine is free to download at the following link.
https://www.nightingale.ca/publications

Dr. Hyde’s new book ‘Understanding Myalgic Encephalomyelitis’ and other publications can be ordered at this link.
https://www.nightingale.ca/publications

A preview of Dr. Hyde’s new book ‘Understanding Myalgic Encephalomyelitis’ can be viewed or downloaded from the Nightingale Research Foundation at:
https://www.nightingale.ca/

The ‘Definition of Myalgic Encephalomyelitis is available in four languages, English, French, Norwegian and Danish. It can be viewed or downloaded here:
https://www.nightingale.ca/understanding-m-e

Description of Attached Images:

Figure 9 The Left Temporal Lobe: The aggregate of 45 ME brains is shown on the left, compared with NRF SPECT maps of individuals on the right. The same left temporal hypoperfusion pattern shown here has been demonstrated by Dr. Mena and colleagues in 13/13 children with ME/CFS (Goldberg et al., 2011).

Figure 12 The Right Temporal Lobe: Regions of hyper and hypo-perfusion in the frontal, temporal and occipital cortices in this individual’s SPECT approximately cover the inferior half of the right hemisphere. Likewise, the aggregate of 45 brains, shown on the left, includes approximately the same area.

 

Note that Andrew Pellegrini's research focuses on "classic" ME, as defined by Byron Hyde - eg caused by enterovirus and requires "evidence of anterior temporal lobe and posterior cingulate hypoperfusion injury" on SPECT scans

I found this interesting:

My initial symptoms were difficulty swallowing and Acute Flacid Myelitis, but I don't believe this is common. But my case was bilateral, not unilateral as is common with poliomyelitis and the recent mystery AFM cases that are probably caused by Enterovirus(es), despite the CDCs unwillingness to admit this.

Also:

 

Has anybody been able to ignore the rather irritating certainty about what ME is according to Hyde and looked at the actual qEEG study? The way it's written it sounds a little like fitting the evidence to prior expectation but I don't understand the technical details so could easily be missing something. Is there anything of interest in there?

EEG and qEEG have popped up in a few threads (there may be more, have only done a cursory search) but none have generated much discussion.

• https://www.s4me.info/threads/meact...k-in-business-assessing-people-with-me.12708/
• https://www.s4me.info/threads/corti...nic-fatigue-syndrome-2018-montoya-et-al.4372/
• https://www.s4me.info/threads/a-sys...es-maksoud-marshall-gradisnik-apr-2020.14933/

Google also found this paper:

Wu T, Qi X, Su Y, Teng J, Xu X. Electroencephalogram characteristics in patients with chronic fatigue syndrome. Neuropsychiatr Dis Treat. 2016;12:241-249. Published 2016 Jan 28. doi:10.2147/NDT.S92911
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4734796/

Finally, EEG and qEEG are mentioned a few times here:

https://solvecfs.org/wp-content/uploads/2019/12/Neurologist-info-for-ME.pdf

 

In 2011, Anthony Komaroff et. al published a paper in which they used "eeg spectral coherence" data to accurately distinguish between ME/CFS patients, heathy controls and patients suffering from clinical depression [aka "major depression"].

I'm not sure if this would be called "qeeg" today.

 

Who wrote this?

 

No idea. Google just turned it up as is.

Going by the address it was posted by Solve ME/CFS in 2019 - so not that long ago - but searching their current website I can't find it.

There are a few links in the handout to www.meadvocacy.org (the ones pushing ICC) but I can't find it on their site either.

A mystery.

 

The question is: why is this not being used as a diagnostic tool for ME today? Lack of funding for proper development?

I believe that glial cells are involved in ME. Astrocytes working abnormally could account for the cererbral vascular hypoperfusion.

 

A person who might know something about qEEG would be @alex3619

 

So far as I can see the qEEG research suffers from the same issue as the rest of our research ... lack of funding and political will.

Spectral coherence is not qEEG from what I currently understand, but qEEG seems to be a composite technique that might be modified to include a range of measures with more research. Variants of qEEG are also commonly used in medicine ... but the use of it is siloed to some conditions, from stroke monitoring to obstructive sleep apnoea.

I have been thinking about the history of ME, which was until the last few decades closely associated with the history of polio. I have been asking myself if we associate it with polio because polio got attention, it was closely watched by doctors and media, just as we see with Covid-19 now. Non polio ME outbreaks might have simply been ignored.

In other words, less common issues that are hard to casually observe, the so-called "invisible" diseases, are simply ignored by society. Then we have a pandemic. AIDS got its funding and advances because of activism and public awareness even without activism. If the social and economic costs of Covid-19 are much greater than people are aware of currently then things will change. More awareness, plus more people taking advantage of that awareness, could make a big difference.

qEEG is not typically used for ME, just as CPET is not typically used, or whole genome snp analysis, and a range of other things. If these things had enough evidence of clinical efficacy that most doctors at least occasionally read about then the story might change. This is as much about awareness and marketing as it is about science and funding.

Right now we have no generally effective treatments for ME. We have things that work to some extent in some people but are not clinically shown to work for everyone. I suspect that if effective treatments existed then a range of technologies, including qEEG, might become more important in monitoring patient progress. Without such treatments the only benefit is insurance and pension related benefits, and they are often treated as more about saving money more than helping people.

In other words, oh look, qEEG can show brain changes. Who cares? Not to be cynical ...

 

I had a qEEG done many years ago by a neurophysiologist. It was one of the best things I did. Besides helping me with ME/CFS, it was proof to my family, who was threatening to send me away to an institution for "therapy," that there was indeed something physically wrong with me.

This qEEG showed that my brain was 90% impaired with slow wave activity. With eyes open, my brain was functioning as though I was asleep. With eyes closed, my brain was functioning as though I was awake. The neurophysiologist called it a metabolic encephalopathy. She said she sees this pattern of abnormal brain functioning in all of her CFS, what we prefer to call ME, patients. Although intractable, she was able to improve my brain functioning through neurobiofeedback so that I went from practically bedbound to having what I call my "little regained life." The problem of not being able to comprehend anything I was trying to read improved. Sleep problems improved. I could once again follow the plot of a movie. No, it did not cure me, but it certainly made my life better. I am very grateful for any improvements, however small they may be. I am still housebound, but within those parameters I can once again enjoy a "little life" paced out as we all must do.

This doctor tried to get manuscripts published of her findings. No one was interested. I sincerely hope others will take up research in this area. I really think it would be of benefit to us.

 

You appear to have ME on top of... ME.

https://www.aapmr.org/about-physiat...s-system-disorders/metabolic-encephalopathies

 

Or is this metabolic encephalopathy a part of the whole ME/CFS complex that results in the brain fog and sleep disturbances we experience? Or does this metabolic encephalopathy develop as a result of having ME/CFS? It surely would be helpful to have some answers.

 

I had qEEG done after road accident and head injury. The results were not taken seriously by any of the UK NHS doctors I saw. It would seem to have a long way to go towards acceptance here.

 

Many years ago a study was done which showed that if the qeeq testing was done upright instead of lying down the results were much stronger at showing an association with ME.

I don't mind about ME being associated with other viruses but the way the connection with polio and other enteroviruses has been almost forgotten infuriates me. The US doctors were always obsessed with EBV. At the time CFS was invented they ignored all prior expertise of the UK researchers who had spent years examining patients which is why the connection with exertion was lost for so many years.

The epidemics were ME and if they had not been neglected covid would not be taking doctors by surprise now. It astounds me the way those symptoms match my experience.

We have also lost something important. If enteroviruses and EBV can lead to the same disease then something in the action of both must overlap and that would be a good place to do research.

 

I was curious so I enquired with Solve. They say