News: 2024 Apr 5
ME Global Chronicle published & other news
Some recent news from around the world that caught my eye
MEGC quarterly publication
Powerful MRI tested in France
Hillary Johnson writes about history of outbreaks
Conferences
Updated Table of Contents for View from the Trenches of ME
MEGC quarterly publication
ME Global Chronicle is celebrating their 10th anniversary of bringing news from around the world to the myalgic encephalomyelitis community. (I am one of the editors - helping with the publication as I am able.)
The latest publication, ME Global Chronicle (MEGC) #48, includes news from a wide variety of sources. The message from the editors for this issue states:
“The ME Global Chronicle doesn’t present itself as the end-all be-all of connecting ME communities worldwide. But we are grateful for the fact that we’ve been able to play our part, thanks to you, loyal readers and contributors.
We hope to be able to see the day together when the consensus and guidelines for treatment of ME patients in accordance with the most accurate information (currently the International Consensus Criteria for ME, 2011) becomes the standard.
Understanding about the reality of ME and best treatment options is our birthright, just like it is of any other individual suffering from any other severe, debilitating, chronic illness, which sometimes leads to fatal results.”
Table of contents includes the following:
news from:
19 countries
5 charities
4 authorities
Powerful MRI tested in France
Some news outside of the world of ME caught my eye. An article titled, World's most powerful MRI scans first images of human brain, describes a new MRI machine in France that is more powerful than anything else in the world.
The article states:
“The magnetic field created by the scanner is a whopping 11.7 teslas, a unit of measurement named after inventor Nikola Tesla.
This power allows the machine to scan images with 10 times more precision than the MRIs commonly used in hospitals, whose power does not normally exceed three teslas.”
We have seen brain changes in people with ME when scanned using a SPECT scan, but an MRI using the lowest power (1.5T) often shows very little in the way of abnormalities.
I wrote about my experience of getting a SPECT scan which showed I have areas in my brain that do not get normal blood flow. That article can be found HERE.
The use of SPECT scans to help diagnose ME is discussed on page 4 of the ME IC Primer. It explains that:
“extensive areas of hypoperfusion are characteristic of ME”
Hypoperfusion is a reduced amount of blood flow.
Because most neurologists rely on the commonly used MRIs and do not use SPECT scans to evaluate people with ME, they don’t see the abnormalities that exist. This “lack of evidence” leads to little interest from neurologists to help us manage the cognitive issues that severely impact our lives.
I find the news of having much more powerful MRIs as a step toward someday having the right tools to look for the changes in the brains of people with ME.
At this time, it may be helpful to ask for a 3T MRI instead of a weaker model to look for abnormalities.
Polybio Research Foundation is using a 7T MRI in their research. See info about that HERE.
Hillary Johnson writes about history of outbreaks
In a recent article titled, Mission Drift, Hillary Johnson shines a light on the history that continues to affect us today. From the article:
“This column is the first part of a story about two US government investigations. These investigations are separated by time—thirty years—and scientific bias, which short-circuited and ultimately rendered the second investigation meaningless.”
“The Tahoe investigation was doomed from the start. Yet its legacy lives on, forty years later.”
I recommend following The World of Osler's Web on Substack.
Conferences
Conferência EMSFCCovidLonga
On April 3 and 4, the Conferência EMSFCCovidLonga was livestreamed on YouTube. This conference took place in Portugal with several presentations done via video by presenters not in attendance. It included a number of researchers who are well known in this field.
The list of presenters can be found HERE.
From the website about this conference. (Translated from website using Google Translate)
“This conference aims to increase visibility, clarify misconceptions, promote understanding and stimulate discussion among health professionals, researchers, policy makers, patients and community representatives about clinical manifestations, their management, therapeutic options and challenges. for health linked to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and COVID Longa.”
I watched a couple of the presentations. One of those was by Maureen Hanson, from The Cornell Center for Enervating NeuroImmune Diseases, who continues to provide evidence for the hypothesis that immune changes are driven by persistence of infectious pathogens.
Other speakers talked about the importance of stratification of patients to be able to improve the ability to reproduce studies. I couldn’t agree more. I write about the importance of stratification HERE.
Note: Not all of the presentations were in English
Unite to Fight conference
The next conference I am interested in will take place on May 15 & 16 and will be hosted by a new group called “Unite to Fight”. It is a free online conference. (Donations are accepted).
It is promoted as: “The biggest community-driven ME/CFS and Long COVID conference ever”
Their list of speakers include some people I am not familiar with but the following speakers caught my interest:
David Tuller
Akiko Iwasaki
Resia Pretorius
Carmen Scheibenbogen
Bhupesh Prusty
Amy Proal
David Putrino
See more information and register HERE.
Updated Table of Contents for View from the Trenches of ME
I have updated the View from the Trenches of Myalgic Encephalomyelitis Substack’s Table of Contents - MASTER LIST. https://drive.google.com/file/d/1dAItKrMuDqOGXK7Kk0YXOzEGuMqGqmY1/view
This provides a place to more easily find information I have written about since starting this endeavor.
Thank you for subscribing to View from the Trenches of ME. If you have questions or suggestions for future articles, please let me know. I love hearing from my readers.
Colleen
Information provided here or in comments is not to be considered medical advice
Thank you for pulling together this detailed information! I'll definitely checkout the conference livestreams.