Resources for Myalgic Encephalomyelitis History
ME Global Chronicle and CFIDS Chronicles
I want readers to know there is a wealth of information available online about the history of myalgic encephalomyelitis (ME). Much of this information has been collected and posted by advocates who volunteer their time to make sure the history of ME isn’t lost.
ME Global Chronicle
First I want to share about the ME Global Chronicle (MEGC). The latest issue marks their 50th issue. The first issue from January 2014 explained the creation of the MEGC.
“Information about recent or upcoming events can be found everywhere on the internet, but is scattered about. We think it’s a good idea to combine this info and centralise it, thus preserving people's searching-energy.”
The format and some of those involved has changed over the years. My original connection to the MEGC was to submit articles. Over time I began to help out when asked by Rob Wijbenga, who has been part of the chronicle since its inception. I continue to help editors Rob and Eddy Keuninckx as I am able.
Originally the chronicle was compiled into a single document and sent out to subscribers. Today there is a website that gathers articles in one place with an index published periodically to make it easy to see what has been added each quarter. The website also has a search tool.
Links to chronicles number 1 - 38 can be found HERE. The subsequent indexes can be found HERE.
The home page of the MEGC website explains:
“This magazine is by and for everyone in the world who suffers from Myalgic Encephalomyelitis.
The most accurate description of the disease is in the International Consensus Criteria for ME (2011). In it, the name ME is also separated from CFS, which was linked to it by the CDC in 1988. Which had major and serious implications for the ME community.
Above all in all our actions and articles we think of those, who because of ME have to wear their lives in the dark, and those who for whatever reason have been taken away from us by death.
They are forever – as long as our lives last – in our hearts.”
Each issue includes lived experience stories, news about research, what is happening in various countries and more.
The 50th issue includes a note about upcoming changes.
“Due to lack of time and energy, we will no longer be able to search the Internet ourselves for suitable articles. As a reader, you can of course suggest them: if so, please send the link – or preferably the text in a word document – to meglobalchronicle@gmail.com. We will always let you know the submission was received.”
We hope community members will help MEGC continue to chronicle important news about ME.
This is an excellent resource for anyone who wants to delve into how things have changed (or not) for people with ME.
The CFIDS Chronicle
The other resource I want to make sure people know about is The CFIDS Chronicle.
CFIDS stands for Chronic Fatigue Immune Dysfunction Syndrome. I am sure that removing “immune dysfunction” from the name led to some of the misunderstandings about the reality of ME. In the early 1990s my records included the CFIDS label, but that was soon replaced by CFS as the 1994 Fukuda definition watered down the criteria.
The label CFS has led to a great deal of harm. I wrote about that HERE.
The CFIDS Association (now known as Solve ME/CFS Initiative) began in the late 1980s. I subscribed to their CFIDS Chronicle starting in the early 1990s. Despite having done several moves over the years, I still have a number of these publications.
The information in these chronicles helped save my life (and some of my sanity). It offered vital information before the internet provided a way to talk to other patients and follow current research.
I am VERY grateful to Matt Lazell-Fairman (@mfairma.bsky.social) who posted on Bluesky that he had digitized a number of the CFIDS Chronicles and made them available to anyone interested. His Sept 23 post stated:
“For those interested in #MECFS history, I’ve digitized 32 ‘90s era issues of CFIDS Chronicle, a newsletter published by @PlzSolveME. For ease of access, I’ve also compiled them into one highly compressed PDF so you can search the lot. #CFIDSChronicle”
https://drive.google.com/drive/folders/12nqHs37qT2MsOfQ727mTYROvD7Rn91wf
The link goes to a Google doc file that includes individual issues as well as a Compiled Chronicles file that includes all of the chronicles he has scanned in one pdf. These are searchable PDFs which greatly improves the ability to find information from these historical issues. (Some of the files are fairly large.)
I cannot overstate how valuable this resource is to understand how far we have come since the 1990s. Maybe I should say how far we have NOT come since the early 1990s.
Then and Now
The 1994 Spring CFIDS Chronicle includes an article, Dancing with the Serpent, by Tara Allan discussing the challenges of not being understood. (Found on page 41) She states:
“It's hard to believe that people are still so uninformed about the severity of this illness, but it's true.”
30 years later In the most recent MEGC there are articles that discuss the challenges of living with ME because society does not understand this disease. Naomi Whittingham in her article, Why Maeve’s Death Must Bring Change, discusses the lack of understanding.
“Others see it as a moderate, fatiguing illness and cannot comprehend the presence of such severe symptoms.”
There are some repeating themes in the biological understanding of ME. Impaired blood flow to the brain has been a topic of discussion for decades.
In the Spring/Summer 1990 issue of the CFIDS Chronicle an article titled Piercing The Smoke Screen View of CFIDS shared information from a conference that included issues with blood flow to the brain.
“Seventy-one percent of (CFIDS) patients have hypoperfusion -- abnormally low blood flow -- in the temporal lobes of their brain…”
In the 50th edition of the MEGC, the article entitled, The cardiac output – cerebral blood flow relationship is abnormal in most ME/CFS patients with a normal heart rate and blood pressure response during a tilt test discusses the same issue.
“Orthostatic intolerance is highly prevalent in patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and is caused by an abnormal reduction in cerebral blood flow (CBF).”
IVIG is one of the possible treatments we have been hearing about for over 30 years. From the Spring/Summer 1990 issue of the CFIDS Chronicle (pg 20):
“Dr. Lloyd had encouraging results in a double blind, placebo controlled trial with high doses of intravenous gammaglobulin in 49 CFIDS patients.”
I don’t know what became of this study. (If anyone has information on that, please let me know or leave a comment.)
In the latest MEGC an article titled Successful Subcutaneous Immunoglobulin Therapy in a Case Series of Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome states:
“In this limited-sized case series, we found pronounced beneficial effects of low-dose IG in a large proportion of patients with infection-related ME/CFS.”
Reality check
While it was easy to find examples of areas that have had very little change since the 1990s, the reality is we have much more science about ME than we did 30 years ago. The following are a few examples:
We know about many possible biomarkers. I wrote about that HERE.
We know about TRPM channelopathies. I wrote about that HERE.
We know more about persistent viruses. I wrote about that HERE.
In 2011 the ME International Consensus Criteria (ME-ICC) was written to more carefully select patients who have ME. It pulls that more specific group out of the diverse CFS pool of people.
In 2012 experts in the biology of ME wrote the Myalgic Encephalomyelitis – Adult & Paediatric: International Consensus Primer for Medical Practitioners that provides information to diagnose and treat ME.
Many researchers have now done biological research on people who contracted ME as defined by the ME-ICC. See list of some of that research HERE.
I think we need to make it clear that we have decades of information about the reality of myalgic encephalomyelitis and that it is time we use what we know to move forward.
Aiming for a better future…
Colleen
Information provided here or in comments is not to be considered medical advice