News: 2024 Oct 20

Research lists, Fauci nightmare, book review, Nightingale Foundation and IV fluid shortage update

A few things I wanted to share (before I forgot).

Updated Research Lists

I am tracking research that I think is most likely to apply to those of us dealing with myalgic encephalomyelitis.  I appreciate the help maintaining these lists (especially my husband David).

I wrote about these lists in my previous article Myalgic Encephalomyelitis Research. 

● ME-ICC research

● ME-CCC research

So far in 2024 we have added 

• 13 papers published using ME-ICC participants

• 21 papers published using CCC participants

These include papers on immune system dysfunction, the importance of stratification of patient groups, abnormalities in the blood, abnormal cerebral blood flow, therapeutic effect of LDN, possible biomarkers and more. 

These are only the ones we have come across so far.  We welcome feedback if there is a paper you see that needs added.

This is our big boy Pugsley trying to put his paw into my water.  I have to make sure there is something covering the cup to keep him out of it.  He tries to knock the cap off… caught him in the act here.  He keeps us on our toes!

Fauci is a Nightmare

Anyone who is confused why so many of us who have been sick for a long time have animosity toward Fauci needs to read Hillary Johnson’s latest article.  She writes about how Fauci impeded progress into researching ME in her latest article Dr. Fauci's Nightmare. 

As I got sick in 1989, I saw all of this happening in real time.  This painful walk down memory lane is important to understand how we got here.  

Learning from the past is needed if we are going to turn the page to a better future!

Review of Miranda Hart’s book

I recommend reading the article Dear Miranda from The Long Covid Advocacy Substack.  Be warned it is a very long article.  It is broken up into bite sized sections which made it easier for me to read over a few sessions.

This article is written as a letter to Miranda Hart about her book I Haven’t Been Entirely Honest With You.  The article is asking Miranda Hart to consider the consequences of the narrative she has spun about being cured using various methods of behavior modification and changing her way of thinking.

I have not read the book so can only go by the in depth feedback offered in this article.

I truly appreciate the focus on the importance of recognizing that ME and chronic Lyme are biological diseases that can not be cured with behavior modification.

The brief synopsis of the article includes the following statement:

“An empathetic and thoughtful challenge to the assertions around the use of brain-training techniques to 'recover' from Lyme-induced ME contained within Miranda Hart's memoir”

I am concerned that using the term “Lyme-induced ME” will confuse readers.  Chronic Lyme is a very difficult disease in its own right.  ME is a distinct disease originally seen in outbreaks and understood to be caused by a virus (likely an enterovirus).  Chronic Lyme disease is a tick borne illness.  I’m sure it is possible to have both conditions, but I think Chronic Lyme and ME need to be differentiated in clinical care and in research.

The letter is cleverly written to take the reader through a variety of topics including:

• Medical abandonment

• History of ME being psychologized

• Biopsychosocial approach

• Brain rewiring model

• Disease prestige

• Advocacy is hard

• History of hysteria

• Lightning process

• Community

• Inclusivity

These and much more are covered in this letter to Miranda.  

Nightingale Research Foundation

I want to share some news about a website update from the Nightingale Research Foundation.  A bit about them for those who aren’t familiar - from their website:

“The Nightingale Research Foundation (NRF) is located in Ottawa, Canada.  The Foundation was founded by Dr. Byron Hyde in 1988, and incorporated as a charitable organization in the same year, to explore and understand Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (M.E. and CFS) and fibromyalgia-type illnesses.” 

Dr. Hyde has published various books about ME and the importance of proper diagnosis.  I have purchased more than one copy of Missed Diagnoses to give to doctors over the years.  

I also have a copy of Understanding Myalgic Encephalomyelitis.  Description for the book on their website states:

“This easy to read, hardcover, coloured, library-quality book with sewn pages is the best and most comprehensive book ever written on M.E. and CFS containing essential advice for patients and physicians.”

Reviews for this book can be found HERE.

I appreciate that Dr. Hyde presents clear information about the importance of separating ME from CFS.  From the website:

“M.E. and ME/CFS represent a complex, multi-system group of afflictions, adversely affecting the brain, heart, neuro-endocrine, immune and circulatory systems in our bodies, but, crucially, M.E. is a distinct illness, while both CFS and ME/CFS are umbrella terms for a group of symptoms common to many illnesses and conditions. 

This has led to M.E. symptoms being confused with the symptoms for neurasthenia, multiple chemical sensitivities, fibromyalgia syndrome, chronic mononucleosis, and much more.”

I wanted to get the news out that they recently added translations of some of their materials to their website.  

Français can be found HERE.

Español can be found HERE.

NOTE:  Dr. Hyde’s work does not specifically use the ME International Consensus Criteria (ME-ICC), but his in-depth knowledge of ME offers a complementary avenue to educate.

IV fluid shortage update

I was warned by the clinic where I get my weekly IV fluids infusion that they may have to curtail some services.  Hopefully any interruption to service won’t last long. 

I am aware that the Biden/Harris administration has invoked the Defense Production Act in order to remedy this as soon as possible, as explained in the US Health and Human Services notification HERE.

The latest update from Baxter looks promising:

“Baxter’s more than 2,500 North Cove employees are now returning to work at levels nearing pre-hurricane staffing across multiple round-the-clock shifts.

The team is focused on ongoing site remediation efforts and equipment assessment and management, working alongside an additional 1,000 remediation contractors that have been engaged for site cleanup and recovery.”

Thanks for reading! Please share anywhere you think this news will be helpful.

Aiming for a better future…

Colleen

Information provided here or in comments is not to be considered medical advice