UPDATED 5/30/20 - Added links to the scripts of both videos (below).
ME International has recently released its first video, entitled "Myalgic Encephalomyelitis - Understanding Diagnosis" on our YouTube Channel.
Click HERE for the LONG version - Transcript
Click HERE for the SHORT version - Transcript
Many different disease descriptions have been created since the recognition and labeling of ME by Dr. Ramsay in the 1950s. Several criteria later broadened the patient population to include many patients who did not fit the original description.
In 2011 a group of experts with over 500 years of combined experience created a consensus criteria known as the International Consensus Criteria (#MEICC). ME-International supports the adoption of the #MEICC and the International Consensus Primer for ME (#MEICPrimer), which is a comprehensive primer for doctors.
We strongly believe that adoption of the #MEICC will ensure research is focused on the distinct ME patient population without including patients who fall into the wider category known as ME/CFS-SEID or CFS-Fukuda.
These videos discuss the history of ME, the lived experience, including recognition of the most severe patients, a full description of how to diagnose using the International Consensus Criteria as well as the challenges of getting a diagnosis. Proper diagnosis is vital for patients to get proper treatment.
ME-International believes that worldwide adoption of the #MEICC to diagnose and treat, is the fastest way to improve the quality of life of people with ME.
Information not to be considered medical advice.
ME ICC: https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02428.x
IC Primer: https://d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/2292/attachments/original/1554817421/Myalgic_Encephalomyelitis_International_Consensus_Primer_2012.pdf?1554817421
Please sign the #PwME4ICC petition at Change.org at https://www.change.org/p/the-us-department-of-health-and-human-services-cdc-adopt-the-distinct-disease-myalgic-encephalomyelitis-me-as-defined-by-icc-now
(Note: NEW! information is put at the top of this blog, and will later be moved to its subject matter location.)
UPDATED 09/06/20 - People with Myalgic Encephalomyelitis (#pwME) are experienced at dealing with a dysfunctional immune system, which includes social distancing and avoiding viral infections. We could teach the world a thing or two about how it's done ... if only they'd listen. We will try to update this blog as additional information comes to light.
9/01 - A Supercomputer Analyzed Covid-19 - and an Interesting New Theory Has Emerged by Thomas Smith. "The [bradykinin] hypothesis provides a model that explains many aspects of Covid-19, including some of its most bizarre symptoms. It also suggests 10-plus potential treatments, many of which are already FDA approved." There are also Bradykinin connections related to ME (the regulation of blood pressure and a breakdown of the blood-brain barrier). ~ MEI
8/29 - Effect of Calcifediol Treatment and best Available Therapy versus best Available Therapy on Intensive Care Unit Admission and Mortality Among Patients Hospitalized for COVID-19: A Pilot Randomized Clinical study by Castillo, Costa, Barrios, Díaz, Miranda, Bouillon and Gomez (Spain, Belgium) - "The vitamin D endocrine system may have a variety of actions on cells and tissues involved in COVID-19 progression."
8/19 -Dr. Monica Gandhi on Why Wearing a Mask is Crucial for Containing COVID - "Dr. Monica Gandhi (MD, MPH University of California San Francisco) breaks down how mask usage has contributed to both reducing the infection rate and severity of COVID through a series of examples, and discusses what you can do to help mitigate the impact of the pandemic in your community." ~ COVID Act Now
7/3 - HERE's a PDF update (7/2/20) from Covid ActNow. The interactive map and daily updates can be found HERE. Signup for their email at covidactnow.org/alert_signup.
COVID Act Now is a multidisciplinary team of technologists, epidemiologists, health experts, and public policy leaders working to provide disease intelligence and data analysis on COVID in the U.S. Partnering with Georgetown University and Stanford Medicine; click HERE to enter your state to see its current progress. (6/16/20)
DIVERSIONS, HUMOR, AND ME WRITINGS
Before we start, HERE is a pdf with Diversions, Humor, and ME Writings. The link/document for Things-To-Do has been moved into this pdf. If you have additional suggestions, please send them to David.Steckel@ME-International.org.
6/2 - Here's a link for Museums that offer virtual tours. Hours of intellectual browsing!
SIGNS & SYMPTOMS
Typical signs and symptoms for Coronavirus include (from the Report of the WHO-China Joint Mission on Coronavirus Disease 2019 (COVID-19) 20 Feb 2020):
7/9 -NBC News reports WHO acknowledges 'emerging evidence' of airborne spread of COVID-19. The agency said it will release a scientific brief on all modes of transmission in the coming days. With additional information HERE. There's a growing consensus that tiny viral particles can spread through singing, speaking loudly, or breathing heavily, in addition to respiratory droplets, usually from sneezes or coughs.
Virus can live on objects for various periods of time. How to clean these surfaces can be found in THIS BBC ARTICLE (3/17/20). An article from the Journal of Hospital Infection titled "Persistence of coronaviruses on inanimate surfaces and their inactivation with biocidal agents" has a pretty comprehensive table of different surfaces and times. (March 2020)
The current parameters for getting a COVID-19 test often include fever. As ME includes a dysfunctional immune system, many pwME have a lower than normal base temperature and may not exhibit a fever when ill. Doctors may be more willing to recognize a fever if there is a baseline record of lower than average temperature. The following information may be helpful to share with medical professionals if testing is denied due to lack of fever.
Patients may want to have a copy of the following on hand:
1. The IC Primer can help doctors understand the unique biological abnormalities of ME.
2. Dr. Weir and Dr. Speight of the 25% M.E. Group put out a notification (download) regarding severe ME patients and Coronavirus. "PWME should be aware of the fact that they sometimes do not develop a fever when they acquire a virus infection."
3. Emergency Room Info for People with ME - This document contains information compiled from patient input and expert documents to assist patients and caregivers in communicating with medical professionals.
More info on lack of fever:
Use bleach or 70%+ alcohol to kill virus on surfaces. A recipe for a 1:10 bleach spray solution is provided by VeryWellHealth.com as: "1 part bleach for every 9 parts water. A good amount to start with is 1/4 cup bleach and 2¼ cups of water. Carefully pour the bleach into the spray bottle or jar first, then add the water. Mixing the solution in this order will prevent the bleach from splashing up on you." (1/5/20) NOTE: It may be safer to add bleach to the water, even though bleach is basic and not acidic. (Thank you M.R.)
NOTE: A bleach solution can lose its potency over a couple of days. HERE's an informative blog from Clorox discussing this. (7/4/20)
Recipes for hand sanitizers can be found on the web. Ingredients may include isopropol or rubbing alcohol (or very high proof drinking alcohol like Everclear), aloe vera gel or xanthan gum for thickening, and essential oils or lemon juice for fragrance. Be sure to follow the recipe closely, as too little [alcohol] can make it ineffective and too much can dry out your hands. Best advice is to WASH YOUR HANDS and AVOID TOUCHING YOUR FACE.
These Common Household Products Can Destroy the Novel Virus by Consumer Reports shows you how to use them and which products to stay away from. (03/17/20)
WHAT YOU CAN DO
For personalized management and treatment information for ME, see the ME IC Primer starting on pg#13.
6/17 - Medical News Today's article Best available evidence supports physical distancing and wearing face masks "Until randomized controlled trials are conducted and can offer a greater degree of certainty, this study, which appears in The Lancet, provides doctors and policymakers with interim information on which to base key decisions." (6/4/20)
What I Learned From Nursing My Husband Through COVID-19 by Martha Campbell - This article discusses what was done at home to help minimize COVID-19 effects at home, as practiced by a couple who are medical professionals. (4/19/20)
Consider using acetaminophen (TYLENOL®) / paracetamol (EU) instead of ibuprofen. Read THIS from MastCellDisease.com. "Ian Jones, a professor of virology at the University of Reading, said that ibuprofen’s anti-inflammatory properties could “dampen down” the immune system, which could slow the recovery process."
HERE's a breathing exercise to enhance ventilation of the lungs in case of sickness or to prepare beforehand. Short summary:
5× breathe in deeply, hold, breathe out, then 1 strong cough
Repeat this cycle 2× , then breathe for 10 minutes laying on stomach/pillow to free up most of the lungs.
Review this 25% M.E. Group's notification (as a download from https://25megroup.org/download/1796/?v=3236) for guidance
Dr. Nancy Klimas talks about Coronavirus & ME/CFS (14:02 - 03/13/20)
Dr. Sarah Myhill advises on Treating Viral Infections (5:21 - 03/12/20)
See dosage info HERE and HERE.
Care Alliance Ireland - Creating a Backup Plan: Covid-19 and Family Carers
6/13 - From AARP ...What to Do If You Have Coronavirus and No Caregiver to Help Experts provide tips on where to turn in a caregiving emergency (with a link for Spanish translation).
PUBLIC SUPPORT / MUTUAL AID GROUPS:
AARP - Find a Mutual Aid Group - "We have aggregated these mutual aid groups as a public resource. Because these groups are formed in local communities, we cannot verify or vouch for any group or individual offerings. Please exercise all necessary judgment when interacting with community members not previously known to you."
Collective Care Is Our Best Best Weapon Against COVID-19 - This is a "...growing list of mutual aid pandemic disaster care, in alphabetical order ..." compiled by Cindy Milstein for the US, Canada, Britain and Germany that is said to be updated daily as additional info is collected.
UK - FreedomNews.org - A long list of mutual aid groups throughout the country. "We have done our best to include all already existing mutual aid groups below. If your group is not listed, or you set one up after this text’s publication, please get in touch and we will fix it. You can reach us either via our Facebook page, or send an email to email@example.com.
U.S. - Seattle, WA - Office of the Mayor
U.S. - Nextdoor - Nextdoor is an app to connect neighbors. "Every neighbor must verify their address in the neighborhood. Every neighbor must use their real name. Nextdoor is securely encrypted using the HTTPS Internet protocol."
The North Carolina Dept. of HHS has established a website and a COVID-19 hotline. Check to see if your state has done the same. Your county may also be providing this service. The National Governors Association has "Current Information On The Status Of COVID-19 In The United States And Abroad, What Actions States/Territories Have Taken To Address It, And The Latest Efforts By The Federal Government" HERE.
During this time, your PC may also be under attack - more than normal. We will be adding to a link-list in THIS DOCUMENT to give you ways in which to help protect your IT world. These lessons are good to learn even after the current onslaught of hackers, etc. is diminished.
Worldwide and by Country by Worldometer (updated daily)
HERE is a link to a number of (updated) worldwide stats from the London Business School. You can do a CTRL F to find your country in question (or anything else). Chapters of interest include science, health policies, economics, and macroeconomic policies.
The information provided at this site is not intended to diagnose or treat any illness
and is not to be considered as medical advice.
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