Coronavirus (CoVid-19) and #MyalgicE

UPDATED 4/7/20 - (Note: NEW! Notations will be cleared every Monday.)

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.

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.

SIGNS & SYMPTOMS

Typical signs and symptoms for Coronavirus include (from the WHO):

• fever (87.9%)
• dry cough (67.7%)
• fatigue (38.1%)
• sputum production (33.4%)
• shortness of breath (18.6%)
• sore throat (13.9%)
• headache (13.6%)
• myalgia or arthralgia (14.8%)
• chills (11.4%)
• nausea or vomiting (5.0%)**
• nasal congestion (4.8%)
• diarrhea (3.7%)
• hemoptysis (0.9%)
• conjunctival congestion (0.8%).

**A report from Hubei, China states:  "We found that 99 patients (48.5%) presented to the hospital with digestive symptoms as their chief complaint. Patients with digestive symptoms had a significantly longer time from onset to admission than patients without digestive symptoms (9.0 days vs. 7.3 days). Patients with digestive symptoms had a variety of manifestations, such as anorexia (83 [83.8%] cases), diarrhea (29 [29.3%] cases), vomiting (8 [0.8%] cases), and abdominal pain (4 [0.4%] cases)..."

CONTAMINATION

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)

• AIR:  up to 3 hours 
• COPPER: up to 4 hours
• CARDBOARD: up to 24 hours (setting aside mail for a day makes sense)
• PLASTIC/STAINLESS STEEL: up to 2-3 days  

Source: NEJM Original Article - Aerosol and surface stability of HCoV-19 (SARS-CoV-6 2) compared to SARS-CoV-1 (pg#3)

GETTING TESTED
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.

• Loss of thermostatic stability: e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities. pg #8
• The initial infection may cause profound dysregulation of the immune system, which in turn may result in persistent infection or abnormal immune response. pg #5

2. Dr. Weir and Dr. Speight of the 25% M.E. Group put out 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:

• Immune Deficiency Foundation COVID-19 Update - "..many individuals with a primary immunodeficiency (PI) report that they don’t run a fever even when they have contracted a serious viral infection." 
• Cohen Children's Northwell Health Body Temperature in Patients with Primary Immunodeficiency (pdf download) - "67.7% reported absence of fever with infection"

SANITIZING
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.)

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.

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."

NEW!  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

• Vitamin C
• Vitamin D
• Zinc

Dr. Nancy Klimas talks about Coronavirus & ME/CFS (14:02 - 03/13/20)

• 0:33 Risks of exposure
• 1:28 What you should do
  • Wash hands, disinfect, social distancing etc.
• 2:30 Virus lifecycle
• 3:38 Products that may help prevent
  • Xylitol based nasal spray (may be easier to find in the allergy aisle)
  • Cellulose spray (Canada & Europe)
• 4:50 Asthmatics
• 6:45 Supplements (dosage and warnings in video)
  • Vitamin C
  • NAC (N Acetyl Cysteine)
  • Co Q10 in the ubiquinol form
  • Liposomal glutathione
  • Carnitine
  • Methyl B12
  • Methyl Folate
• 9:34 Antivirals (dosage and warnings in video)
  • Isoprinosine (U.S.)
  • Immunovir (Canada & Europe)
• 11:55 Don't Panic

Dr. Sarah Myhill advises on Treating Viral Infections (5:21 - 03/12/20)

• Iodine with salt pipe
• Vitamin C

NOTE: High doses (>2,000 mg daily) of vit C can cause digestive and other issues. 
            See dosage info HERE and HERE.

PRACTICAL LINKS:

• HowToGetOn - Newest News In the Time of Coronavirus  Many useful links on many different subjects.  [There's a link to the previously posted 50 State Guide to Unemployment & Paid Leave During Coronavirus within this site.]
• HowToGetOn - For those on Facebook there is a new page that will be posting information. Love & Discounts in the Time of Coronavirus - "A guide to food, money, and kindness during Coronavirus 2020."

CARERS:
Care Alliance Ireland - Creating a Backup Plan: Covid-19 and Family Carers

PUBLIC SUPPORT / MUTUAL AID GROUPS:
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 editor@freedompress.org.uk.

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. 

OTHER INFORMATION:

• NEW!  N95 vs FFP3 & FFP2 Masks - What's the Difference? by Fast Life Hacks.  A good tutorial on masks and respirators. (4/6/20)
  
• NEW!  Dealing with OCD and Coronavirus by Spoonie Living (3/31/20)
• Health Impact News - A Scientific Look at Botanical Plants and Supplements Against Coronavirus (3/15/20)
• iHerb The Blog - Coronavirus, Precautions, and Strengthening the Immune System (1/29/20)
• Healthline - 15 Impressive Herbs with Antiviral Activity (10/21/19)
• UK.gov - Face-to-face health assessments for benefits suspended amid coronavirus outbreak (3/16/20)
• Coronavirus Disease 2019: Resources from the American Academy of Otolaryngology - Head and Neck Surgery.  This covers topics like financial relief assistance, latest news from federal agencies, and more.
• Here's A Seattle Intensivist's One-Pager on COVID-19 pdf from Nick Mark, MD.  Of course we all know what an intensivist is (a board-certified physician who provides special care for critically ill patients - I had to look it up).  This one-pager is very technical, but still has good layman information within.
• That Discomfort You're Feeling is Grief - Harvard Business Review (3/23/20)
  David Kessler, the world’s foremost expert on grief, shares his thoughts on why it’s important to acknowledge the grief you may be feeling, how to manage it, and how he believes we will find meaning in it.
• NEW!  Bateman Horne Center - Useful medical information when treating COVID-19 in patients with underlying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and severe fibromyalgia (FM) - While this information is focused on those who have ME/CFS and Fibromyalgia, some information also applies to ME.  For general #MyalgicE treatment guidelines see the ME IC Primer starting on page 13.

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.

NEW!  Covid-19 Stats:
Worldwide and by Country by WorldoMeter (updated daily)