Coronavirus (CoVid-19) and #MyalgicE

(Note: NEW! information is put at the top of this blog, and will later be moved to its subject matter location.)

UPDATED 01/14/22 - 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.

Much of this information is outdated, but it being left within the blog to show changes over time (and how little we know of the situation).

Covid-19 Stats:
Worldwide and by Country by Worldometer (updated daily)
HERE is a link to a document, last updated 15 July 2020, from the London Business School on the "economics of a pandemic".  Chapters of interest include science, health policies, economics, and macroeconomic policies.
​
06/16/20 - An interactive map and daily updates can be found HERE from CovidActNow.  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.

NEW INFORMATION:

01/14/22 - This LINK to the Infectious Disease Society of America's IDSA Guidelines on the Treatment and Management of Patients with COVID-19 (updated 04 Jan 2022) addresses recommended medications and testing,  This is information your doctor should know if you contract COVID.
Also, this article Advice for Long-Haulers, from the Life-Longers by Megan Doherty (04 Dec 2020) notes how the ME community has "dealt with long-haul-like symptoms for years" .

Quercetin is a proven antiviral compound, which could be taken at the first sign of catching COVID-19.  This 2020 article "A Role for Quercetin in Coronavirus Disease 20119 (COVID-19)" addresses that.

Click below to go to the chosen topic directly:
Signs & Symptoms
Contamination
Getting Tested
Sanitizing
What You Can Do
Practical Links
Caregivers
Public Support / Mutual Aid Groups
Studies / Research
Other Information

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.

06/02 - Here's a link for Museums that offer virtual tours.  Hours of intellectual browsing!

 

SIGNS & SYMPTOMS

We have learned a lot since our original post on 20 Feb 2020.  In addition to the usual symptoms, new unusual symptoms are showing up.  See this AAPP article titled "Unusual Symptoms of COVID-19 You Need to Know About".  These are listed above the 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):

• COVID Toes - red or purple lesions/rashes on patients' hands and feet
• loss of taste or smell
• mild to severe hallucinations
• possible hearing loss

Typical Symptoms:

• fever, dry cough, fatigue, sputum production
• shortness of breath, sore throat, headache, dizzines, confusion
• Digestive symptoms - loss of appetite, diarrhea, nausea or vomiting, abdominal pain
• myalgia or arthralgia, chills
• nasal congestion, hemoptysis, conjunctival congestion

11/28 - New/updated info is shown, with a good graphic of "Where COVID Goes" can be found HERE.

07/09 -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.

 

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 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:

• 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.)
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.

02/18/21 - from CovidActNow - Hydrating the Respiratory Tract: An Alternative Explanation Why Masks Lower Severity of COVID-19 by Courtney - 02 Feb 2021 - "A study demonstrates how using masks, including cloth masks, increases the humidity of the air that a person inhales. Mask wearing promotes hydration of the respiratory tract, which increases the respiratory track’s general immune defense against infections and prevents viruses from reaching the lower respiratory tract. The researchers suggest that this change might be one of the ways that even wearing cloth masks decreases our chances of getting COVID."
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

12/23/20 - HERE are some mask tips from AARP for: how to fit and wear your mask, what materials are best, and mistakes to avoid.

12/27/20 - Dr. Hillman of Huntersville, NC answers "Should I take the COVID-19 vaccine when it becomes available?" (pertaining to CFS and FM patients).
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

• 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."

 

CAREGIVERS:
Care Alliance Ireland - Creating a Backup Plan: Covid-19 and Family Carers
12/15/20 - HERE's a FACT SHEET FOR RECIPIENTS AND CAREGIVERS from Pfizer regarding their BIONTECH Covid-19 vaccine.  Please make note of the warnings included for those with allergies & immune system issues, and that what you should tell your vaccination provider.
06/13/20 - 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 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. ​

 

STUDIES / RESEARCH:

• 12/20/20 - ME patients are known to have Blood-Brain Barrier issues.  Results from this recent study:  “… show that intravenously injected radioiodinated S1 (I-S1) readily crossed the blood–brain barrier in male mice, was taken up by brain regions and entered the parenchymal brain space. I-S1 was also taken up by the lung, spleen, kidney and liver.  Intranasally administered I-S1 also entered the brain, although at levels roughly ten times lower than after intravenous administration.”  So WEAR YOUR MASK!!
• 12/15/20 - Re: Long covid: doctors must assess and investigate patients properly by Nina Muirhead (09 December 2020) - A response to the original article by Lokugamage, Bowen and Blair, regarding the link between post-COVID patients and those having ME.  "Long COVID and ME/CFS are complex and heterogeneous. Both need greater recognition and research. The worst outcome would be to ignore or dismiss both. There is a pressing need for better education so that we can take the right approach and avoid causing patients harm."
• 11/28/20 - Attack on Red Blood Cells a Prime Suspect in COVID’s Debilitating Effects
  by Chris Casey (17 November 2020) - The lingering oxygen-level difficulties are explained by the lifespan of red blood cells. The cells circulate for up to 120 days before the body replaces them. To make room for hemoglobin, red blood cells have evolved to lose nuclei and organelles that allow other cells to replace damaged molecular components. So if the virus damages red blood cells, it will be up to four months before they are cleared and replaced with cells that do not carry such damage.
• 10/10/20 - Coronavirus and the brain: Diagnosing and treating COVID-19's neurological effects by John F. Connolly (23 July 20) - "COVID-19’s “neuro-invasive” features are leading to calls to prepare for the consequences of the daunting relationship between COVID-19 and neurologic pathologies. As more patients recover, we need to continue to monitor them as they return to their everyday lives. Are they functioning as they did before they caught the virus? Or are they experiencing difficulties returning to work, with complications concentrating or maintaining focus?"
• 8/29/20 - 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."
• 09/01/20 - 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

 

OTHER INFORMATION:

• 02/17/21 - from CovidActNow - Internet search patterns reveal clinical course of COVID-19 disease progression and pandemic spread across 32 countries by Lu & Reis (USA) - 11 Feb 2021 - "A study analyzed internet search trends related to COVID across 32 countries, finding that increases in COVID symptom-related searches preceded increases in reported COVID cases and deaths by an average of 18.5 and 22 days, respectively. Using the pattern of search terms, the timing of the appearance of COVID symptom was determined to be fever, dry cough, sore throat, and chills, first, followed by shortness of breath about five days afterwards. This result correlates with the clinical course of COVID as described in the medical literature. The study shows that internet searches can be used for real-time tracking of COVID and other infectious diseases at a population scale."
• 5/17/20 - Coronavirus (COVID-19) and Gulf War Illness (15:24) is an audio link by Dr. Nancy Klimas.  Since GWI is a Complex Immunological and Neurological Disease (CIND), the information given is pertinent to ME also.  She highlights the importance of taking antioxidants (CoQ10 ubiquinol at 100mg (or ubiquinone at 300mg), NAC at 600mg 2x/day, Vitamin C at 500mg 2-3x/day, and Isoprinosine (dosage on bottle) 5 days/week), AND notes that if you cannot hold your breath for 10 seconds, it's time to go to the ER.
• What Antibody Studies Can Tell You — and More Importantly, What They Can’t by Caroline Chen (ProPublica) "... here’s a primer on what they do, how they should be properly wielded and how you, a critical reader (or journalist), can interpret a study that’s hot off the presses." (4/28/20)
• Why smart people believe coronavirus myths by the BBC.  "...we are seeing a fresh inundation of fake news – this time around the coronavirus pandemic. From Facebook to WhatsApp, frequently shared misinformation include everything from what caused the outbreak to how you can prevent becoming ill." (4/6/20)
• Answers to your DIY face mask questions, including what material you should use by the Washington Post (4/9/20), AND a (download) link to the CDC instructions for making and using face masks.  Even the ARMY has done testing and has recommendations for how to make an effective face mask.
  5/25 - In addition to our previous information on DIY Face Masks from the Washington Post, CDC and ARMY, HERE is a good site on how to make masks from cloth, a T-shirt, a bandana, and denim from Happy DIY Home. It contains many helpful illustrations, making this endeavor very plausible.
• N95 vs FFP3 & FFP2 Masks - What's the Difference? by Fast Life Hacks.  A good tutorial on masks and respirators. (4/6/20)
• 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.
• 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.