Living with ME and FM through Coronavirus times

Updated: 2 days ago



This post is updated as new resources are shared with us.


With the rising threat of Coronavirus disease (COVID-19) and the aggressive new measures taken here in Canada to contain the outbreak, we are thinking of our community of British Columbians living with ME and FM. It's hard enough to cope with living with a complex chronic disease. The challenges become more acute during a pandemic that targets the immuno-compromised, the chronically ill and the elderly.


Following are some resources that we hope you will find useful:


COVID-19 and the vulnerability of the FM/ME/Lyme/Immuno-altered community


Government of Canada

The federal government has created a number of resources:

  • Coronavirus disease (COVID-19) page with updates, information about symptoms and treatment, prevention and risk, how to prepare, Canada's response, and latest statistic by province.

  • Coronavirus disease (COVID-19): How to care for a person with COVID-19 at home – Advice for caregivers

  • Infection Prevention and Control Canada (IPAC) has a Information about Coronavirus page, which includes a Hotline number, world statistics, history of the disease, information for infection prevention and control, and lots of links.

  • Health Canada has issued temporary exemptions for prescriptions of controlled substances under the Controlled Drugs and Substances Act (CDSA) and its Regulations. Read more here.

  • Bill C-20, an Act respecting further COVID-19 measures, received Royal Assent on July 27, ensuring that the Canada Emergency Wage Subsidy (CEWS) will continue to protect jobs by helping businesses keep employees on the payroll and encouraging employers to re-hire workers previously laid off. The Bill will facilitate the delivery of a one-time payment of up to $600 for people with disabilities who are either holders of a valid Disability Tax Credit (DTC) certificate, receive Canada Pension Plan-Disability Benefits (CPP-D) or Quebec Pension Plan disability benefits, or are in receipt of Veterans Affairs Canada disability supports. For the full government press release, read here... For assistance with Disability Tax Credit, go to the Disability Alliance BC (DABC) website.


British Columbia

  • The BC Center for Disease Control has a COVID-19 page which includes information on testing & isolation, childcare & schools, event planning, and a section answering common questions.

  • From the College of Pharmacists of British Columbia: Information about accessing medications, medication delivery, new rules allowing pharmacists to provide refills and emergency supply of prescription drugs.

  • CBC News: British Columbia Coronavirus Local Updates - CBC's ocal guide to the coronavirus outbreak. Get the latest advisories, updates and cancellations for where you live.

  • POVNET has an excellent updated COVID-19 Special Resources for British Columbians. PovNet is dedicated to building an online anti-poverty community, and is heavily rooted in social justice. We connect poverty and family law advocates and pro bono lawyers from across British Columbia working on issues like housing, income, workers’ rights, Indigenous legal issues, newcomers to Canada, and more.

  • Pain BC also has excellent information and support resources on their website.

  • TransLink update re: COVID-19 measures and people with disabilities - c/o of Disablities Alliance BC. 26 March 2020

  • BC Ministry of Social Development and Poverty Reduction announced on 2 April that British Columbians living on income and disability assistance who aren’t eligible for emergency federal support programs will receive a $300 crisis supplement for three months during the COVID-19 pandemic.

Source: Vancouver Sun


BC Women's Hospital / Complex Chronic Diseases Program (CCDP)


Message from the CCDP (25 March 2020)

All CCDP patients are being seen by tele-health or phone and have been very receptive to changes. We are doing everything possible to stay connected to our patients and support them at this time, without having to come on site, which is consistent with all of our programs right now.


We are referring all public and patients to the BCCDC website for COVID information.

____


BC Women's Hospital COVID-19 Information for Patients with answers to patients' frequently asked questions.



Cities and Regions

  • City of Vancouver: To help prevent the spread of COVID-19 and for the safety of our communities, collection and sorting staff, ensure medical waste like used tissues, wipes, face masks and gloves are not included in your recycling. Learn more on our website: RecycleBC.ca


Non-Canadian Resources

  • World Health Organisation (WHO): Could ibuprofen worsen disease for people with COVID-19? Based on currently available information, WHO does not recommend against the use of of ibuprofen. WHO is aware of concerns on the use of ibuprofen for the treatment of fever for people with COVID-19. We are consulting with physicians treating the patients and are not aware of reports of any negative effects, beyond the usual ones that limit its use in certain populations. (source)

  • Bateman Horne Center: Lucinda Bateman is an internationally renowned ME and fibromyalgia clinician. Her Bateman Horne Center "has compiled a list of resources and education aimed at keeping you informed and prepared during this difficult time." Among the resources are: medical considerations letter; COVID-19 and ME/CFS/FM frequently asked questions; discussion of relevant research; personal guidance and decision making, helpful links and informative videos.

  • Take this to the hospital: Useful medical information when treating COVID-19 in patients with underlying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and severe fibromyalgia (FM) - An excellent 2-page resource from Bateman Horne Center. Print double-sided if you can.

  • #MEAction: With their typical speed and professionalism, #ME Action has put together a COVID-19 webpage filled with great information. While some of it is specific to the U.S., much is general. In particular, they have a section specifically relating to ME.

  • Resource for Coronavirus & Fibromyalgia from National Fibromyalgia Association (U.S.)


Other

  • Read Sharon Murgatroyd's excellent letter to the editor, published on July 30 in The Province. Many thanks to Sharon who is a member of our BC ME community.

  • COVID-19 on CNN: ME patient/advocate, filmmaker  and CNN journalist, Ryan Prior, this week published an article on CNN Health, Chronic fatigue syndrome a possible long-term effect of Covid-19, experts say. In the article, Prior notes acknowledgement of the link between COVID-19 and ME by Dr. Anthony Fauci, the director of the National Institute of Allergy and Infectious Diseases. Prior also advises those suffering from COVID-19 to rest.

  • For many living with ME and fibromyalgia, being housebound is not new. For an honest and compassionate view on COVID-19 from someone who has been mostly housebound long before this current world health crisis, read Christina Wiebe's post: I have to get this off my chest.

  • Sarah Sweet is Deputy Editor of TVO.org. She also lives with ME And fibromyalgia. In her wry, nuanced, thoughtful article, I’ve been self-isolating (more or less) for 13 years, Sarah talks about how COVID-19 has forced many people to stay home alone.

  • Cort Johnson's article for Simmaron Research is excellent food for thought: Will COVID-19 Leave An Explosion of ME/CFS Cases in its Wake? Read and share! Read and share!

  • Wondering what's happening to ME research in this COVID-19 epidemic? In his April 20 article, ME/CFS Research During the Time of the Coronavirus: Shutdowns and Opportunities, Cort Johnson has checked in with a number of ME researchers, and it seems that while social distancing requirements have presented challenges, the epidemic has also presented many opportunities, not least of which is NIH interest in post-COVID-19 patients who fail to recover.

  • More on Covid-19 and ME by Cort Johnson: Seizing the Moment: International ME/CFS COVID-19 Research Effort Begins. With the NIH otherwise occupied, Open Medicine Foundation’s COVID-19 research effort is our best chance at helping both people with ME/CFS and COVID-19 patients who are having trouble recovering.  In fact, it’s the only effort going right now that seeks to directly understand and help the possibly many people, who, after surviving COVID-19, find their lives unalterably changed.

This is an opportunity not to be missed.


Here some great resources for in and out of Coronatimes:



Email us if you have any further questions or concerns.



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