Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Research Survey Opportunity CV19 and rare diseases

Rhanson
Rhanson

I got an email about a research study survey on how Covid-19 affects those of us with rare diseases.   I got the email as I am on the MG Registry.  An NIH research study.  


https://www.rarediseasesnetwork.org/covidsurvey  


The novel coronavirus pandemic is impacting people with rare diseases and their families. Those impacts can be related to physical health, emotional health, availability of supplies, access to care, or other problems. Your responses may help researchers understand the impacts of COVID-19 on the rare disease community. Learn more in this press release about the survey.   I


https://ncats.nih.gov/news/releases/2020/nih-supported-research-survey-to-examine-impact-of-covid-19-on-rare-diseases-community


Those of us with MG are considered having a rare disease (yes we are extra special).  My own response to Covid-19 is to be absolutely scrupulous about wearing a mask in public, social distancing, staying away from most shopping having my groceries shopped for me, and buying most stuff online for delivery.  No group events.  I have hand sanitizer with me and just don't visit in person. I postponed my appointments although I did have to go to the dentist.  


Hope you are Covid-safe


Russ


sseibert3
sseibert3
Thanks Russ -

Took the survey. :-)
cgreens
cgreens
They don't want to hear from me. All of us have had so much time to question the narrative instead of accepting the perception of a "virus" being spread around as an infectious disease when nothing has been done to show this is true. I have posted quite a bit on here about this and Russ, you dismissed it as conspiracy theory but the truth is out there. The test is the scam. That is the easiest way to put it We have all been had. Asymptomatic people are not sick people and are not spreading anything. Because I fall on deaf ears in so many places, I simply challenge people to do the research and no just accept what we are told. Especially when freedoms are taken away. Question everything.

They performed the postulates with MG, proving it is a real disease based on symptoms. This should always be done when.something is said to kill people or is supposedly infectious. Unfortunately, it hasn't been done with Covid and a number of other supposed viruses over the years. Good luck everyone.

TJ from CA
Nanosecond
Nanosecond
Russ, my approach has been the same as yours. Since many of the restrictions have been lifted, fewer people in our area have been wearing masks, and in the last week our county has seen the incidence of new covid-19 cases increase dramatically.

I joke that I am going to be the last person on covid-19 lockdown -- kind of like the Japanese soldier in WW 2 who didn't surrender until 1974. ;-)