As a follow up to the Foundation’s published article from Dec. 20, 2020, “An Open Letter to Dr. A.S. Fauci, Director NIAID, NIH,” on January 15, 2021, Neurology Today published the following article “No Excess Risk for Neurologic Events Observed to Date from COVID-19 Vaccines.” Read the full article…
Adults of any age with certain underlying medical conditions are at increased risk for severe illness from the virus that causes COVID-19. mRNA COVID-19 vaccines may be administered to people with underlying medical conditions provided they have not had a severe allergic reaction to any of the ingredients in the vaccine. The following information aims to help people in the…
By Meg Mains The GBS-CIDP Foundation International hosted their FIRST Teen & Young Adult Zoom gathering on December 8th. It was a great way to meet other patients and share their experiences with GBS, CIDP, & variant conditions. Meg Mains, Youth, Teen, & Young Adult Team Lead, and Michael Coleman, YTA Spokesperson hosted the virtual…
(Please see the following open letter statement authored by members of the GBS|CIDP Foundation International medical community as referenced.) As clinician/scientists who have spent careers studying GBS, we are concerned that your statement on the “New Normal” television show about GBS and the COVID vaccine will have unintended consequences. Your statement is already all over…
This information is a public document and has been forwarded to the Foundations by our key opinion leaders in the GBS medical community. Of note, there is no mention of GBS in the vaccine insert, not as a risk nor as a vaccine to avoid for those who have had GBS or CIDP or are…
In reaction to recent research published in Brain (click here to read more), Professor Lunn has offered this guidance in regards to our community.
A UK based epidemiological study, linked below, has found no causal association between COVID-19 infection and Guillain-Barré syndrome. This means that GBS developing at the same time or close to that of COVID-19 is most likely coincidental.
CSF sphingomyelin: a new biomarker of demyelination in the diagnosis and management of CIDP and GBS Principal Investigators: Luana Benedetti, MD, PhD and Lucilla Nobbio, PhD, University of Genova, ITALY CIDP and GBS are immune-mediated neuropathies characterized by strong heterogeneity in terms of clinical manifestations, prognosis and response to treatment. They are treatable diseases and early…
On September 29, 2020, the GBS|CIDP Foundation International organized a patient-led listening session on Guillain-Barre Syndrome (GBS). More than 30 members of various branches within the FDA logged on to the virtual meeting to hear about patients’ experiences with GBS. The FDA’s role was to listen and learn about what life is like during and…
Plasma is the straw-colored liquid portion of blood that contains proteins that are essential for the human body, including antibodies and clotting factors. Antibodies (also known as immunoglobulins) play an important role in health and illness. Many patients living with CIDP, MMN or Variants regularly receive intravenous immunoglobulin (IVIG) subcutaneous immunoglobulin (SCIG) to treat the…
By Dr. Julie Rowin A publication from Dr. Julie Rowin’s Blog Post found at: julierowinmd.com The benefits of maintaining muscle mass at any age cannot be underestimated.Here’s why: Muscle is involved in brain function in a big way. Muscle directly communicates with the brain through chemicals and messengers such as brain-derived neurotrophic factor (BDNF). These chemicals…
Hey doc, are you sure this is CIDP? By Jeffrey A. Allen MD,University of Minnesota It’s ok to ask the question. Whether you’ve had the diagnosis for a day or a decade its ok to ask. You should ask. Do my symptoms make sense? Are my test results what you would expect for CIDP? Have…
By Kaitlyn Lorant PT, DPTYTA Committee Member For individuals with GBS or CIDP, rehabilitation is of the utmost importance. While in quarantine during the COVID-19 pandemic, it can be daunting to create new and engaging activities to maintain strength, flexibility, and aerobic endurance. This article compiles a list of some fun, yet feasible exercises and…
The American Association of Neuromuscular and Electrodiagnostic (AANEM) has awarded the 2020 Distinguished Physician Award to Peter Donofrio, MD, for his distinguished service as a clinician, educator and his overall support of AANEM.
In 2016 The GBS|CIDP Foundation awarded a research grant to Eduardo Nobile-Orazio, MD, PhD, FAAN, Professor of Neurology Neuromuscular and Neuroimmunology Service at Milan University. Dr. Nobile-Orazio’s 2016 study titled: An Italian Multicenter Network for the diagnosis and therapy of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and of its variants, contributed to the 2019 article: Risk factors for chronic inflammatory demyelinating polyradiculoneuropathy (CIDP): antecedent events, lifestyle and dietary habits. Data from the Italian CIDP Database., published by the EAN (European Academy of Neurology). Update: GBS|CIDP Foundation Research 2016 Grant Recipient, Dr. Eduardo Nobil-Orazio, published in Journal of Neurology, Journal of Neuroimmunology, and Wiley Online Library, and EAN.
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