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Disclaimer: 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, for your personal knowledge and to keep you informed of current health-related issues. It is not a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.

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Saturday, April 18, 2020

First Coast Integrative Medicine listing of Resources for exercise, recipes and COVID items


First Coast Integrative Medicine Contact 
(sign up for email newsletters and helpful updates)



Resources for exercise and recipes

        www.yogamovesms.org
        https://www.msworkouts.com/
        https://nutritionstudies.org


COVID-19 Wellness Resources

  
Resources for making and ordering masks

       https://www.thestytchbytch.com/collections/face-masks/Face-Masks


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4-7-8 BREATH

Provided by Megan Weigel, DNP - from First Coast Integrative Medicine



Of course you can print, hang in your home, and practice whenever you want



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Thursday, April 16, 2020

NARCRMS ENROLLMENT MILESTONE: 700 MULTIPLE SCLEROSIS PARTICIPANTS ENROLLED

**A press release shared with kind permission of our society partner, the Consortium of Multiple Sclerosis Centers (CMSC)**
Patient Registry is a Collaborative Public-Private Partnership Under the Auspices of the Consortium of Multiple Sclerosis Centers (CMSC)
(Hackensack, NJ, March 2020) — The North American Registry for Care and Research in MS (NARCRMS) is pleased to announce enrollment of its 700th patient on Wednesday, February 26, 2020. NARCRMS anticipates enrolling up to 1,250 patients across 30 sites in the US and Canada. The registry is committed to recruiting patients of diverse ethnic and racial backgrounds, with over 150 Hispanic patients and approximately 75 patients that self-identify as Black or African American enrolled to date.
The mission of NARCRMS is to provide clinicians and researchers with a greater, more integrated ability to track the incidence, prevalence and course of multiple sclerosis. Through information sharing, the registry seeks to improve the understanding of MS and facilitate care at every level. NARCRMS is unique as the first open source MS registry in the US and Canada that provides de-identified data to all stakeholders.
NARCRMS is a highly collaborative effort involving other MS registries, clinicians, researchers, and people living with MS and is endorsed by the National Multiple Sclerosis Society.
Read more


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Beyond Motor Symptom Wearing-off in Parkinson’s Disease – What Are We Missing?


European Neurological Review. 2020;15(Suppl. 1):2–7

Abstract

In the treatment of Parkinson’s disease (PD), wearing-off refers to the recurrence of motor (and non-motor) symptoms typically preceding scheduled doses of anti-parkinsonian medication. These can exert a substantial functional burden on the patient, are a frequent occurrence in patients with PD, can occur early in the disease, and most individual symptoms are progressive. As such, efforts should be made to detect wearing-off as early as possible so that appropriate therapeutic action can be taken to mitigate symptoms. Here we present the highlights of a satellite symposium held at the 2019 International Congress of Parkinson’s Disease and Movement Disorders, Nice, France, discussing the clinical spectrum of wearing-off symptoms, including both motor and non-motor features, the challenges clinicians face in the management of wearing-off, our current understanding regarding the time course of motor fluctuations and how this has evolved beyond the classical view of PD staging, and available treatments to mitigate both motor and non-motor symptoms.

Keywords

#Parkinson’s disease, wearing-off, motor symptoms, non-motor symptoms

Disclosure

Olivier Rascol has served as a consultant or on advisory boards for AbbVie, Adamas, Acorda Therapeutics, Addex, AlzProtect, Apopharma, AstraZeneca, Bial, Biogen, Britannia, Bukwang Pharmaceutical Co., Ltd, Clevexel, Denali Therapeutics, INC Reasearch, Lundbeck, Lupin, Merck, MundiPharma, Neuratris, NeuroDerm, Novartis, ONO Pharma, Osmotica, Oxford Biomedica, Parexel, Pfizer, Prexton Therapeutics, Quintiles, Sanofi, Servier, Sunovion, Theranexus, Takeda, Teva, UCB, Vectura, Watermark Research, XenoPort, XO and Zambon; has received grants from the French National Research Agency (ANR), University Hospital Centre of Toulouse, France Parkinson, INSERM-DHOS Translational Clinical Research, Michael J Fox Foundation, Hospital Clinical Research Program and the European Commission (Horizon 2020, 7th Framework Programme); and an honorarium to participate in a symposium and contribute to the review of an article for the International Parkinson and Movement Disorder Society. Hubert Fernandez has acted as a consultant for Acorda Therapeutics, Amneal, Bial Neurology, CNS Ratings LLC, Denali Therapeutics, Kyowa Hakko Kirin, Pfizer, Partners Healthcare System/Parkinson Study Group, Revance Therapeutics, Sun Pharmaceutical Industries, Sunovion Research and Development Trust; as an independent contractor (including contracted research) for Acorda Therapeutics, Michael J Fox Foundation, Movement Disorders Society, National Institute of Health’s National Institute of Neurological Disorders and Stroke, Parkinson Study Group, Sunovion, Elsevier as the Editor in Chief of Parkinsonism & Related Disorders; and has been involved in teaching and speaking activities for the American Osteopathic Association, Bial, Cleveland Clinic, South Alabama Medical Science Foundation, Thoraxx Clinical Communications and Ultimate Medical Academy Education. Per Odin has received honoraria for consultancies, advisory boards and speaker activities from AbbVie, Britannia, Lundbeck, Nordic Infucare, Teva, UCB, Zambon and Bial; and has participated as an investigator in clinical studies performed by AbbVie and Britannia. Joaquim Ferreira has received payments for consultancy, advisory boards and grants from Abbott, AbbVie, Affiris, Allergan, Bial, Biogen, Fundação MSD (Portugal), GlaxoSmithKline, Grunenthal, Ipsen, Lundbeck, Medtronic, Merck Serono, Merz, MSD, Novartis, Solvay, Sunovion Pharmaceuticals, Teva and Zambon.

Compliance with Ethics

This article reports the proceedings of a sponsored satellite symposium and did not involve any studies with human or animal subjects performed by any of the authors.

Acknowledgements

Medical writing support was provided by Stuart Wakelin and Alex Lowe of Touch Medical Communications and funded by Bial


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Coronavirus and MS Reporting Database Announced by Consortium of Multiple Sclerosis Centers & National Multiple Sclerosis Society

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Wednesday, April 15, 2020

Five Strategies for Safe Shopping

Even if you’re staying home whenever possible and practicing social distancing guidelines, going to the grocery store can be stressful and put you at greater risk of infection. Fortunately, there are a growing number of grocery delivery and curbside pick-up services — from national companies like Amazon and Instacart to local markets and restaurants that are adapting to the crisis. Jean Dobbs walks you through how to successfully navigate some of the options

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Researchers Identify New Potential Targets for Stopping Nerve Loss in MS

April 13, 2020
Researchers from the Gladstone Institutes, the University of California, San Francisco, and others reported results of studies aimed at mapping out processes that contribute to nerve degeneration in progressive MS and other disorders. They also screened compounds with potential to interfere with nerve loss. This work was supported in part by the National MS Society.

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  • The team focused on activated innate immune cells in the brain and spinal cord called macrophages and microglia, which produce molecules that induce a condition called oxidative stress. Oxidative stress is the result of an imbalance of harmful molecules called “free radicals.” These are normally rendered harmless by antioxidants produced by the body, but this antioxidative process may not work correctly in MS.
  • Using advanced technologies, the team developed an “atlas” that profiles the landscape of complex interactions of these innate immune cells in the brain and gene activities involved in oxidative stress. This atlas uncovered new interactions and pathways that have potential to be targeted to protect the nervous system from degenerative processes.
  • As a proof of principle, they targeted one of the pathways by administering an anti-tumor compound called acivicin to lab mice with MS-like disease. Even in mice with longer-term disease, this compound reduced oxidative stress and ongoing nervous system damage.
  • Although acivicin itself is too toxic to be developed for the treatment of MS or other neurodegenerative disorders, this work represents an important step forward in identifying “druggable” pathways that may lead to the development of treatments to stop nerve loss and progression in MS. 
“Transcriptional profiling and therapeutic targeting of oxidative stress in neuroinflammation,” by Drs. Andrew Mendiola, Katerina Akassoglou and collaborators, was published early online on April 13, 2020 in Nature Immunology.
 
Read more details on the Gladstone’s website
 
Read the scientific abstract
 


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People with MS and their Healthcare Providers Can Contribute to a Worldwide Research Effort to Improve Coronavirus Outcomes


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April 8, 2020
Collaborators around the world are implementing programs for collecting important information about the impacts and outcomes of COVID-19 infection in people living with MS and related disorders. These efforts will help healthcare providers identify the best way to handle this infection in people with MS, and will give people with MS the information they need to achieve the best outcomes.
 
For People with MS: For people living with MS, the iConquerMS™ online portal has created a survey so that people can share their experiences coping with the COVID-19 pandemic and what their personal experience has been with COVID-19.
 
We are interested in learning:
  • What people living with MS know about COVID-19
  • How COVID-19 directly affects people with MS
  • If COVID-19 has resulted in a change in the treatment or quality of life of people with MS
  • What factors affect individuals’ experience of the COVID-19 pandemic 
The iConquerMS platform empowers people living with MS to participate in research, and is governed and driven by people living with MS.The results will be shared with an international initiative gathering data from healthcare providers and people with MS across the world. Pooling COVID19 the data (with individuals’ privacy protected) together will help speed up research into COVID-19 and its effects on people with MS worldwide.
 
In addition to sharing the collected data with researchers, iConquerMS will also share statistics and study results with iConquerMS participants. 
Join the survey or iConquerMS here
 
Visit the Society’s Coronvirus Resources Page

For MS Healthcare Professionals: Collaborating organizations including the National MS Society and the Consortium of MS Centers have established the North American MS COVID-19 Clinical Database. Healthcare professionals caring for individuals with MS and other demyelinating diseases (Neuromyelitis optica or MOG antibody disease) who have confirmed or suspected COVID-19 are encouraged to report outcomes in a clinical data collection system.
 
This effort is harmonized with other international COVID-19 data collection platforms. The goal is to rapidly define the impact of COVID-19 on people with MS and other demyelinating diseases and how factors such as age, comorbidities, and treatments are associated with COVID-19 outcomes.


 
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Administration Releases Guidance on Non-Discrimination During COVID-19 Pandemic

March 30, 2020
On March 28, 2020, the U.S. Department of Health and Human Services’ Office for Civil Rights issued guidance regarding the obligation of states, health care providers and entities to comply with long-standing civil rights laws including the Americans with Disabilities Act, Rehabilitation Act and more that prohibit discrimination in health care on the basis of disability. The guidance comes amid worries about how people living with disabilities will fare as hospitals become overwhelmed by COVID-19 patients and may be forced to ration equipment and care.

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"As such, persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities,” reads the bulletin. “Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.”

The Society has been tracking on developments in the states (specifically in relation to certain states’ health department guidance) that may jeopardize the health of people with disabilities or other conditions. Additionally, we have begun to monitor and join complaints about policies that could jeopardize life-saving care for people with disabilities during health emergencies. We will continue to monitor this situation at the federal and state levels. If you have questions or concerns please contact an MS Navigator

Source: NMSS

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COVID-19 Nutrition Guide

Information provided by NewMobility.com 

COVID-19 nutrition
Staying healthy is on everyone’s minds right now, and diet and nutrition play a huge part in helping your body battle COVID-19. To get the best advice on how to keep your immune system strong, we talked with longtime New Mobility contributor Joanne Smith. Smith is a certified nutritionist and the co-author of Eat Well, Live Well with Spinal Cord Injury & Other Neurological Conditions. We asked her what to eat, where to shop and how to stock up for weeks at a time, all without breaking the bank. 
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New Mobility: You’ve been working overtime to stay up to date on the latest dietary and nutrition advice for combating COVID-19. What is the general advice you are giving clients?


Joanne Smith: On top of all the basics, like hand washing and social distancing, it’s so important for us to support our immune system as much as possible. Eating a balanced diet is not going to prevent you from getting COVID-19. But if you catch the virus, you want to have the strongest immune system possible to help fight it.

Click here to continue reading

One thing to keep in mind as you continue reading this article: 
Please disregard where it reads to help build your immune system.
reminder: With MS, our immune systems are already over-active. 
Normally, we do not need an immune system builder. 
PLEASE speak with your medical office before ingesting anything to increase our immune system. 

Eating healthy is a natural way in which to keep your immune system healthy.

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Experts red-flag need for Covid-19 mental health research

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Face masks for the public during the covid-19 crisis

BMJ 2020369 doi: https://doi.org/10.1136/bmj.m1435 (Published 09 April 2020)Cite this as: BMJ 2020;369:m1435


  1. Trisha Greenhalgh, professor1,  
  2. Manuel B Schmid, consultant23,  
  3. Thomas Czypionka, chief health economist4 5,  
  4. Dirk Bassler, professor2 3,  
  5. Laurence Gruer, professor6 7
    Author affiliations
  1. Correspondence to: T Greenhalgh trish.greenhalgh@phc.ox.ac.uk
Trisha Greenhalgh and colleagues argue that it is time to apply the precautionary principle
The precautionary principle is, according to Wikipedia, “a strategy for approaching issues of potential harm when extensive scientific knowledge on the matter is lacking.” The evidence base on the efficacy and acceptability of the different types of face mask in preventing respiratory infections during epidemics is sparse and contested.12 But covid-19 is a serious illness that currently has no known treatment or vaccine and is spreading in an immune naive population. Deaths are rising steeply, and health systems are under strain.
This raises an ethical question: should policy makers apply the precautionary principle now and encourage people to wear face masks on the grounds that we have little to lose and potentially something to gain from this measure?3 We believe they should.

Evidence and guidelines

Evidence based medicine tends to focus predominantly on internal validity—whether primary research studies were “done right”—using tools to assess risk of bias and adequacy of statistical analysis. External validity relates to a different question: whether findings of primary studies done in a different population with a different disease or risk state are relevant to the current policy question. We argue that there should be a greater focus on external validity in evaluation of masks.
A rapid search of the literature on the wearing of masks by the general public during epidemics or pandemics by a team at the University of Galway (E Toomey, personal communication, 29 March 2020) found five peer reviewed systematic reviews:
  • An “empty review” published on 27 March 2020—that is, a review showing no randomised trials of masks so far during the covid-19 pandemic4
  • A 2020 systematic review5 comparing standard surgical masks and respirator masks, which included a single small trial from 2009 of respirator masks, standard masks, and no masks among the general public during an influenza epidemic in Australia.6 That trial, which was considered robust, showed a benefit of masks over no masks, but no benefit of respirator masks over standard ones, and also showed that masks were worn less than 50% of the time
  • A 2011 Cochrane review covering physical interventions and including 67 studies (many of poor quality), in which the main relevant study was the 2009 trial described above7
  • A 2010 systematic review of face masks in influenza epidemics, which included standard surgical masks and respirator masks and found some efficacy of masks if worn by those with respiratory symptoms but not if worn by asymptomatic individuals.8
  • A 2007 systematic review and expert panel deliberation, which acknowledged the difficulties in interpreting evidence and stated: “With the exception of some evidence from SARS, we did not find any published data that directly support the use of masks … by the public.”9 The evidence from SARS was not set out in the paper (so we assume it was expert opinion on the panel).
Two further systematic reviews have since been released as preprints. Xiao and colleagues reviewed non-pharmaceutical measures for prevention of influenza.10 They identified 10 randomised controlled trials published between 1946 and 2018 that tested the efficacy of face masks (including standard surgical masks and commercially produced paper face masks designed for the public) for preventing laboratory confirmed influenza. A pooled meta-analysis found no significant reduction in influenza transmission (relative risk 0.78, 95% confidence interval 0.51 to 1.20; I2=30%, P=0.25). They also identified seven studies conducted in households; four provided masks for all household members, one for the sick member only, and two for household contacts only. None showed a significant reduction in laboratory confirmed influenza in the face mask arm. The authors concluded: “randomized controlled trials of [face masks] did not support a substantial effect on transmission of laboratory-confirmed influenza.”10
A preprint of a systematic review published on 6 April 2020 examined whether wearing a face mask or other barrier (goggles, shield, veil) prevents transmission of respiratory illness such as coronavirus, rhinovirus, tuberculosis, or influenza.11 It identified 31 eligible studies, including 12 randomised controlled trials. The authors found that overall, mask wearing both in general and by infected members within households seemed to produce small but statistically non-significant reductions in infection rates. The authors concluded that “The evidence is not sufficiently strong to support the widespread use of facemasks as a protective measure against covid-19”11 and recommended further high quality randomised controlled trials.

Contested interpretations

The heterogeneous and somewhat sparse primary literature described above has been inconsistently interpreted by policy makers. The World Health Organization, for example, recommends masks only for those with symptoms suggestive of covid-19, stating that masks should otherwise be reserved for healthcare workers.12 However, elsewhere WHO acknowledges that the wearing of masks by the general public has a place in severe pandemics, since even a partial protective effect could have a major influence on transmission.13
The US Centres for Disease Control and Prevention originally advised the public against wearing masks during the covid-19 pandemic, but this advice was updated on 4 April 2020 (box 1).14
Box 1

CDC advice on use of face masks by the general public14

  • Cover your mouth and nose with a cloth face cover when around others
  • You could spread covid-19 to others even if you do not feel sick
  • Everyone should wear a cloth face cover when they have to go out in public—for example, to the grocery store or to pick up other necessities
  • Cloth face coverings should not be placed on children under age 2 or on anyone who has trouble breathing or is unconscious, incapacitated, or otherwise unable to remove the mask without assistance.
  • The cloth face cover is meant to protect other people in case you are infected
  • Do not use a face mask meant for a healthcare worker
  • Continue to keep about 6 feet (2 m) between yourself and others. The cloth face cover is not a substitute for social distancing
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None of the studies mentioned above tested the makeshift cloth masks that CDC has recommended. To our knowledge, there are no trials of cloth masks in the general public. A three arm trial of cloth masks versus surgical masks versus “standard practice” in preventing influenza-like illness in healthcare staff found that cloth masks were the least effective, but “standard practice” usually involved a surgical face mask and there was no true control arm with no masks.15

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