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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, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it 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, January 24, 2015

PPMS news - 100th patient enrolled in multiple sclerosis study

Published 12:30 am Thursday, January 22, 2015
By Emily Ford 
For the Duke Translational Medicine Institute
A Raleigh medical practice has enrolled its 100th patient into a Duke University health research project working to end multiple sclerosis.
Raleigh Neurology Associates recently reached the 100-patient milestone for the MURDOCK Multiple Sclerosis Study, a long-term health research project based at the North Carolina Research Campus in Kannapolis. Raleigh Neurology partnered with Duke in July 2014 to help recruit 1,000 people with multiple sclerosis and 100 people with Primary Progressive MS.
Dr. Simon Gregory is principal investigator for the MURDOCK Multiple Sclerosis Study and associate professor at the Duke Molecular Physiology Institute at Duke University School of Medicine. He and his team are working to identify the genetic underpinnings of complex diseases like MS and understand disease development and progression at the molecular level.
While Duke recruits MS patients at several locations in North Carolina, Raleigh Neurology is the only independent enrollment site for the MURDOCK Study and enrolls between six and eight patients per week.
Read more




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Kessler Foundation Study Says Cognitive Fatigue in Multiple Sclerosis Depends on Task Length

January 23, 2015
A study from a team of researchers at the Kessler Foundation provides new findings on multiple sclerosis (MS). According to the study, published in the journal Frontiers in Neurology, cognitive fatigue exhibited by MS patients is related to the length of the task they are involved in.
Fatigue is one of the most reported symptoms of Multiple Sclerosis (MS) with a prevalence estimation ranging from 70 to 90%. Cognitive fatigue can be a result of both cognitive and physical exertion, and usually presents as subjective sensations or objective changes in performance, fatigue, and fatigability.
Treating cognitive fatigue clinically is complicated because there is a poor understanding of the factors contributing to this combination of symptoms.
In their study titled “Subjective cognitive fatigue in MS depends on task length,” Joshua Sandry from the Neuropsychology and Neuroscience Research, Kessler Foundation, and colleagues examined the relationships between subjective and objective cognitive fatigue, information processing domain (PS), working memory (WM) cognitive load and time on a task in 32 patients with Multiple Sclerosis (MS). The results were compared with 24 healthy controls

Continue


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Lack of Exercise More Deadly Than Obesity

By 

Just a 20-minute brisk walk each day can lower odds of early death, researchers add.



Jed Share/Corbis

Just 20 minutes of exercise a day can lower your risk of early death by 30 percent, the study found.





Being sedentary may be twice as deadly as being obese, a new study suggests.
However, even a little exercise -- a brisk 20-minute walk each day, for example -- is enough to reduce the risk of an early death by as much as 30 percent, the British researchers added.
"Efforts to encourage small increases in physical activity in inactive individuals likely have significant health benefits," said lead author Ulf Ekelund, a senior investigator scientist in the Medical Research Council Epidemiology Unit at the University of Cambridge.



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Seeking Support When You Don’t Receive it From Home

By Matt Allen G—January 21, 2015
Whether you were just diagnosed with Multiple Sclerosis or have had MS for years something that doesn’t always change is how the people around you react to your need of support. Some people are very lucky and have family and friends who are actively there to provide support, to take interest in learning about MS, and to do their best to try to really understand what you are going through; to understand the pain you feel that is so difficult to describe. I envy those people. Don’t get me wrong, I have support here at home, but I have never felt like I had the support I wanted. Maybe I have unrealistic expectations? After all, how can we expect the people around us to know exactly what we need when we are down if we never communicate those specific needs?
It’s no secret to those closest to me that communication was never one of my strongest attributes and even though I feel I have greatly strengthened that “skill” over the last few years, I believe my inability to properly communicate has burnt down many bridges keeping me in a world lacking the support I want and need from people. That will change but it takes time; time to reinvent who I am, how people look at me, and what people feel I need. Even though I have come to this realization and am trying to change and better myself, the world spins on; “life” keeps happening. So this problem I am describing? It is still a problem even though I am trying to fix it; I mean, just yesterday I realized I was expecting something from someone whom I never told what I needed… That was not fair of me.
So, I know it’s not healthy but I found it much more simple (at the time) to learn how to deal with my problems and emotions on my own. The problem with this is that I was simply suppressing my emotions; bottling them up inside. But still, even now, when I do try to open up and I don’t receive the reciprocation I was hoping for? It’s very disheartening; I experience a rush of pain and rejection that leads to anger and depression and so many other negative emotions. I have realized though that this is not at all fair to the people around me; to look at them like it’s their fault or that they don’t really care. It would be like me working on a puzzle and realizing I need help finding a specific piece. I go to someone and ask for that piece but don’t describe the piece; the details of what kind of piece I need. How are they to know what kind of piece to bring me? There are just so many possibilities and what are the odds that they can guess what kind of piece I need if I don’t actually communicate it to them? And then to be angry when I don’t receive the piece I need? Not cool…

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A MS Patients' Story: Tax Season 2014: Filing SSDI plus Earned Income and How I Totally Screwed Up 2013 -

By Kim Dolce—January 22, 2015
Like many of you, I have Social Security Disability (SSDI) as my main source of income. I started drawing it in August of 2009, and in February of 2010, I went to the IRS site to file my federal EZ tax return, the form I’d always used each year of my working life.
My only source of income was SSDI and I had no taxes taken out. After plunking in the numbers, a box popped up stating that I had no tax withheld and owed none, so I need not file a tax return—and it booted me off the site.
Pleased by the good news and not a little bewildered, I went to the SSA.gov site and read that people on SSDI can make up to $25,000 per year and not owe federal tax. Confident that the IRS no longer wanted to hear from me, I did not file a tax return from that point on. The T-men had as much as told me I was off the grid for good.
My interpretation of these facts was a bit bone-headed, however, as I was to find out when my dream apartment came available in December of 2014 and the application process began to approve me for tenancy.
Two days before I was to move in to my new apartment, my application was suddenly denied. I indicated that I had some earned income in 2013, but hadn’t filed a tax return. They needed to verify the earned income and couldn’t do so without a tax document. I was stunned and panicked. It was December 29th, I was still living in my mother’s drafty old Victorian house; my upstairs renter took a powder late one night in the middle of the month, stiffing me for the December rent—which I needed to pay the utilities. The movers were set to come on December 31st, New Year’s Eve day. I had nowhere else to go. Having exhausted all the low-income senior communities in my tiny town of Tecumseh (there are only two, and the other one had a waiting list of 25 people), I would have to look in the neighboring town of Adrian, at the notorious senior high-rises or, worse still, section 8 housing where unattended little children were known to ride their bikes up and down the halls of the elderly and disabled wing, and where, as the gossip went, there had been a recent infestation of bed bugs.
Click to Read more    -plus for those earning less than $53K per year, an important link to find at the end of Kim's story


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Early Study Says Stem Cells May Reverse Multiple Sclerosis Disability

By 
Small initial trial showed improvement for people with relapsing-remitting MS



The stem cell treatment was most effective for patients with relapsing-remitting MS.


   A therapy that uses patients' own primitive blood cells may be able to reverse some of the effects of multiple sclerosis, a preliminary study suggests.

The findings, published Tuesday in the Journal of the American Medical Association, had experts cautiously optimistic.

But they also stressed that the study was small -- with around 150 patients -- and the benefits were limited to people who were in the earlier courses of multiple sclerosis (MS).

"This is certainly a positive development," said Bruce Bebo, the executive vice president of research for the National Multiple Sclerosis Society.

There are numerous so-called "disease-modifying" drugs available to treat MS -- a disease in which the immune system mistakenly attacks the protective sheath (called myelin) around fibers in the brain and spine, according to the society. Depending on where the damage is, symptoms include muscle weakness, numbness, vision problems and difficulty with balance and coordination.

But while those drugs can slow the progression of MS, they can't reverse disability, said Dr. Richard Burt, the lead researcher on the new study and chief of immunotherapy and autoimmune diseases at Northwestern University's Feinberg School of Medicine in Chicago.


His team tested a new approach: essentially, "rebooting" the immune system with patients' own blood-forming stem cells -- primitive cells that mature into immune-system fighters.

The researchers removed and stored stem cells from MS patients' blood, then used relatively low-dose chemotherapy drugs to -- as Burt described it -- "turn down" the patients' immune-system activity.

From there, the stem cells were infused back into patients' blood.          

Read More                                                                                      


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Friday, January 23, 2015

Diet affects brain iron levels differently in men and women, study shows -


Foods that affect brain iron

By ELLEN GOLDBAUM

Published January 22, 2015
Robert Zivadinov
“We had hypothesized that there were gender differences beforehand, but we certainly did not expect such a strong gender effect.”
Robert Zivadinov, professor
Department of Neurology
High brain iron levels have been associated with neurological diseases, including multiple sclerosis, Parkinson’s disease and Alzheimer’s disease. Even healthy adults have higher iron concentrations in their brains as they age. But just how environmental factors, including diet, influence iron levels in the brain has not been well understood.
Now, UB researchers have conducted a pilot study of the dietary habits of 190 healthy volunteers and have correlated them with brain iron levels using high-resolution magnetic resonance imaging (MRI) scanning.
The researchers believe it is the first study investigating how diet influences in vivo- measured brain iron levels in healthy individuals.
The paper was published online before print on Jan. 17 in the Journal of the Neurobiology of Aging.
“Among environmental factors that can influence putative iron levels, diet is an attractive target to investigate,” says Robert Zivadinov, the paper’s senior author, professor of neurology in the School of Medicine and Biomedical Sciences, and director of the Department of Neurology’s Buffalo Neuroimaging Analysis Center (BNAC).
Zivadinov cautions that because of the high variability of diet among individuals and even within the same individual, the study’s findings need to be interpreted carefully.
The study reports that brain iron levels appear to be influenced by diet, but those effects vary according to gender.
“We had hypothesized that there were gender differences beforehand, but we certainly did not expect such a strong gender effect,” says Zivadinov, who also is director of MRI at UB’s Clinical and Translational Research Center (CTRC).
- Continue


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Global Multiple Sclerosis Epidemiology and Patient Flow Analysis 2014-2020

DUBLIN--()--Research and Markets  (http://www.researchandmarkets.com/research/8mgsjf/global_multiple) has announced the addition of the "Global Multiple Sclerosis Epidemiology and Patient Flow Analysis - 2015" report to their offering.

“Global Multiple Sclerosis Epidemiology and Patient Flow Analysis - 2015”
This report provides insights into Multiple Sclerosis epidemiology, Multiple Sclerosis diagnosed patients, and Multiple Sclerosis treatment rate for top seven pharmaceutical markets. The study measures key indicators such as prevalence of Multiple Sclerosis derived from epidemiological analysis, percentage of patients diagnosed with Multiple Sclerosis, and percentage of patients treated with Multiple Sclerosis therapy.
The study helps executives estimate Multiple Sclerosis market potential, assess unmet need, develop drug forecasting models, and build population-based health management frameworks. The information presented in this study is used to evaluate market opportunities, effectively identify target patient population, and align marketing decisions.
The report provides estimates and forecasts of Multiple Sclerosis prevalence, Multiple Sclerosis diagnosis rate, and Multiple Sclerosis treatment rate for the period 2014 - 2020. The information is presented by leading geographies including the US, Germany, France, Spain, Italy, UK, and Japan. The study design is based on collection and interpretation of data from registries, scientific journals and literatures, government databases and other secondary sources.
Key Topics Covered:
1. Multiple Sclerosis: Disease Definition
2. Global Multiple Sclerosis Patient Flow
3. Multiple Sclerosis Patient Flow in the US
4. Multiple Sclerosis Patient Flow in Europe
5. Multiple Sclerosis Patient Flow in Germany
6. Multiple Sclerosis Patient Flow in France
7. Multiple Sclerosis Patient Flow in Spain
8. Multiple Sclerosis Patient Flow in Italy
9. Multiple Sclerosis Patient Flow in UK
10. Multiple Sclerosis Patient Flow in Japan
11. Appendix

Contacts

Research and Markets
Laura Wood, Senior Manager
press@researchandmarkets.com
For E.S.T Office Hours Call 1-917-300-0470
For U.S./CAN Toll Free Call 1-800-526-8630
For GMT Office Hours Call +353-1-416-8900
U.S. Fax: 646-607-1907
Fax (outside U.S.): +353-1-481-1716
Sector: Healthcare and Medical Devices
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Sex & MS: Tips for the Bedroom

Keep your sex life exciting, playful, and fun. The key is to take the time to find out what's important to you and your partner.

Know Your Needs

Explore. Your body may feel different than it used to. Get in touch with that, says Rosalind Kalb, PhD, of the National Multiple Sclerosis Society.
Lock the bedroom door, relax, and take 15 minutes to feel every part of your body.
"Figure out what feels good, what doesn't, and what hurts," Kalb says. This isn't about masturbation, although that's good, too. It's about taking stock of what your body feels now.
Share what you've learned. Once you have a sense of what feels good, tell your partner, who may have been nervous or worried about accidentally hurting you.
Reset your relationship. "When you have MS, you and your partner talk a lot about your health," says Cindy Richman of the Multiple Sclerosis Association of America. "You may start to feel more like a patient than a person."
Don't let all the health talk make you less sexual and desirable. To reconnect, set aside times where you agree not to talk about MS.

Be Bold in the Bedroom

Treat your MS as an opportunity to try different things in bed.
Try new positions. Your old standbys, like the missionary position, may be uncomfortable now. Try others.
Use pillows or rolled-up towels to support parts of your body to make you more comfortable. Also try oral sex or using your hands more.
Experiment with sex toys. Try them if you find you need more stimulation than you used to. You can use them alone or with your partner.
Add lubricant. Vaginal dryness is a common symptom of MS. So buy a water-based lubricant and use a lot of it. People tend to use too little, Kalb says.
Redefine sex. Try to focus more on the experience and less on checking off the boxes. Sex doesn't mean you have to have intercourse. You and your partner don't have to climax. You can still have an intimate -- and sexy -- experience.
Prepare. Good sex doesn't have to be spontaneous. Plan ahead. Decide on a day and time. Anticipation might build your excitement.
Choose the time of day when you feel best. For instance, you may have more energy in the morning than at night.


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BREAKING NEWS: Gene vital to central nervous system development found

New York, Jan 23, 2015  - Scientists have identified a gene that helps regulate how well nerves of the central nervous system are insulated.
Healthy insulation is vital for the speedy propagation of nerve cell signals.
The finding, in zebrafish and mice, may have implications for human diseases like multiple sclerosis in which this insulation is lost.
The researchers from Washington University's school of medicine in St Louis focused on a gene called Gpr56 which manufactures a protein of the same name.
Previous work indicated that this gene was likely to be involved in central nervous system development but its specific roles were unclear.
In the new study, they found that without Gpr56, the cells responsible for applying the insulation failed to reproduce themselves sufficiently.
"These cells actually matured too early instead of continuing to replicate as they should have. Consequently, in adulthood, there were not enough mature cells, leaving many axons without insulation," said study's senior author Kelly R. Monk, assistant professor of developmental biology.
Nerve cells send electrical signals along lengthy projections called axons.
These signals travel much faster when the axon is wrapped in myelin, an insulating layer of fats and proteins.
Gpr56 belongs to a large class of cell receptors that are common targets for many commercially available drugs, making the protein attractive for further research.
The investigators pointed out its possible relevance in treating diseases associated with a lack of myelin, with particular interest in multiple sclerosis.
The study appeared in the journal Nature Communications.

Source, click here


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Financial Aid for Animals -- Yes - this is written correctly


YES indeed:  

Financial Aid for Animals


So many of us have Pets, and many with or affected by MS need assistance when paying bills. Especially when our pet (Our friend) also has an illness or handicap.

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These organizations help owners of handicappedpets that cannot afford vet care and rescue organizations and homeless pets.

Handicapped Pets Foundation
The Newly-Formed Handicapped Pets Foundation helps caretakers get the financial support they need to get wheelchairs for their pets. Accepted applicants are posted on the website and receive donations for individuals and organizations. The non-profit has events and fund-raising drives to benefit the animals in need.

American Animal Hospital Association
http://www.aahahelpingpets.org/home/
The heartbreak happens all too often -- a pet owner is unable to afford treatment and their sick or injured companion animal pays the price. If the owner is elderly, disabled or on a fixed income, the cost of care may be too much of a stretch for their pocketbook. Perhaps they have been victimized by crime, property loss or a job layoff and are experiencing a temporary financial hardship ? making it too difficult to afford pet care. And some animals, brought to clinics by Good Samaritans, don't have an owner to pay for treatment. Whatever the situation, the fact remains the same: When sick or injured animals are unable to receive veterinary care, they suffer. Through the AAHA
Helping Pets Fund, veterinary care is possible for sick or injured pets even if they have been abandoned or if their owner is experiencing financial hardship.

Care Credit
www.carecredit.com
CareCredit, the leader in patient/client financing, has helped more than 3 million patients/clients get the treatment or procedures they needed and wanted. With a comprehensive range of plan options, for treatment or procedure fees from $1 to over $25,000, we offer a plan and a low monthly payment to fit comfortably into almost every budget.

Feline Veterinary Emergency Assistance (FVEAP)
http://fveap.org/
The NEED & The HELP: Seniors, People with disabilities, People who have lost their job, Good Samaritans who rescue a cat or kitten - any of these folks may need financial assistance to save a beloved companion."
The Feline Veterinary Emergency Assistance Program is a nonprofit 501 (c)(3) organization that provides financial assistance to cat and kitten caretakers who are unable to afford veterinary services.

IMOM
http://www.imom.org
Mission Statement:
Helping people help pets. To better the lives of sick, injured and abused companion animals. We are dedicated to insure that no companion animal has to be euthanized simply because their caretaker is financially challenged.

The Pet Fund
http://thepetfund.com/
The Pet Fund is a registered 501(c)3 nonprofit association that provides financial assistance to owners of domestic animals who need urgent veterinary care. Often animals are put down or suffer needlessly because their owners cannot afford expensive surgery or emergency vet visits. Companion animal owners must often make the difficult decision to put an animal down or neglect urgent medical needs because of the costs involved. The purpose of the Pet Fund is to work towards a future where decisions about companion animal medical care need never be made on the basis of cost."

Special Needs Dobermans
http://www.doberman911.org
Doberman911.org is a website for Special Needs Dobermans (SND). They are an organization of people with a common goal of helping senior and special needs Dobermans. That need may be financial or it may be only information and/or moral support for the owner of a Doberman with a serious illness or injury. They will also aid in re-homing and fostering senior Dobermans. These Dobermans may be shelter rescues or they may already be much loved companions with a special need. Financial aid may be through donations or through avenues such as online auctions. Every precaution will be taken to assure that the need is real.


RedRover Relief
http://www.redrover.org/relief
RedRover Relief provides financial assistance grants and additional resources so pet owners and rescuers can care for animals who need urgent veterinary care. Visitwww.redrover.org/grants for eligibility requirements and application. RedRover also offers financial assistance for victims of domestic violence and their pets. To learn more about this program, visitwww.redrover.org/domestic.

UK Assistance with Veterinary Bills
http://www.petloversonline.co.uk/financial.htm
Most of us can cope with the financial commitment involved in the day to day care of our pets. However, how many of us come out in a cold sweat when our pet is ill or injured and we know we have to take it to the vet? Most of us are fortunate enough to be able to afford it but, some of us who love our animals dearly cannot. Unfortunately we do not have a PDSA or a RSPCA Centre within our area, but there are a few
charities who may be able to help.

Other Groups Who are Breed or Injury Specific:

Dachshunds Needing IVDD surgery
http://members.rushmore.com/~dds/applyforhelp.htm

Labrador Lifeline
http://www.labradorlifeline.org/application1/fund.html

LabMed: Rx For Rescued Labs
http://www.labmed.org/aid_main.html

In Canada: The Farley Foundation. The Farley Foundation is a charitable organization, founded in 2001, that subsidizes non-elective medical care for pets of seniors receiving the Federal Guaranteed Income Supplement (GIS) and persons with disabilities receiving the Ontario Disability Support Payment (ODSP). Farley funding is both applied for, and disbursed through eligible veterinary practices across Ontario. http://www.fborfw.com/features/ffoundation/

Pet Diabetes - for diabetic animals in need

Pet Samaritan Medical fund - based in Colorado

http://www.aahahelpingpets.org/

Feline Veterinary Emergency - Providing financial assistance to cat and kitten caretakers who are unable to afford veterinary services.

Help-A-Pet

The Pet Fund - Provides financial assistance to owners of domestic animals who need urgent veterinary care.

United Animal Nations - Helps homeless or recently rescued animals suffering from life-threatening conditions that require specific and immediate emergency veterinary care.

UK Assistance with Veterinary Bills

Other Groups Who are Breed or Injury Specific:

Dachshunds Needing IVDD surgery

Special Needs Dobermans

Westie Med - - Westies in need of medical attention is our Mission - to distribute financial aid to injured or ill rescue Westies.



Please contact HandicappedPets.com if you are aware of other agencies that should be included on this list.
For further information click here:


HandicappedPets


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Interim Results from a Clinical Trial of Stem Cell Transplantation for Relapsing-Remitting MS


Interim Results from a Clinical Trial of Stem Cell Transplan

Interim Results from a Clinical Trial of Stem Cell Transplantation for Relapsing-Remitting MS

Results from the first three years of a five-year study of stem cell transplantation combined with high-dose immunotherapy show that more than 78% of people with relapsing-remitting MS had no new disease activity. The final results should help determine whether this will be a safe and effective solution for people with MS.

Find Out More




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Thursday, January 22, 2015

The Positive Gains from my transplant are slipping-bye






Dave basicWritten by Dave Bexfield

Gang, I apologize if my recent writing has lacked its typical carefree effervescence and squish-MS-like-a-bug attitude. Gains from my 2010 stem cell transplant to halt my aggressive multiple sclerosis are slipping. Walking endurance has waned and numbness has lurched back into my limbs like unwelcome zombies (not that zombies are ever welcome). For those of you who read between the blurry lines over the past months and wrote to check in on me, I deeply appreciate those offers of a shoulder.  

The transplant saved my life--I was, and still am, beyond fortunate. For four years it helped me feel almost normal again. And I purposefully took every advantage, living life with my right foot firmly on the accelerator, figuratively and literally. It allowed me to drive again, travel the world again, and even snowboard again. But I knew that I might have to pen this letter to all of you one day.

  There are no regrets. Even though today I am walking noticeably slower than I was a year ago, I am still walking. Even though my numbness has increased, I can still feel. Indeed, I'm still far above baseline, when I had to sit to brush my teeth, struggled to pick up a pint of IPA, and had to ask Laura to clip my nails and button my shirt and drive me everywhere.

 I urge you not to be disappointed. The transplant was a success for a majority of the trial participants and me: no relapses, no new or enhancing lesions, and a reversal of some disability. If I go back on treatment, so be it. A stumble in medical science is never a step backward, it is a stubborn shuffle forward. It gets us a little closer to finding that maddeningly elusive cure for our shared disease. Indeed, the future is squinty bright in MS research. (Speaking of which, have you done your part and registered with the patient database iConquerMS? Consider this a friendly reminder.)

 I am committed to keep dreaming big dreams and reaching for those stars. Please join me. And I don't want to hear any guff about how stars are just massive, luminous spheres of plasma held together by their own gravity and can have temperatures exceeding 50,000 degrees Kelvin, which would be rather detrimental because of MS heat sensitivity and all. Bah, turn on the AC or put on a cooling vest and get on with it. We have to keep reaching. We'll get there. I am certain of it.

 For me, it's time to research and potentially prepare for a Plan F--or more specifically, attempt number six--to slow down this disease. I don't yet know what route I'll take, or if I'll hold to the status quo for the time being, but I do know that quitting is not an option. I'll exhaust the alphabet if I have to. 

Life will forever throw challenges our way, testing our mettle, our fortitude, our resoluteness to persevere. That's just life... life with or without MS. It is how we absorb those challenges--not just physically, but mentally--that reroute our destinies. Never forget, hope still reigns. Tomorrow I celebrate an unforgettable 22 years of being married to Laura. She's my anchor, and I am hers. Always have been. Always will be. 

I've posted a more detailed update of my experience on the forum so this note can reach beyond those who get our newsletter. Be active, stay fit, and keep exploring. I sure as hell intend to! 

Dave Bexfield
Founder, ActiveMSers.org


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UK News - Dos and Don’ts Multiple Sclerosis Guide

Dos and Don’ts Multiple Sclerosis Guide


Posted by Tom Spooner



Despite efforts to spread awareness and educate people about Multiple Sclerosis, there is still an unacceptable amount of misunderstanding, misinformation and stigma surrounding the disease. There are now more than 100,000 with Multiple Sclerosis in the UK but many people still don’t have a basic understanding of the condition.
Our infographic aims to help people who don’t have Multiple Sclerosis to understand the disease including things they should know as well as dos and don’ts. At the same time, it dispels some of the common myths about multiple sclerosis and highlights the realities of living with the disease. Please share it with friends, family and colleagues and help raise awareness.


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iConquerMS – Your Chance to Help Bloody the Beast

written by: The Wheelchair Kamikaze

Okay, my fellow MSers, are you sick of sitting on the sidelines like powerless spectators observing a do or die contest that will determine your very own fate, waiting anxiously for neurologists, researchers, and pharmaceutical companies to ride to the rescue? Are you, like me, sick and tired of being sick and tired, weary of having very little ability to do anything about the situation except listen to the same old same old, held hostage by a status quo that offers more questions than answers? Do you just for once want to pick up a club and give MS a good smash in the kisser, to kick the fiend squarely where the sun don’t shine, to metaphorically extract a pound of flesh even as the disease quite literally attacks your own? Do you want to actively help conquer MS? Well, take note, that chance has arrived, and you need not even get up from your computer to help wage war on our mutual enemy, multiple sclerosis.

https://www.iconquerms.org/



Enter iConquerMS, a new patient driven research initiative that allows those living with MS to participate in a groundbreaking research effort aimed at amassing the most comprehensive database about MS patients and the manifestations of their disease ever created. Through the web based iConquerMS portal (click here) patients can participate in a series of surveys and questionnaires that will soon form the most complete repository of information about the disease and those who suffer from it in existence. Researchers from around the globe will be granted access to this data, a wealth of information that could very well reveal brand new insights about the disease itself and those who suffer from it. In addition, the iConquerMS website provides patients and those who care about them the ability to address researchers directly with questions and suggestions, thereby helping to shape the future of MS research.

But first things first -  what exactly is iConquerMS? The face of iConquerMS is a user-friendly website, iConquerMS.org (click here), designed to allow MSers to easily contribute information about themselves and their disease. The driving idea behind iConquerMS is the concept of Big Data, a pooling of vast amounts of vital information that can reveal patterns and trends that otherwise wouldn’t be detected. Just as the intricate actions of the tides can’t be determined by observing a single drop of water but instead only by studying the oceans themselves, the complexities of multiple sclerosis may very well best be revealed by the pooling of data from tens of thousands of patients. Big Data-enabled MS research may help answer questions such as: what causes the disease and what strategies might prevent it, cure it, or arrest its progression; which treatments work best in which individuals; and what factors affect the progression of the disease.

The initial 18 month funding for iConquerMS has been provided by the Patient Centered Outcomes Research Institute (PCORI), an independent nonprofit organization authorized by Congress in 2010. Tasked with funding research that will provide a chance to overcome the challenges presented by traditional models of medical research, PCORI is working to close the gaps in evidence needed to make the paradigm shifting medical breakthroughs so urgently needed to rid the world of many dread diseases.    - Continue



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