info@myelopathy.org

A group from Japan have been experimenting using a preclinical (animal) model, to investigate how spinal cords of different ages react to the same compression force.  Using a technique called Finite Element Method, more typically used in engineering, they have shown that in an older spinal cord the same amount of compression causes a much higher stress to the spinal cord tissue, than in a younger spinal cord.  This was the same for sudden or slow compressive forces. 

​ Of course this experiment has not been conducted on human spinal cords, but the findings are in keeping with a wider experience of aging and CSM and is a further reminder of the need for more sophisticated tools to represent the extent of spinal cord injury in CSM.  

1. Okazaki et al. Age‐related changes of the spinal cord: A biomechanical study. Experimental and Therapeutic Medicine 2018

​Concerns have recently been raised with regards the legitimacy of the Health Surveys hosted by Myelopathy.org and I would like to address these directly.
 
As you are only too aware, Myelopathy is a condition which faces a number of significant challenges including lifelong disability, widespread misunderstanding and under-recognition, and a lack of clear information or support.   Myelopathy.org was founded to address these issues and become a rallying point for change. 
 
We see research as an important part of delivering change and support projects that can advance our understanding.  As the largest ever Myelopathy community, your shared experiences have a lot to offer researchers, and therefore health surveys have been a prominent part of our research arm.  So far, more than 2000 people have shared their experiences, making these some of the largest ever studies in Myelopathy.  That data is still being processed, and we look forward to seeing the results soon, but this in itself is a testament to what we can achieve together.
 
As an organisation we recognise the power of this community and are committed to its responsible management.  In this respect, all research associations and projects have been and are expected to meet our ethical standards.  This includes adhering to our code of conduct, providing appropriate regulatory approval and practicing safe management of personal data.  All proposed surveys are first piloted and approved internally.
 
Looking through our research section today, I can see that this oversight is not as explicit as it should be, and we will be introducing clearer documentation to correct this.
 
We are a very young organisation, developing and learning as we go along but in a short time we have made great in roads; I remember when we first launched, canine myelopathy was the prominent feature of google search results, but now our myelopathy has come to the forefront.    
 
There is still a long way to go, but it will be together that we can drive change and not as individuals.  The internet has provided a platform for us to come together, but we must remember that it can also have the potential to divide us: both as an organisation and as individual members we all must act responsibly.  In that regard, if you feel any of our actions or the actions of our members questionable, please get in touch directly.
 
Thank you for your ongoing support.
 
 
Benjamin Davies
Director Myelopathy.org  

With this in mind, a group at the China Medical University wanted to determine if there was an association between cervical spondylosis and the likelihood of suffering from migraines. ​

​The group used a health insurance research database in Taiwan.  From this database,  a group patients with and without cervical spondylosis were selected.  The group without spondylosis were matched, such that they had similarly ages, genders and presence of other illnesses such as diabetes.  Over the next 10 years, between 2000-2010, the patients who developed migraine were noted. At the end of the study, the group looked at the relative risk of getting migraines and compared them between the groups.

​The group of Spondylosis sufferers numbered at 27,000, compared to 111,000 without spondylosis. When they looked at the rate of people acquiring migraines each year, they found that out of those with Spondylosis, 5.16 people out of 1000 per year acquired migraine, compared to 2.09 per 1000 people per year in people without spondylosis. When they looked at the risk of getting migraine, using a statistical method known as “hazard ratios”, which compares the relative risk of getting a migraine between two groups, it was found that comparing patients with and without spondylosis patients gave a risk of 2.03. This means that people with Spondylosis are twice as likely to develop migraines as those without. When looking at the data more closely, the researchers found that this risk was further increased in patients with myelopathy and spondylosis as opposed to spondylosis patients with no myelopathy.  As expected, they also found that women and younger individuals were more likely to develop migraines, a well described association.

​Although headache has not been considered a ‘classical’ feature of neck disorders, it has been proposed for many decades that neck disorders can cause headaches.  This led to the creation of a condition called ‘Cervicogenic’ Headache (literally ‘neck generated headache’).  For some professionals this remains a controversial condition, as how a neck condition can cause a headache remains unclear.  The proposed mechanism is based on something called ‘sensitization’, a well described pain process by which the regular perception of pain can alter the ‘wiring’ of the brain and spinal cord, make them more sensitive: so what once felt like a tickle, could become more like a stab.  For Cervciogenic headaches, the theory is the neck pain from spondylosis is the regular pain, and because the pain pathways from the neck are shared with some of those of the head, these wires can cross and lead to headaches.  This has previously been discussed by Dr Lavin, Neurologist for Myelopathy.org, including an alternative theory related to altered blood flow.  

​This study is part of a number of recent articles helping to shine the spotlight on headaches and CSM.  Whilst it cannot show exactly why it happens, the association is becoming harder to ignore and makes it less likely to be simply a coincidence.    Hopefully these studies will help to raise the profile of headaches in CSM, to trigger the research necessary to further understanding and develop treatments – watch this space!
 
In the meantime, some small things that can minimize your risk of migraine include: remain well hydrated, reducing your caffeine intake (although some people find caffeine helpful), as well as ensuring a regular sleeping habit. 

Myelopathy.org ensures all affiliated research meets UK Research Standards.  A useful video has been prepared by  Connected Health Cities and The Farr Institute to provide an overview of how health research is conducted and overseen in the UK, including how your data is looked after and used.  If you have any further questions or concerns, please get in touch. 

By Delphine Houlton 
Our Facebook Myelopathy Support group, founded by Iwan Sadler, now has more than 1,000 members worldwide.
A great success story which is set to grow as awareness of Degenerative Cervical Myelopathy (DCM) increases. 
There is little doubt that social media is revolutionizing health care. A US study by Pricewaterhouse Cooper in 2012 showed that one third of US consumers use social space as a natural habitat for health discussions. Meanwhile a 2010 report by the Pew Internet and American Life Project showed one half of e-patients living with chronic diseases take advantage of user generated information.
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Using this research and more, Pius Boachie writing for http://www.adweek.com/digital/ demonstrates the importance of Facebook groups for people with health issues sharing experiences, offering support and raising awareness and funds.
Social media has also given patients opportunities to vent their frustrations and anger as well as following up issues keeping healthcare providers on their toes.
But it is not just of benefit to the patients. Pius Boachie claims 88% of doctors use social media to research pharmaceutical, biotech and medical devices, and 60% of doctors say social media improves the quality of care delivered to patients.
However, at Myelopathy Support we are facing a challenge and one that not only Iwan has noticed. Our Facebook group has attracted many more women than men. In fact, 76.7% of Myelopathy Support members are women and just 23.2% men!
The specialists tell us that DCM does not discriminate between the sexes, so what is going on?
According to research by Statista, women have been leading the way on the major social media platforms, such as Facebook, for a long time but the gap is narrowing. Now the USA has 230 million Facebook users of which 52% are women and 48% are men. 
So, men are aware of Facebook and interacting but there is a possibility they are using it differently. At least this is an argument presented in www.socialmediatoday.com in 2016.
The authors say research reveals men are more likely to use social media to seek information or new relationships while women use platforms such as Facebook to connect with people and nurture existing relationships. 
Women are more likely to share personal issues while men prefer more abstract topics. On a more negative note, men were much more commonly trolling on social media or engaging in aggressive and even abusive language. In conclusion, they accept that men and women communicate differently.
This sort of argument can be compelling along the lines of the popular Men are from Mars, Women are from Venus theses. I’m not a huge fan not least because I favour nurture over nature and see most styles of communications as culturally constructed with culture very clearly an ongoing process – a verb and not a noun.
Irrespective of my preferences, we do face the challenge of attracting more men to join and to benefit from the information, support and expertise available at Myelopathy Support on Facebook.
Should we be doing more on YouTube (54% male users) who spend, on average, twice as much time as women do on the site per week? Should we signpost the vast amount of detailed information available at Myelopathy Support more clearly? Should we run an invite-a-man initiative or offer a prize to the 500th man to sign up?
All suggestions gratefully received!  Email: info@myelopathy.org

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Here are a few helpful things to get you started. 
Firstly  you need to  go  the Social Security Administration page. You can apply online, or have the forms sent to your home.  

​Social Security Benefits (SSI)
As far as Social Security benefits, SSI is a set disability amount which is awarded for those who have not worked enough years or haven’t paid enough social security tax into the system. For example, the maximum amount right now is $750/monthly. SSDI benefits are disability benefits awarded based on wages over the years and paid into Social Security.  You could range anywhere from a couple hundred to a couple thousand dollars monthly. Both benefits are issued through the social security administration. 

You need to be deemed disabled for an expected period of at least 12 months. For disability, benefits, especially SSI, most applicants are denied the first time. That’s typically when one obtains a lawyer to handle the appeal. It just seems to be common practice.  It can take months to finally get approved.  Obviously depending on the level of severity, but  it can take anywhere from 6 months to a little over a year. 

Medical Coverage
As far as medical coverage, there are programs through public welfare and types or medical coverage available associated specifically with disability. One is directly related to SSI recipients, one is disability clients with no income/awaiting benefits, there is one for those who work but fall under certain income limits, one for those receiving SSDI who fall under certain income limits, and for those who receive SSDI and receive Medicare part B through social security – if they make too much to qualify for the welfare medicare, there’s another income limit to see if welfare will at least pay their Medicare B monthly premium amount, so they would at least have that premium amount back in their pockets in the SSDI check.  All of those types of medical are applied for through Dept. Of Human Services /formerly Dept. Of Public welfare. 

Cash Assistance
​ If anyone in the US is looking for cash assistance while awaiting disability, they can also apply through Dept Human Services.   For example, the guidelines to qualify for cash assistance benefits is that you have to have care/control of a minor child. So a parent/parents with custody.  The amounts are very low though, right now, if a parent of 2 applies for cash assistance, and has zero income, the maximum grant amount monthly for that 3 person household is only $403. Better than nothing but clearly doesn’t touch the bills. There are job search requirements with this program. But if you are disabled, you have a form completed by your physician and are waived from those requirements. We also have what is called a DAP- Disability Advocate Program, and they can help individuals seeking SSI throughout the process.

Each state has different programs to help the disabled offset costs. 
Some states have fuel assistance. Every year , a household gets a certain amount of money paid to their heat supplier for heating through the winter. 
Most disabled people , if qualified can get SNAP, which is the food stamp program. 

If you’ve got young children under the age of 5 , there is the WIC program which delivers food to low income mothers. 
If you are disabled, and get SSDI, your children get a small disability check also. That lasts until they are 18, or have graduated from high school. 
Most states have food banks, if you need food please use them. 
Churches also have programs for food, the elderly, and the disabled. Ask your pastor for any information or programs that could help your family. 

Helpful links: 
SSA.GOV 
Disability Benefit Centre 
Information kindly collated and presented by Margot Miller and Melissa Rodriguez 
If you have any relevant information on the benefit  system  for the USA and would like to see it featured please get in touch: info@myelopathy.org 

All this information  is now available at www.myelopathy.org/disability-benefit-advice-usa.html
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