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.
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: firstname.lastname@example.org
My name is Dr Teena Fernandez. I am a GP in North Wales currently undertaking research as part of my Masters in Sports and Exercise Medicine at Nottingham University. During my studies my husband sustained a cervical spine injury resulting in a 2 level anterior cervical discectomy and fusion and we found little advice or evidence on returning to sport following such surgery.
Can you help researchers from the University of Nottingham?
We did not know if he could go dog walking, do martial arts or do manual labour for 2 hours a day? I subsequently undertook research which only identified expert opinion on returning to sport. I have now (with the help of a neurosurgery consultant) decided to find out how people return to sport following 2 level anterior cervical discectomy and fusion.
I plan to undertake a qualitative project interviewing approximately 8-16 participants to find out whether they have returned to at least 2 hours of exercise a day following the surgery. I would like to know whether they developed problems such as neck pain or pain or loss of function of the arms and legs with exercise.
Being a GP, I hope I can interpret the interviews and help people who require advice on getting fit after surgery.
Please have a look at my advert and get in touch if you would like to be involved.
Dr Teena Fernandez
MBBS MRCGP DFFP DRCOG BMEDSCI PGCE
Why does this matter? A word from the director
The role of exercise after surgery in CSM is largely unexplored. However there is much to suggest that it can enhance recovery; indeed this is well demonstrated in animal studies of spinal cord injury, underpins the basis for spinal cord injury rehabilitation centres and is starting to be evidence based in traumatic spinal cord injury. So at Myelopathy.org, we are pleased to support this research study. It should be noted, that this study is not just for CSM and looks in particular at higher performance athletes (exercising more than 2 hours per day), but no doubt this will have some relevance and we look forward to seeing the results. Ben Davies, Director Myelopathy.org
Worried about participating in research?
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.
Cervical spondylosis, more than a pain in the neck?
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.
How was it done?
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.
Do you suffer from headaches or pain and have CSM?
At the moment, we do not have medical investigations which are able to represent accurately the significance of spinal cord injury. For example, you could have two patients with exactly the same MRI changes, one who is without symptoms and the other who is severely affected.
This is a major challenge for researchers, with many exploring new tools to provide better assessment methods.
However, amongst this confusion, age seems to be important as the number of people with symptomatic cord compression increases with age. Moreover, some have shown that age can affect response to surgery.
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.
Risk of acute coronary syndrome in patients with cervical spondylosis
What were the aims of the study?
Various studies in the past have described cervical spondylosis (CS), the degenerative changes in the cervical bones and ligaments contributing to degenerative cervical myelopathy, as associated with increased sympathetic nervous tone.
The sympathetic nervous system plays a role in controlling blood pressure, heart rate and various other aspects of our cardiovascular health. But part of its control structure also lies in close proximity to the cervical spine.
The authors noted that no research had been done to link the above statements, if CS does cause increased sympathetic activity, does this logically follow that CS causes an increased incidence of cardiovascular events?
With this in mind, the aim of the study was to determine if cervical spondylosis increased the risk of cardiovascular health issues, specifically acute coronary syndrome (ACS), which in common terms is a heart attack.
How was the study performed?
All the patients were followed up until they had a diagnosis of ACS, died, or the end of the research period occurred at the end of 2011. After this, the number of ACS events in each group were measured as a rate over the number of “person years”. This being the number of times a diagnosis of ACS was made for every year a patient lived.
In this paper, the incidence of ACS was measured as number of ACS/1000-person years. These were then compared between various groups to obtain a ratio, to determine the relative risk of ACS occurring in a person with CS compared to someone without ACS in a similar state of health.
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What were the main findings?
Looking in more detail at the patients with CS, for those with myelopathy the risk was slightly higher, increasing by 20% but interestingly, it seems treatment of CS has an effect in reducing ACS risk:
- Patients receiving spinal decompression surgery were less likely to have an ACS (27% reduction)
- Patients receiving rehabilitative therapy were less likely to have an ACS (33% reduction)
The statistical difference between the form of treatment for CS and reducing ACS risk was not significant.
How could cervical spondylosis cause acute coronary syndrome?
What can we take from this study?
There are a number of limitations to this study, and the actually increases in risk are relatively small. But it adds to the research of CSM and Cardiovascular disease, and once again shows the far reaching impacts of CSM.
M. Singh, I. Khurana, Z. Kundu, A. Aggarwal, Link of sympathetic activity with cardiovascular risk in patients of cervical spondylosis, Int. J. Clin. Exp. Pathol. 3 (2016) 41e44
M. Singh, I. Khurana, Z.S. Kundu, A. Aggarwal, Galvanic skin response in pa- tients with cervical spondylosis, IJHSR 6 (2016) 148e152.
 N. Marina, A.G. Teschemacher, S. Kasparov, A.V. Gourine, Glia, sympathetic activity and cardiovascular disease, Exp. Physiol. 101 (2016) 565e576,
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