A message from the director
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.
In this Blog, we speak to Iwan Sadler about the start of the Facebook support group and what the future holds.
The Facebook group started back in early 2015 on the back of Iwan personal myelopathy awareness campaign. Iwan was diagnosed with Cervical Myelopathy at the end of 2014 and felt terribly alone with his diagnosis which was accompanied by very little information.
He started searching the Internet for information. Whatever facts he came across he shared on his Facebook awareness page called Spinal Myelopathy. Within a few months it began taking off and gathering Likes on a regular basis. He then decided to expand his awareness campaign through social media and before long a Twitter account was also gaining followers.
At first Iwan says he didn’t even think of developing a Facebook support group – it just happened on the back of the Facebook Community page. People started asking questions and engaging with each other on the awareness page posts. The main problem was it wasn’t the correct platform for people to discuss personal medical details about themselves.
This prompted Iwan to search for Cervical Myelopathy groups. There was an abundance of canine myelopathy groups but nothing really dedicated to Cervical Myelopathy. So, he launched the Facebook Myelopathy Support group with private settings creating a suitable platform for myelopathy sufferers to engage with each other and discuss their problems.
Iwan’s work coincided with the launch of the myelopathy.org website by Dr Mark Kotter and Dr Ben Davies. It was a bit of being in the right place at the right time. Iwan says he was oblivious of the launch of myelopathy.org until the day he received a message from Dr Ben Davies asking him if he would be happy to share his story Iwan's story on their new website.
At first Iwan felt reluctant. He says: “I didn’t want people to read it and think I had done it out of self-pity. That just wasn’t me. But I also knew this could also be a great opportunity to see the awareness campaign grow.”
After a few days of thinking, and a message from Ben saying that Iwan could put a link for his myelopathy awareness page in the My Story section on myelopathy.org, Iwan finally agreed. He says: “It was the perfect platform to launch the awareness campaign and to reach out to as many people as I possibly could.”
Iwan’s myelopathy awareness campaign really gained momentum and it also increased visitor numbers to the myelopathy.org website. At last people had the information and support they needed – a dedicated website for cervical myelopathy combined with a very active Facebook myelopathy support group.
Iwan was then invited to meet Mark and Ben but unfortunately had to decline the offer due to his worsening symptoms and inability to travel to Cambridge University. However, in 2016 just a few months after surgery, Iwan met up with Ben and Mark and other myelopathy sufferers at the University of Cambridge for the first CSM Day which was a great success.
He says: “It was great finally to meet likeminded people who had the same passion and determination for this important cause alongside other fellow sufferers. At last we had all found someone who would listen to us and answer some of our questions.”
Within a few months of their first meeting and a few discussions on Skype, it was decided to combine the two campaigns. “I think over the moon would be an understatement,” says Iwan. “It was a chance to turn my diagnosis into something positive not just for myself but for all the other sufferers out there.”
In 2016, the myelopathy.org Facebook community and the Spinal Myelopathy awareness campaign came together as Cervical Myelopathy for the launch of the support section at myelopathy.org and is overseen by Iwan. There are now more than 600 + members in the support group and over 1100 Likes on the community page. The numbers are going up daily. “The important factor is that people are now getting the help and support they need and also the information that they require at their fingertips. Hopefully they no longer feel alone like I did when I was first diagnosed,” says Iwan.
His myelopathy means Iwan is not able to sit in front of his laptop for long and some days he can’t do it at all. Fortunately, he now has help from the team of admins and moderators who all suffer from myelopathy and contribute as much as they physically can.
Iwan says: “Within the support group their work is paramount. I’m so grateful for the help they give. I really couldn’t do it without – Jillian, Shirley, Delphine and our newest recruit Margot. I thank you and I’m sure the other members would thank them too.”
There are bigger plans in the pipeline for our myelopathy campaign. For example, we have just launched out Cervical Myelopathy Community at HealthUnlocked and now we are also on Instagram we are forever looking at expanding through social media. We are also looking at providing an offline support group in the not too distant future. 2017 is an exciting time for our overall campaign with so many things in the pipeline ready for development so watch this space and don't forget to signup for our new newsletter coming out in the next following weeks
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