blogging

Leave a comment Posted on April 26, 2016April 25, 2016 Multiple Sclerosis

Platform MS – how get involved in the Multiple Sclerosis blogging world

Platform MS

A few weeks after I started blogging for the site MSweb.nl, I started receiving comments and emails from different kind of people who have been reading my blogs and said that they finally understood the life of people who live with a MS patient. The blogs where understandable, happy, sometimes sad but mostly honest. Honest about our life with MS. Yes, our life. My wife has MS. And last year (summer of 2015) she got a heavy schub. She couldn’t move the right side of her body and at that moment I realized I had to write about our experiences.

My blogs started getting populair and more people asked for some sort of advice. Two months ago I registered the domain platform.ms and a few days later I started thinking about how I can reach people with stories about people who live with MS. I asked some friends around me (tiepiesnicole.nl, @BeertjeBrult) if they were interested in writing for Platform MS. They were thrilled! YEAH! We wanna write our stories.

And so the first week of www.platform.ms is a fact. Now its time for new authors, contributors, bloggers or other people who have a story to share. A story about Multiple Sclerosis. A story which can help other people identify themselves. A story to help people!

I hope to see you all soon!

Thanks!

Floris (Founder & Creator Platform MS)

3 Comments Posted on March 20, 2015March 20, 2015 Arthritis, Fibromyalgia

Fibromyalgia and arthritis blogging. What ever happened to the fibro blogging community?

Yes I know an odd question for a blog which covers fibromyalgia and arthritis in some depth.

But let me explain (and ask for your help).

Fibromyalgia blogging

When the wonderful (and wacky) world of weblogging came into my life about 10 years ago it seemed that we could not move for citizen journalists writing on any and every subject that took their fancy. I was told about one blog which covered the history of the headgear of Roman Catholic priests before the Second Vatican Council.

But those days seem to be over especially in the whole area of healthcare and fibro in particular. To some extent this is due to the rise of social media like Twitter. Though I’m not certain how much insight you can get from 140 characters. But it does seem that there are far fewer blogs active than there were five years ago.

The reason I started thinking about this was by accident really.

A couple of days ago a lady called Catherine Manning dropped a link to her excellent blog about fibromyalgia and arthritis called “Old before my Time. You can check it out by clicking the link here.

Now I used to read Ms Manning’s blog on a very regular basis but realised that I’d not done so in a couple of years. Indeed we even published a cross post from her a few years ago. Indeed that applied to a lot of the blogs that I used to follow.

Which brings me to the reason for this post. What should I be reading online and where can I find it?

Please feel free to share the blogs you read (or even better the blogs you write) in the comments box below.

It will give both my readers and myself a great opportunity to find out what is going on out there.

And maybe it will help to prime the pump of the arthritis and fibromyalgia blogging communities.

Thanks very much in advance!

Leave a comment Posted on December 17, 2014December 17, 2014 Autism, Patient Talk, Research

Autism and Blogging – Please help a student at Gothenburg University with some research.

Gothenburg University

Autism and blogging is, as my regulars will know, a subject close to my heart. Indeed one of the first areas I covered when I started this blog was the disappearance of many Autism bloggers.

So I am very interested in supporting Ekaterina Boytsova, a student at Gothenburg University, who is conducting some research in the area.

Boytsova writes “As a master student in Gothenburg University (Sweden) I am now conducting a research dedicated to autism and blogging and their communication experiences transmitted via posting. It is not much written about narrative practices of people with autism especially in the dimension of Internet. That is why I find it important to convey a message to the scientific community about the necessity and advantages of computer-mediated interaction via blogs and social networks. I believe those who already benefit from it will stand for wider implementation of information and communication technology tools in an educational context as well.

That is why I kindly ask a person with autism keeping his/her blog to take part in my survey which is confidential. However, if you want your blog to be referred to, it is also possible to put your name and the link in the reference list.

If you have any further question on participation or want to see the support letter from the supervisor, please contact me gusboyek@student.gu.se

If you have any queries please feel free to mention them in the comments section and I will ask Ms Boytsova to respond.

4 Comments Posted on July 11, 2014July 11, 2014 Patient Talk

Healthcare Bloggers – we would love to promote your healthcare blog.

Healthcare blogging

Do you run a blog which at least in part looks at healthcare?

It could be from the point of view of a person with an acute or chronic medical condition. Or a caregiver. Or a healthcare professional. Or just somebody with some great ideas about the future of healthcare.

One of the aims of this blog is to promote awareness of different conditions and treatments. So it is kinda what we do!

We would love it if you would like to use this blog to showcase your blog. You can tell people about your interests and your story.

This will not just improve you long term search optimisation but in the short term get you some new readers as well. And may be customers if you blog is commercial.

Are you interested. There is no charge and as long as the blog post is fine from a technical point of view we would be happy to give you editorial freedom.

If your interested please feel free to get in touch by email us at patienttalkblog@gmail.com or leaving a link below.

Thanks very much in advance.

Leave a comment Posted on October 16, 2013October 16, 2013 Patient Talk

Chronic Fatigue Syndrome and Fibromyalgia Blog: Check out our guest post from Bea Scherfel where she tells about her diagnosis and her Fibro blog

Fibromyalgia

Welcome to the latest in our series of guest blogs. Today Bea Scherfel introduces us to her blog about her diagnosis of Chronic Fatigue Syndrome and Fibromyalgia. Please do check out her blog at http://beascherfel.blogspot.com.

If you have a blog you would like us to promote please get in touch by emailing us at patienttalkblog@gmail.com

“I am 34 Years Old. I suffered with a lot of “Symptoms” for years. About two years ago, I was able to finally get a diagnosis of “Chronic Fatigue Syndrome (CFS)”. I was on different medicines for Migraines, Depression, Anxiety, Energy….Test result after test result came back “Negative” and, in January 2013 I was finally diagnosed with “Fibromyalgia” as well. I don’t say “Finally” because these illnesses are fun to have…or because we love the symptoms…”Finally” is said out of relief of knowing “There Is Something Wrong”…so many years of seeing doctor after doctor and hearing doctor after doctor tell you “You’re lazy…You’re fat…You’re not a baby…” Yes, I had doctors say each and every one of those to me. So, yes, it was “Finally Nice to Have a Diagnosis and Know That I WASN’T JUST Lazy or Fat or Think I Was a Baby”…The pain, fatigue, lack of coordination, not having hands, feet, legs, and arms do what you want them to, memory problems, and the mental affect that come with these “Chronic Illnesses”, you could never understand until you go through them. While I have finally been able to find relief, I still have bad days. I recently started a blog which has helped me a lot “Mentally”…I may write on articles I’ve read, my own experiences, the conditions themselves, or just how I’m feeling at the moment. I am open to Support, Comments, & Suggestions… http://beascherfel.blogspot.com”