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Monday, 9 October 2017

M.E Online Community

Morning,

Before creating ME Foggy Dog I was clueless about the illness, despite being a sufferer myself. After 3 years of tests and being given the run-around, I was given the label I had been seeking...I finally knew what was wrong with me!!  A locum had been so blase about the illness that I didn't appreciate the seriousness of the diagnosis. I was told there was no treatment apart from the therapy sessions I was being referred for (CBT in my case). My naive, brain-fogged brain assumed that as there was no major treatment, it couldn't be a major illness....  So for the next 4 years, I struggled on. Desperate for anyone to realise that I wasn't just a little bit sleepy. Every month or so, a new symptom would appear. Every doctors appointment concluded with 'just put it down to your Chronic Fatigue Syndrome (Grrrrr)).

The idea for Foggy came about so randomly back in 2014. It only took a month to set up ME Foggy Dog. Time from the initial idea to the launch in a local cafe went by in a flash! I had no idea what was ahead but was braced for the adventure. I knew Foggy would be driven by social media but ha
d absolutely no idea that an online ME community already existed. I also didn't know it had its own hashtag! (#mecfs) I wish I had known about the community years earlier, I certainly would have benefited from the help, advice and support it offers.

This past week, I have met five mild sufferers who don't 'do' social media. They had never heard of Foggy, didn't know there was charity support available, and didn't know an online M.E community existed. These people all told me they felt forgotten about and isolated. I encouraged them to embrace social media as it offers much needed love and support. Three of them didn't know the difference between mild, moderate and severe M.E. That worried me. They simply called their condition chronic. It shows that M.E sufferers aren't told about their own condition by doctors, we all have to self-educate. Four of the people I met this week didn't know about pacing. Their GP had never mentioned therapy to them. Weirdly, we are always told not to Google diagnose, but with M.E it's the only way to find out what the heck is going on with our bodies. It is also weird that doctors are themselves looking at INACCURATE information online when dealing with ME/CFS patients.

There are many 'mild' M.E sufferers out there that have just got on with life (with great difficulty), and do what they can to get stuff done whilst feeling isolated and forgotten. I know this because that was me, I had no clue that there were 17 million people with my condition, all of us struggling with life; whatever the severity of our M.E symptoms. 

I am so thankful that I had a creative brain cell that was functioning normally back in 2014. I am proud to be able to raise awareness for our community and to bring us out into the light. 

Love

Sally xx
and Foggy OBVIOUSLY xxxx


2 comments:

  1. You and Foggy have helped me understand what my daughter is going through but she is no longer on social media because of all the negative comments her so-called friends used to post about her.

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  2. You have definitely been on a journey! I for one am very grateful for the work you are doing, and for the friendship that developed as a result. You help me feel less forgotten. God bless you sweetie ❤️.
    Kristina

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