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Thursday, 21 April 2016

Why ME? What makes me so different?


One of my internal questions that has the ability to drive me to distraction is 'Why me?'. So many of my friends regularly catch bugs and infections and get back to their pre-illness lives within a short period of time. I have fabulous friends, many of whom are physically fit, driven professionals who work long
hours and burn the candle at both ends. So what made me different to them? How come Myalgic Encephalomyelitis (M.E) chose to mess around with my life and not theirs?
Let me stress - I would not wish M.E on my worst enemy let alone one of my wonderful friends.
I have lost count of the number of times I have told friends to not push themselves too hard or to not rush back to work too soon in case it causes further repercussions. In most instances, my advice is ignored and they just recover and move on. I think, perhaps, this is the reason many don't understand the nature of M.E. How can it be caused by a virus or injury that anyone around the world could have had? This is why research is needed. There is something in me, whether that is in my DNA, gut or other part of my body, that didn't recover post-virus. 

No tangible link has been established amongst sufferers and so, at the present time, I believe it could happen to anyone, anywhere. So, I will continue advising friends to take it easy and to be kind to themselves because it could happen to anyone.


Sally x

Sunday, 10 April 2016

The 'Others'


From day one of Foggy's creation, I have ensured that his campaigns are positive to ensure maximum engagement with his Followers. My theory is that even people who know nothing about M.E, it's history and current internal politics, will love Foggy and learn whilst having fun. At the moment, there is a trend on social media to highlight the very real, negative points of M.E in the hope that, as with cancer, non-sufferers will see how dreadful the illness is and empathise/sympathise//understand/help create change. However, I strongly believe this is not the best way forward.

The 'Others' refers to people that have not been affected by M.E, whether as a sufferer, carer, relative or friend. I'm giving them that title because of the inclusive bubble we seem to have created around ourselves that excludes everyone else. I agree 100% that forums and networks are very important for sufferers and carers for support and information reasons. Unfortunately, these sites can be so inclusive they do not help to raise awareness externally. Seriously, do you think that someone who wants to learn about M.E will spend longer than 2 seconds reading the latest arguments and social media bickering about what M.E should be called or whether the latest research was a waste of time? Negativity does not lead to engagement.

If we are going to successfully progress forward in terms of awareness and subsequently research funding, We must make M.E as inclusive and accessible as possible. Stressing the basics rather than the intricacies of an already extremely complicated and multifaceted illness will help 'the Others' understand the phenomena that is Myalgic Encephalomyelitis. As a community, we are very good at supporting each other and offering a caring word when desperately needed. However, we seem to be alienating the very people that we need help from whether that is financial or emotional. Many of us can't work and are on benefits. It is a fact that most charitable fundraising projects come from sufferers, carers or our families. We need to widen that circle to end the constant struggle to raise research funding. 

It is bizarre to me that, in the main, the people with the least energy (sufferers) are having to do their own fundraising to pay for research into their illness! We need more of the 'Others' to understand and appreciate that it could happen to them. That M.E is so common, there is a kind of 6 degrees of separation, they WILL know someone who has been struck down with it. Whether that is a relative, friend, work colleague or someone they knew at school. The cause is not known so no preventative measures can be taken ie. diet, lifestyle, drugs. With that in mind, everyone should be concerned that the seriousness is not being addressed by many governments and health authorities. 17 million people worldwide is too big a number to be ignored and misunderstood.

At Foggy's launch back in July 2014, I was the only M.E sufferer in the room. The 'Others' were in the majority. Overall, I have encountered a willingness to learn and empathy.
They all wanted to learn about the illness, since then these lovely people have been immensely supportive and have helped with my fundraising. This is an example of my reasoning. Inclusion of everyone will only lead to progressing forward. Open up and let people in, yes there are doubters and negativity has to be endured from some quarters but on the whole support and a willingness to learn can be experienced too.

It has repeatedly been said to me that donations are low because sufferers don't have much spare cash. It is a fact that the 'Others' made up more than 80% of donations during the last campaign. This, again, stresses my point that these fabulous people should not be excluded from our cause. True, they do not understand 100% of the illness but then does anyone? All of us experience a wide range of different symptoms to varying levels. It is hard for us to understand them let alone someone who only sees the 'invisible illness'.


Sally xxx