Neighbours.....Foggy met some of the cast 'down under'!

Hello!!

Foggy has had a wonderful time in Victoria, Australia visiting the Neighbours TV set and meeting some of the cast. Sally contacted Fremantle Media at the start of the campaign, to see if they would like to Foggy sit and help highlight the campaign. Dates and schedules were organised and it has all worked out fabulously! Foggy added 10,550 miles to his mile-o-meter, met some lovely people and increased awareness of M.E. across social media. He will always have fond memories of his time 'down under'.

Sally would like to thank Jenny Van Der Werf, Kelly Davis and the cast of Neighbours for helping to promote Foggy's campaign amongst their fans. The enthusiasm and support received has exceeded expectations. Amazing xx

Here are the fab photos!

Foggy is always a hit with lovely ladies!

Anyone who has ever watched Neighbours will recognise this painting!

For anyone who lives on the moon and doesn't know anything about Neighbours here are some links....

https://www.youtube.com/watch?v=qnJ5dWuKYfs

http://tenplay.com.au/channel-eleven/neighbours/about

http://tenplay.com.au/channel-eleven/neighbours/characters

These characters/actors are in Foggy's photos:

http://tenplay.com.au/channel-eleven/neighbours/characters/georgia-brooks

http://tenplay.com.au/channel-eleven/neighbours/characters/karl-kennedy

http://tenplay.com.au/channel-eleven/neighbours/characters/mark-brennan

http://tenplay.com.au/channel-eleven/neighbours/characters/imogen-willis

http://tenplay.com.au/channel-eleven/neighbours/characters/naomi-canning

Foggy has now been posted on to Hawaii....travelling in first class surrounded by bubbles (in a jiffy bag!).

Doggy snogs xxxx

What's In A Name?

Hello!!

Foggy is currently having a wonderful time with the Neighbours on Ramsay Street in Australia and so has allowed Sally to write this blog post. There is big news in the world of M.E. and he thinks Sally should highlight it. So here goes...

Hello,

Last night the Institute of Medicine in the US published a VERY LONG report into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The report was to consider a possible name change, identify characteristics and define how to diagnose the illness.

This is the report:

http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf

In all honesty, I had brain fog last night and insomnia today so don't have the brain power to take in all of the medical language. I have been able to read the summaries though and think it could POSSIBLY be a step in the right direction. It clears up a little bit of the confusion between M.E. and CFS and stresses that it is a real disease and not a psychological syndrome. It is very early days and it is not clear whether the new definitions will be accepted and implemented globally. We will have to wait and see.

It doesn't have a direct positive impact on the suffering of 17 million people, neither does it lessen the severity of symptoms. However, is a massive boost to finally feel that those in the health profession are finally listening. Instead of a very long list of POSSIBLE symptoms required to be diagnosed it has simplified and reduced the list to make a much more definite diagnosis possible. The report says you should have either cognitive problems (brain fog/memory) OR the inability to stay upright for too long with great relief upon laying down, in addition to other symptoms. I have both of these symptoms so at least I know I haven't been misdiagnosed!!

It does frustrate me that so much time, effort and money is spent on classifying the illness, rather than researching what it actually is biologically. To me, it doesn't matter what the name is; the illness would be more credible and accepted if you could definitively explain to a non sufferer what it actually is rather than offering a list of invisible symptoms. (Does that make sense - brain fog today!).

I am going to stick to saying I have M.E. until I am 100% advised otherwise. Systemic Exertion Intolerance Disease (SEID) does sound a less wishy washy than Myalgic Encephalomyelitis (who isn't fed up with hearing M.E? Yes, it's all about me, me, me) and it does kind of say what the illness involves. However, I spoke to someone very close to me about it last night and the first thing he said to me when I told him the new name was 'so you have an excuse to be lazy?' He was joking but it does make me wonder if it will cause more people to think we are playing on the illness to be lazy. WE KNOW WE ARE NOT LAZY!! I had to Google what systemic meant....if I had to then I'm pretty sure non sufferers will not know what it means either. Is that helpful to our cause?

Definition of systemic: http://medical-dictionary.thefreedictionary.com/systemic

Below are some interesting articles about the report:

http://theargusreport.com/iom-wants-mecfm-name-changed-to-systemic-exertion-intolerance-disease-seid/

http://america.aljazeera.com/articles/2015/2/10/institute-of-medicine--calls-for-renaming-chronic-fatigue-syndrome.html

Let's keep our fingers crossed that this is the beginning of great change.

Sally 

Ps. Here is Foggy with Dr Karl Kennedy (Neighbours) in Australia - HOW EXCITING!!!!

One Woman Band!

Hello,

Foggy is having an amazing time sipping cocktails with Uncle Derek and Aunty Pauline in Kerala, soaking up some culture and lounging around in the beautiful sunshine.

Sally has told Foggy he needs to pull his weight and do a little bit of work while he is kicking up his heels so here is his latest blog post.

Foggy finds it hard to understand how M.E. sufferers find the energy needed to do their own fundraising and campaigning. He has been impressed by how many sufferers are writing blogs, undertaking challenges and campaigning to raise funds and awareness for the various M.E. support organisations around the globe. Sally has had to explain to him why it is difficult for non-sufferers to understand and empathise with an invisible illness. There are non-sufferer supporters and campaigners but, in the main, it is down to sufferers to raise funds and awareness. Those with the least amount of energy have to put in time and effort to make others understand.

Foggy is amazed that Sally is able to put as much effort into the campaign as she is currently managing. She spends at least a couple of hours a day (before work, lunchtime and after work) emailing, doing social media, taking photos, recruiting Foggy sitters, trying to fix silly IT problems, checking legal stuff like copyright, snuggling Patch (oops that's not work), networking, making things for Foggy playtime and organising photos over and over again. Foggy knows how exhausted Sally is at the end of her usual working day and this extra work is definitely a test. Foggy can see that Sally's symptoms have worsened slightly and is worried about her. But, she is taking care of herself as much as possible and is determined to keep pushing this campaign until Foggy's mission is complete. In a perfect world, Foggy's HQ would consist of a marketing, legal, IT, publishing, illustration, and finance department. Unfortunately, it doesn't and Sally has become a bit of a one-woman band. 

Foggy has a doggy crush on Doris Day!

Because Myalgic Encephalomyelitis is invisible and misunderstood it would be extremely difficult for non-sufferers to talk knowledgeably about the condition. OK, doctors may know some of the biological effects but do they know what dead legs feel like? Have they ever experienced absolute complete exhaustion when you can't feel your body and you can't get your brain to cooperate? It is only people who experience this dreadful illness first hand who can communicate how life-destroying it is. 

Foggy snogs xxxxx