Wednesday 22 June 2016

Celebrity M.E./C.F.S Advocacy

Hello,

I have been pondering why M.E doesn't have celebrity advocates like other illnesses do. Every charity has ambassadors that do their utmost to raise the profile of the charity at every given opportunity. I remember when I was doing the last campaign I asked the ME Association if we had one, with the hope they could make an appearance at my awareness talk. I was given a few names but there wasn't anyone with a suitably high profile. In the UK, everyone knows that Martine McCutcheon had M.E. She was a soap star/West End actress before M.E hit. She had to take a few years out due to ill health but is now working hard to resurrect her career. I can understand why she doesn't do lots and lots of M.E publicity events. 1. She probably wants to be known as more than 'the actress that had M.E' and 2. It would involve a lot of extra time and energy which, with a new baby, she just won't have.

As I have repeatedly stated in previous blogs. M.E is a common illness. I simply do not believe that an A or B list celeb hasn't either been struck down with the illness OR that a celeb doesn't have a close relationship with an M.E patient. With this being the case, I wish they would come forward and help us to raise M.E's profile globally. Someone with the pulling power equal to Beyonce, Ellen Degeneres or Rhianna would be perfect. So many people follow them during their careers, M.E would be brought to the attention to a huge mass of people.

Shameful confession time. Anytime I hear of a celeb being 'mysteriously unwell' for a split second I wonder if they have M.E and whether it could be a good thing for our cause. Let me be clear, I wouldn't wish M.E on my worse enemy and wouldn't be rubbing my hands with glee if they got an M.E diagnosis. However, I think this will be the only way that we will ever crack the raising awareness problem. Fans care about their idols....we could use that to our advantage. Cynical and horrible I know...sorry. Whenever a celeb has a cancer diagnosis there is a ripple of sympathy and an increase in donations to cancer charities, the same with Parkinson's Disease (Michael J Fox) and Alzheimers Disease (Billy Connolly). We need that.

There have been many unconfirmed rumours about A lists celebs that may or may not have had M.E. Robbie Williams (from Take That for non-UK people) is supposed to have had it when he took a step back from the limelight. He has never confirmed or denied it. M.E has a stigma and so I think it is completely understandable for him to keep it private if he'd had M.E. He is known as an
energetic, globetrotting showman...doesn't really fit with the image of M.E.

Wouldn't it be great if an A list singer held an awareness concert for thousands of people. OK, sufferers wouldn't be able to attend but family and friends could go and show support. Imagine how much money could be raised in one night? If it is good enough for Elton John and the AIDS charities then it is good enough for us!

Foggy being on stage was on his bucket list. I included it in the hope that someone somewhere would hold a concert in his honour to raise funds. I was dreaming, it didn't happen. Foggy is going to be around for years to come though so maybe...just maybe...it will happen one day!

Love

Sally xxx

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