2017 ME/CFS Awareness Day Media Coverage (post links here)

[Yogi]

Ben MacPherson MSP

https://twitter.com/i/web/status/863053490070966272

Thanks @emsho for the your Millions Missing campaign. It was an amazing success!!!

 

[AndyPR]

Celtic legend Davie Provan tells ME sufferers: Never give up

Imagine you’re a 29-year-old footballer, playing in front of thousands of adoring fans every week, at the peak of your powers, getting paid well to do the job you love – then suddenly you’re struck down with a mystery condition and it all ends – leaving you not only unable to play but unable to get out of bed. That was the fate endured by Celtic and Scotland star Davie Provan back in the day when players didn’t have to wear shin pads and goalkeepers stooped to pick up a back pass.

Provan, who was eventually diagnosed with Myalgic Encephalomyelitis (ME) during the 1985/86 season, spoke at length to Scotland on Sunday about the devastating condition ahead of the Millions Missing protest to raise awareness of ME in Scotland, which took place outside Holyrood on Friday. The 61-year-old, who is a regular football pundit on Sky Sports, said he was “lucky” that he never suffered the stigma of being told the illness was “in his head” like so many others who have the condition.

Provan said: “I was both lucky and unlucky. I was lucky in that I was playing professional football at the time, so, given how enjoyable that profession is, I don’t think anyone doubted there was something wrong with me. A lot of people who are struck down with ME have a problem getting acceptance that they are actually ill – they can be accused of being malingerers or work-shy, which is not the case. “It’s difficult for the ME sufferer because they look no different from everyone else – if you’ve got a broken arm, you’ve got a stookie on your arm or if you split your head you’ve got stitches in your head – [with ME] you’ve got nothing tangible to prove that you’re unwell. ME is different – there is no obvious physical sign – the symptoms are so wide and varied that it’s difficult at times for clinicians to pin it down and therefore diagnose accurately.

I was lucky in the sense I was playing for Celtic and nobody in the club doubted me. I was unlucky in that there was no real diagnostic test at that time to prove it was actually an organic illness.

http://www.scotsman.com/news/health...an-tells-me-sufferers-never-give-up-1-4445047

 

[slysaint]

 

[AndyPR]

Who knew, we were all wasting our time apparently...

May 12 is, unintentionally, the International Day of M.E. UNawareness. Or, the International Day of Conflating Myalgic Encephalomyelitis* with 8 other diseases so people understand them all less.

May 12 (signified by the blue ribbon) is not a day for M.E. awareness. It is a day when the very damaging conflation of the primarily neurological and secondarily cardiac/cardiovascular illness Myalgic Encephalomyelitis with various fatiguing and catch-all/ help-none diagnoses is exacerbated. This undermines the cause of advocating for M.E. to be treated as the well studied, distinct disease that it is (not at all like 'CFS' or FMS). It is a *terrible* day for trying to help those with M.E.

In light of this, the late HFME founder, Jodi Bassett Hfme, designed some grey ribbons for #ME. The blue 'ME/CFS' awareness ribbon is not part of M.E. advocacy.

M.E. is NOT 'CFS' nor 'ME/CFS', CFIDS, SEID etc. May 12 is NOT a day for #MEawareness! This is not an #MEAwarenessMonth!

*WHO ICD-10 G93.3 http://www.hfme.org/whatisme.htm

https://www.facebook.com/HummingbirdsFoundationforME/posts/1710424112307203

 

[Yogi]

Scotland on Sunday:Celtic legend Davie Provan tells ME sufferers: Never give up

https://twitter.com/i/web/status/863756803548618752

RT to thank him and leave comments.

Read more at: http://www.scotsman.com/news/health...an-tells-me-sufferers-never-give-up-1-4445047

Again by Kevan Christie

Imagine you’re a 29-year-old footballer, playing in front of thousands of adoring fans every week, at the peak of your powers, getting paid well to do the job you love – then suddenly you’re struck down with a mystery condition and it all ends – leaving you not only unable to play but unable to get out of bed. That was the fate endured by Celtic and Scotland star Davie Provan back in the day when players didn’t have to wear shin pads and goalkeepers stooped to pick up a back pass.

 

[Barry53]

Davie Provan:-

“My illness was definitely triggered by a virus – I had gastric flu and had lost quite a bit of weight. I had it for about four or five days, continually having sickness and diarrhoea, plus I lost a bit of weight. I made the mistake of continuing to train to try and keep my fitness up. Nowadays, the clubs would take a blood sample, measure your T-cells, and you would rest until your blood cells were at such a level that it would be safe for you to go back to training.

“Those days we didn’t have that level of science, so I was out doing laps of the track when I should have been resting and I think as a result of that the ME has kicked in for some reason.

“I still read some medical advice to ME people to do exercise, and certainly from my point of view that is the worst possible thing that anyone could tell me to do.”

[My bold]

He is still a star!

 

[RivkaRivka]

Hi all, I got a piece published in Ms. magazine about ME. For some reason, the comments are not going thru moderation, but I hope they will soon. So if you can comment, that would be great.

http://msmagazine.com/blog/2017/05/10/mothers-day-fighting-womens-health-equality/

This Mother’s Day, We’re Fighting For Women’s Health Equality
"For decades, my mom and I have been a dynamic duo using the arts to creatively fight for women’s rights. And now we are using the arts to fight for my life..."

 

[RivkaRivka]

Hi again. I also got another essay published on ProHealth about how we just got a Massachusetts State Proclamation for ME Awareness Day.

http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=30300

"Frustrated with the lack of movement on the national level to help people with ME (Myalgic Encephalomyelitis), also known as ME/CFS, many advocates are focusing more on the city and state level.

Specifically, there has been a push to secure city and state proclamations or resolutions for ME awareness, as well as an effort to "light up" city halls in blue. We see these as a smart strategy for raising local awareness about this debilitating disease. The list of proclamations that have already been secured is found here.

This year, inspired by the work of earlier activists, as well as the 2017 national advocacy effort co-led by Solve ME/CFS Initiative and #MEAction, more ME advocates are using these proclamation initiatives to leverage as much as they can out of May 12th, International ME Awareness Day."

And the essay goes on from there.

 

[Yogi]

https://twitter.com/i/web/status/864875998101336068

 

[Orla]

Article in a local paper with a local sufferer (not me) http://connachttribune.ie/sufferer-outlines-reality-debilitating-illness-800/

This followed the press release going in from the Irish ME/CFS Association which mentioned the upcoming local meeting and that sufferers were available for interview.

I am local and also forwarded on the press release and highlighted the Galway meeting. Sometimes an extra nudge from a local is good and there is a chance they will pay more attention if someone locally contacts them. I don't know whether this was a factor or not in this particular case, but it does seem to help in general if a local person contacts the media.

I was also interviewed on 2 local radio stations (Galway Bay FM, and Flirt FM), and there was a piece in another local paper (no weblink for that one though).