Gary Burgess talking ME/CFS BBC Radio 5 live Wed 1pm

Thanks for being here Gary! And even bigger thank you for getting the word out about ME/CFS. We are captivated by your wit and inspired by your passion for advocacy.

Here is a working link for Gary's BBC5 interview:

http://www.bbc.co.uk/programmes/p05zn3nz

 

Yes!! That's me. I am a newbie and have been suicidal and still sometimes feel like escaping due to the hopelessness of MUS, stigma, no help etc....I have to say Carol Momaghan and Gary have given me hope. I really hope Carol stays on the case.

 

Full write up of his story with photos on BBC :
http://www.bbc.co.uk/programmes/articles/3zwwH9C8fRfGBdQl0c8gVGQ/why-do-we-know-so-little-about-me

 

Between you, me and several hundred close friends, I've been suicidal too at times. I think the majority of us have.
But there really is hope, everyday there is an article, a blog, a program, a research paper or something about ME. There is a momentum now that there wasn't when my POTS hit 8 years ago.
Hang on in there @Sunshine3, I'd suggest hanging your hope onto the momentum of change rather than investing it all on a favourite person, clinic or hypothesis, I find it safer emotionally to do that. That way if one champion stumbles there's always another to take their place.

 

Thanks Liv xxx

 

Absolutely. The snowball is steadily picking up speed down the slope and getting bigger and bigger. Somewhere soon the BPS crowd are no longer going to be able to run away from it!

 

That's only part of the story though, most important is gonna be to find ways to alleviate or cure our disease when it comes to hope.

 

Absolutely. But I think that will get a much bigger boost once the PACE/BPS farce finally gets sorted.

 

I understand the context of what @ukxmrv was saying, we've had awareness raising in the 80s, in the 90s, in the 00s, and now the 10s. At what point do we get beyond the 'awareness raising?'

Every illness can use a bit now and then to get into the public conscience or to get more support from the medical and public policy community, but ME just gets lost in the original conflation of ME with idiopathic fatigue that came out of the CDC's invention of 'cfs' during the Tahoe outbreak.

The persistence of ignoring biomedical data, lack of funding to better follow up on biomedical data, the funding of BPS nonsense and level of commitment to it is Kafkaesque and is going to leave a stain on the medical and scientific community that won't wash off.

Until we can stop grinding our gears on 'fatigue' we will never get any forward movement. Doing so is going to take much more than polite agreement, it certainly didn't for AIDS activists. It is gaslighting to tell us to be both more agreeable (i.e. use our 'inside voices') and then more activist at the same time.

It is why we can't limit our rare chances at having a voice in the public to 'a step at a time,' unless we answer the question posed by the show, it won't have much effect.