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

[Frogger]

I understand where years, nay decades, of anger and frustration comes from - but the pages of it here are helping precisely nobody and nothing.

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

 

[Sunshine3]

I think if I'd been hit with the reality of our situation in my first year of ME I'd have topped myself to be completely honest!
Can we be gentle with the newbies please? Especially those we want to hang around!

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.

 

[Sly Saint]

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

 

[Liv aka Mrs Sowester]

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.

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.

 

[Sunshine3]

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

 

[Barry]

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.

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!

 

[Solstice]

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.

 

[Barry]

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.

 

[Stuart]

I disagree about awareness raising. I think there is an awful lot more awareness raising to be done. The more good programs like this one the better. You never know when another journalist, scientist, politician will have their awareness raised sufficiently to take action. If everyone in the country know what ME was really like, it would be easier to persuade those with power to act differently. And making more of our families, neighbours, friends aware can make a huge difference to our quality of life.

But I understand and share your frustration, too, @ukxmrv, we and our illness have suffered appalling neglect and mismanagement for decades. It is indeed sad that we still need to do awareness raising.



Really good, @Gary Burgess, thank you.



Agreed.

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.