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

This is why I am so glad you are here with us Jonathan, and so glad you are dedicated to fighting the cause for PwME. Very well said.

 

I agree. To my mind she spend most of her very brief time slot trying not to upset AfME, Holgate and friends. In the process she has done herself no favours with everyone else.

I didn't think she was anything like as useful and helpful as she could have been. She needs to openly decide which side of the fence she wants to be on.

 

I am relatively new to all this BS but really, is there ever a day we get up to some good news. Sounds to me like Julia Newton is lacking back bone, she could have done alot today but she didn't, she played it safe. Opportunity wasted.

 

Additional transcript of the Julia newto q

Q. What Is the road block here......

A. What it needs is researchers, clinicians and policy makers to come together....

This condition is Associated with quite a considerable history, we heard you describe it as yuppie flu & there is a lot of preconceptions about this condition which very much influence our ability to move forward.

The patients q rightly and their families & the patient groups are very angry about the history and as a result there is this dichotomy between clinicians, researchers and patients who often get quite angry with each other which means that as a field we are not united.& Because of that, quite reasonably, policy makers and funders, will look at this as a field and say, "well, you know, I have a limited pot of miney, I have limited influence and therefore I have to choose where to put my money". Then it's much easier, in some ways, to put my money into cancer, children, heart disease when resources are limited"

There's more but I'm too weak

 

It's a huge problem that the people who might want to speak out, daren't speak out, for fear, presumably, of losing their funding. I'd like to see other retired UK medical scientists like yourself, Jonathan, writing open letters and articles about PACE, and the use of open-label methods with subjective measures. No one seems to be paying attention to the terrible damage that psychiatry is doing to patients, and patients themselves are powerless to stop it.

 

While we are, quite rightly, pitching in with what we feel could have been better, I just had to remind myself what was achieved today.

One hour plus, of a national, mainstream radio show that reaches millions, of pro-patient talk about ME, and how ME has been let down by the system. We had a number of advocates who spoke well and in a relatable way, as well as a researcher who, attempting to sit on the fence aside, clearly said that she had discovered biological abnormalities. And, importantly, there was no representative for the other side.

Was it perfect? No, how could it be? But in my opinion it's another sign that things are shifting our way. As quickly as we'd like? Again, no, how could it be? But I'll take signs of progress over no signs at all.

ETA: Question mark instead of full stop.

 

42 min long segment from the first hour of the program (I'm assuming they cut out the news, travel, weather etc ) - http://www.bbc.co.uk/programmes/p05zn3nz

 

I'm not sure I agree with that I copied the beginning out too. She doesn't say I blame patients but all the sentences, there's more before and after that quote, are that patients anger , refusal to unite and infighting is blocking progress. I hope a full transcript comes up. I have done a bit of it.


Additional transcript of the Julia newto q

Q. What Is the road block here......

A. What it needs is researchers, clinicians and policy makers to come together....

This condition is Associated with quite a considerable history, we heard you describe it as yuppie flu & there is a lot of preconceptions about this condition which very much influence our ability to move forward.

The patients q rightly and their families & the patient groups are very angry about the history and as a result there is this dichotomy between clinicians, researchers and patients who often get quite angry with each other which means that as a field we are not united.& Because of that, quite reasonably as a field, policy makers and funders, will look at this as a field and say, "well, you know, I have a limited pot of money, I have limited influence and therefore I have to choose where to put my money". Then it's much easier, in some ways, to put my money into cancer, children, heart disease when resources are limited"

There's more but I'm too weak



Cinders66, 5 minutes agoEditDeleteReportBookmark
#64+ MultiquoteReply

 

Great. A full transcript would be useful. My typing skills aren't great and I don't really like listening to the radio. Don't handle noise very well.

If you find that she has outright said that, fair enough. I think we have to be very careful about accusing her about saying something unless she actually said it.

That would just make us look like angry, irrational patients. We can't afford that.

Eta - sorry @Cinders66 - somehow didn't see your last post with the transcript info. A neighbour has decided to start paying very loud music in his shed??? In sub zero temps...

Do I like what she says and how she says it? No.

Do I think she could have said more or done it differently? Yes.

Could it be interpreted as patient blaming? Possibly.

Did she actually blame patients. No, not that I heard.

 

I will copy the last bit later then people can make up their minds. It's on,y a two minute section. Someone more able might do the rest. I'm not into making unfair accusations I'm saying what I felt the impression was although some of the wording, phrasing was vague. I'm not irrational I hope but don't feel it unfair to comment in a critical way if someone had an radio opportunity and it went a way that wasn't great, despite the helpful intentions to participate .

 

But even putting the best possible slant on what she did say - was it actually true. Who are these funders who decided to put their money into cancer and children instead?

It certainly wasn't the MRC who loaded their committe with Psych supporters. The Linbury trust who funded the other side.

Who was this so put off by fighting that they gave the money elsewhere. I'd like to know.

 

Gary showed an interest in doing a podcast on twitter.

I think a series of podcasts would be a great medium to show the enormity of the problem and theyre quite popular. It’s a lot cheaper to make than a tv documentary, media coverage only ever touches the surface. Could be patient led, no censorship...

 

I agree totally, @ukxmrv. I'm not defending her stance - I just don't don't want to see her accused of actually saying something she didn't.

 

Yes, that flashed into my consciousness as well. We need to keep hold of the positive, which sounds like to have been the meat of it.

I get the impression Dr Newton was doing her best to explain but might have done better not to.

And who, after all, has been promoting all this talk of discord, all this stuff about how horrible the patients are, and thereby putatively putting off the funding agencies? Three particular individuals associated with bad science have been drumming it into the public consciousness for the last several years. It never need have happened.

 

And

Absolutely. I actually thought the whole thing went really well and was a great achievement.

Well done Gary Burgess and thank you!

 

i think @Andy said he'd tried ro contact him.

 

Yeah, I've exchanged emails with him. And I pointed him in the direction of your weekly news posts so that he could easily get an idea of what gets posted.

 

That's exactly why it was the last thing we needed repeating by "our side" on yet another national media opportunity and the last time I heard her too, can't remember the occasion. Our side need to be highlighting the real blocks and practical ways things could change and get better.

 

Welcome @Gary Burgess

You did great yesterday.

Thank you very much.