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

Jonathan Edwards said:
It reminds me a bit of the way some people treated me when I said I wanted to spend my career studying rheumatoid arthritis. The impression was that nobody with any zap would want to help a lot of old ladies in wheelchairs with crumpled up hands. They would want to do open heart surgery. They seemed unaware that those old ladies were once, thirty years earlier, young women with fulfilling lives which they lost to be condemned to pain and immobility.
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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.
 
Jonathan Edwards said:
Maybe Dr Newton is actually trying to say that, but there are times in a research career when one has to tie ones colours to the mast and let them be seen.
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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.
 
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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
 
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Jonathan Edwards said:
As far as I can see, up until now, everyone has claimed to be bosom chums. And that has been the problem.
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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.
 
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Invisible Woman said:
To be fair, she didn't say this. She did say patients were quite rightly angry. Then she went on to say that because of the infighting between different groups

(about 27 mins in....)
" as a field we are not united and, because of that, quite reasonably, policymakers 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...."

I don't necessarily agree with what she said, but she didn't actually say she blamed patients.

I think she was tying herself in knots trying not to blame anyone and has come out of it looking worse than she otherwise might. That's what hanging out with AfME et al will do to you!
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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
 
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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... :confused:

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.
 
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Invisible Woman said:
Great. A full transcript would be useful. My typing skills aren't great and I don't really like listening to the radio.

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.
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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 .
 
Invisible Woman said:
To be fair, she didn't say this. She did say patients were quite rightly angry. Then she went on to say that because of the infighting between different groups

(about 27 mins in....)
" as a field we are not united and, because of that, quite reasonably, policymakers 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...."

I don't necessarily agree with what she said, but she didn't actually say she blamed patients.

I think she was tying herself in knots trying not to blame anyone and has come out of it looking worse than she otherwise might. That's what hanging out with AfME et al will do to you!
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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...
 
Andy said:
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.
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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.
 
Andy said:
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.
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And
Jonathan Edwards said:
We need to keep hold of the positive, which sounds like to have been the meat of it.
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Absolutely. I actually thought the whole thing went really well and was a great achievement.

Well done Gary Burgess and thank you!
 
Jonathan Edwards said:
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.
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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.
 
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