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

Restarting now.

 

15:40 on a break now. I've sent in a text, but don't know if they're going to come back to ME.

Edited - have to stop listening for now. I find radio/sound very difficult.

 

Most of the biomedical research is Small scale stuff, sometimes the daily mail pick up on it with an "ME not in the mind after all" story. Whilst it seems medical news is all over the place it's actually more groundbreaking stuff I think then our research which "always needs more replication" etc. On the other It's the establishment vs us and the estsblishment can't be challenged, especially on a ""grey area" supposedly area of medicine.

 

My thoughts as I listened

Gary is a good speaker. Being a journalist he might be quite a good advocate. I'm pleased he's recognising the suffering of those single and without support. He's called the current situation a scandal and tragic, good stuff so far.

It's important though that he conveys longer term, entrenched and severe ME though otherwise the idea ME is just a glandular fever type thing to endure and live with and finally overcome with self help will prevail. It can be astonishingly disabling, much more than Gary's level, bad though it sounds.

Julia Newton blaming patients, conflict and anger for lack of progress, tbh I knew she would that's why my heart sank. MS Parkinson's dementia gets proper respect, effort and funding these are all complex illnesses too. It's entirely failure of the medical community, political will, funding body apathy etc. Definition is a problem but people have tried to sit around tables and that's how we got the CCC, ICC and IOM consensus criteria but still, especially in the uk, most establishment people have refused to use them as too specific, limiting or complex & NICE just write their own, so what are we supposed to do? If the MRC had continued offering ring-fenced incentive funding to stimulate research from 2012 and agreed to recognise ME as well as or over the fatigue it's been preoccupied with, we wouldn't be in this situation. Likewise the CFS name and weak - Oxford /NICE criteria- have been very deterring in the UK. We have had shed loads of psychological research exploiting this weak criteria to produce fatigue studies promoting exercise as a cure. Why weren't any of these factors mentioned if we are actually going to try to look at ways forward?

Well done Annie phone in and Jen who brought in important information right at the end. I think Gary really gets the neglect side and isn't afraid to say it) so I look forward to more advocacy

Edit
I think people on here are very lenient on this from JN. There were /are many things that need changing to make progress that won't if people won't make a stand on them. , patients being less angry and shutting up isn't on the list AFAIC. AFME et al are big on "coming together" but they usually mean by backing the CMRC, not "discriminating against others" by calling for stricter criteria, and letting GET researchers be part of a big tent. No thanks. On a program on why is there so little knowledge /treatment/progress - listing patients, angry climate and criteria (how to we all sit around and agree and on what?) didn't really help AFAIC. Interesting how strongly she emphasised they the medical profession doesn't recognise ME at all

 

Like jumping on a circle saying 'stop'

My point is,the media don't attempt to join the dots to see that all roads lead to SW (excuse the mixed metaphors)

 

I disagree with this. I believe she very carefully chose her words in such a way that, although you could get that impression, she didn't actually blame patients.

 

What will the public think I wonder?i got the impression patients need to calm down and stop scaring people off or seeming undeserving. I will listen again. I wrote as I listened so may have misinterpreted but there was a lack of constructive ideas for progress at least I thought , other than "coming together"

 

fair point. The lack of joining dots us frustrating but uk journalism seems poor on this, there has to be a fundamental sympathy to even see a need to try

 

But what do you think her intent was? To give that impression, but later be able to say to critics that if you listen carefully she did not actually blame patients? Or was she trying to do the right thing do you think?

 

I agree it would be easy to get that impression and I have no doubt that many will, but she chose her words very, very carefully.

 

I dont know. It may be it was her intent to give that impression or it may be that she was so busy being careful, trying to speak while actually saying as little as possible, that she gave the wrong impression.

To be honest, she struck me as a person trying to keep everyone happy, especially the "establishment". Maybe she just doesn't realize that just won't wash anymore.

 

Maybe she should realize that bad things happen when good people sit back and play it safe rather than tell it like it is. Ah sure, what's another few decades of suffering...

 

However, she didn't need to make that comment at all. There were other things she could have made more useful comment about

 

I have enormous respect for Julia Newton. She is one of the few (?only) people who has managed to get any research grants for biomedical research into ME. She has worked strenuously in this field for years despite the stigma she gets from others who work in the fatigue and probably other fields.
I do remember a few years ago at an IiME that I was a little disappointed that most of her talk was about OI and blood flow etc. However recently it seems that numerous people with ME, especially children have OI or POTS. ( I know our Prof won't necessarily agree!)

We must not forget that although it is crystal clear to us that PACE and the MOB (BPS lot renamed as Monstrous Obstinate Bullies, or however else you want to describe them) are WRONG. (This is putting it mildly).

Those in charge of Grant Awarding bodies and possibly heads of RCP/RCGP ..... are still under the psychogenic spell.

Yes I know my Grammar etc is not great above, but hopefully you get my point.

 

Yes. I agree. It's the whole establishment pleasing, better to be in the tent than out of it philosophy. It hasn't worked in the two decades Ive been ill and I am fed up to the back teeth with it.

 

Sounds like sitting on a fence but finding sharp bits sticking in no matter which way you turn. Not realising the best solution is to get off the fence ... on the right side.

 

On relistening, Newton was so guarded and careful. She said a few positive things but re. She said that patients and clinicians and researchers were angry with each other... firstly as JE said it's not across the board, then she said because there was no united front/disagreement, policy makers with limited purse strings REASONABLY put the money into other areas. I don't agree it was reasonably, it was neglect - you don't just abandon a large group of sick men, women and children, a significant public health issue and cost to the economy because there's controversy and disagreement. You plough in money to make the picture clearer.

AFAIC money , pre PACE results , wasn't ploughed in because the MRC decided we didn't need to understand the illness to treat it and they threw all the money at behaviour treatments they blindly believed in. That took us to 2011, When that didn't have great results and FINE had nil, they opted for the small start approach to funding but would not continue with ring fencing beyond one year, as even AFME were saying was essential to establish the research field, they just didn't want to put money into the field. Scandal.

 

I find this statement (if it is what was said) completely unreasonable. There is absolutely no way that there can be any justification in a claim that it is, in any way, the fault of patients that we do not understand ME better. You might as well say it is the fault of people with cerebral palsy that the engineers have not been deft enough to make robots that can help them walk. If people with a neglected illness are very very angry that is their right. It should have no effect whatsoever on the way research programmes are developed.

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.

Sometimes the crassness of medical colleagues is breathtaking. I have not listened to this programme but if there was any hint that the lack of progress is somehow due to the patients being uncooperative I think those who suggested it should be ashamed.

It is now plain for everyone to see - the patients were angry because some of the research was very very bad!

 

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!

 

OK, I respect that and that is rather what I would have expected.

But the lack of unity is entirely down to the bad behaviour of a particular group who have been parading their poor research as if gospel. There is no way that any of this is the fault, for instance, of IiME walking out on their own, or patient petitions pointing out half baked proposals. It is down to those doing bad research and pretending it is good. 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.

Edit: I guess if she really is referring to the research community rather than charities and patients the the question is in what sense is the research community not united in a way that might have discouraged funding. As far as I can see, up until now, everyone has claimed to be bosom chums. And that has been the problem.