BBC Radio 4: Children with ME

[Barry53]

I know people who've tried to take a few steps themselves, and found out how hard it can be to achieve much in the UK media on ME/CFS. The BBC has been shit on ME, and no one programme will make up for that, but it sounds like the people who made this programme have done much better than most.

re Isabel Hardman - she trusted Sharpe and the usual spin, so I think people were right to be critical of her for that, even if she may have found that 'offensive'. I thought that the piece she wrote was terrible even if she was trying to be 'sympathetic'. I don't want sympathy. Suzanne O'Sullivan is 'sympathetic'.

Exactly. Sympathy is pointless. Much more effective if journalism exhibits no sympathy either way but let's the truth speak for itself, which it needs to expose in ways that are understandable by all.

 

[lilpink]

And I think it's bl**dy unfair to accuse CS of SWism.

I think the comparison was almost identical . I object to your objection.

 

[lilpink]

If the ME community has been unfairly portrayed as being a bunch of mentally ill aggressive nutters who harass anybody involved with the subject, then rage is the worst possible response as it just plays into that image. It's entirely counterproductive.

There are ways to express rage.. you are misunderstanding me entirely. . We must stop 'settling' we must feel the rage to advocate. Look if the mods want to chuck me off PR I really don't mind, but I've been ill too long to settle for navel gazing softly softly 'oh buts'. I'm not advocating acting like 'nutters' or 'harassing' anyone, but this attitude of acceptance makes me rage inside. I just don;t get it. When people get antsy things happen... we can harness our inner rage to do this. The way that is shown doesn't have to be aggressive but it does have to dynamic. Yes we know others are interested in possibly making a Tv programme.. I see CS has let that out of the bag..I was under the impression it wasn't supposed to be so widely disseminated yet... but the sorts of investigative journalists who 'get it' aren't the lily livered operatives who have one foot in the SMC camp and another at the BBC are they? We're not expecting James Gallagher to do an expose any time soon for obvious reasons. But surely as a population we are allowed to express the sort of aggrieved (but contained) rage that being ill for almost 50 years has, I'm inclined to think, permitted me to feel? If that makes BBC execs run for the hills then they really are in the wrong job. News thrives on dynamism ..... our rage, utilized in the right way, is the best possible way to move things forward. the 'non-rage version..the colluding in 'tents' has got us nowhere at all. The most likely scenario to not getting our story aired is that the SMC are pulling the strings... it won't be because advocates advocate.

As I say if this goes against the PR grain then I'm really very much in the wrong place and do please just drop kick me out of here.

 

[Barry53]

I hope so @Barry53 I certainly do, and perhaps it is one brick at a time as Andy I think put it. I am just more into a John Pilger style of Investigative Journalism, now I wish he would take up our cause.

Sorry Molly but cannot recall where you hail from. But here in Brit land a good hard hitting old-fashioned Panorama-style exposé of PACE will have far greater impact in the way we want. I know other documentary styles may be more entertaining as per the modern style, but the older style documentary though deceptively laid back, can be devastatingly potent, and if well made, will leave beggar all wriggle room for those finding themselves on hooks. Those programmes will have huge amounts of research done beforehand, and for PACE especially. But the BBC as it used to be was highly skilled at this, so I'm beginning to feel hopeful.

 

[lilpink]

For interest. Kings College London at the cutting edge of promoting MUS and FII. Coming to a lecture theatre near you.

" Understand that MUS (Medically Unexplained Symptoms) and FII (Fabricated and Induced Illness) are part of a spectrum of perplexing presentations, and that a nuanced and careful approach is the best way of dealing with these complex families"

So MUS and FII are both related to 'complex families' are they? I suspect Nigel Speight and Jane Colby might feel differently.

https://www.eventbrite.co.uk/e/gp-o...and-medically-unexplained-tickets-34967086497

****

and also at the RCPCH (but with KCL heading the FII/MUS charge):

2.15pm: C) Practical approaches to working with possible FII Dr Virginia Davies, Consultant in Paediatric Liaison, SLaM/King’s College Hospital

http://www.rcpch.ac.uk/courses/how-manage-child-mental-health-general-paediatrics

 

[Mrs Sowester]

Had some feedback from a relative who I asked to listen:

"very sad and tragic. It is interesting how humans decide whether or not to express compassion to other living things, I've never understood it.
I think it was a very good program.
Let's hope things improve speedily and that the Norwegian cancer drug study yields useful results for the majority of sufferers."

So I asked - Can I just ask whether you felt there was any ambiguity about the cause of ME? There is concern
that it wasn't explicit enough as to whether it is psychological or physical.

"I thought the celebrity doctor Hammond covered that quite explicitly didn't he? I guess it depends what people think about neurological disorders though which I think is what he put it down to at the end. I don't see a sharp distinction between brain and body, there's more fuzziness the more we learn but then i'm not living with the prejudice shown to sufferers of your condition."

 

[Barry53]

There are ways to express rage.. you are misunderstanding me entirely. . We must stop 'settling' we must feel the rage to advocate. Look if the mods want to chuck me off PR I really don't mind, but I've been ill too long to settle for navel gazing softly softly 'oh buts'. I'm not advocating acting like 'nutters' or 'harassing' anyone, but this attitude of acceptance makes me rage inside. I just don;t get it. When people get antsy things happen... we can harness our inner rage to do this. The way that is shown doesn't have to be aggressive but it does have to dynamic. Yes we know others are interested in possibly making a Tv programme.. I see CS has let that out of the bag..I was under the impression it wasn't supposed to be so widely disseminated yet... but the sorts of investigative journalists who 'get it' aren't the lily livered operatives who have one foot in the SMC camp and another at the BBC are they? We're not expecting James Gallagher to do an expose any time soon for obvious reasons. But surely as a population we are allowed to express the sort of aggrieved (but contained) rage that being ill for almost 50 years has, I'm inclined to think, permitted me to feel? If that makes BBC execs run for the hills then they really are in the wrong job. News thrives on dynamism ..... our rage, utilized in the right way, is the best possible way to move things forward. the 'non-rage version..the colluding in 'tents' has got us nowhere at all. The most likely scenario to not getting our story aired is that the SMC are pulling the strings... it won't be because advocates advocate.

As I say if this goes against the PR grain then I'm really very much in the wrong place and do please just drop kick me out of here.

Controlled anger often is the potent fuel behind well directed and strongly determined advocacy. I'm all for that, and I believe is what you are saying here. It's uncontrolled anger I have no time for, that makes people feel better but damages the cause for everyone.

 

[trishrhymes]

Thanks, @lilpink for alerting us to these MUS training sessions. They are spreading like the plague. Sigh. We have a lot to fight. Probably worth starting a new thread if there isn't one already.

As to your post about being justifiably angry, I agree with you that you are absolutely right to feel outraged at the way the media has been stitched up for so long by the BPS crew. I certainly don't think you should leave PR. You are right to express what you think.

 

[Barry53]

Personally I think some peoples expectation of this programme here is way over the top. To me a number of people seem to have been expecting something that would bring PACE and all in the BPS cult crashing down and that was never going to happen with this. The fact that we got a programme that wasn't a simple SMC whitewash of all the issues should be celebrated, given what we've got in the past.

As a comparison, did people have the same level of expectation for David Tuller's initial saga on PACE? I would suggest that they didn't, they appreciated that it would, and will, take many articles, programmes, critiques and papers written about PACE and BPS before we are rid of them, and even when we have biomarkers and proper treatments we probably still won't be rid of them completely.

So to load so much expectation on a 40-odd minute radio programme is unfair. I get why people want to see a massive knockout blow delivered but it just isn't going to happen, ever.

Bang on.

 

[Stewart]

I think the comparison was almost identical . I object to your objection.

There is, in my opinion, a very important distinction. CS was saying that journalists *might* choose not to cover ME/CFS stories as a consequence of patients' reactions - and as others in this thread have made clear, this is a legitimate concern given that there's evidence to show this has happened in the past. SW says that researchers *have* chosen not to study ME/CFS as a consequence of patient harassment - but has never provided any evidence to support his claim that harassment is occurring, let alone that researchers have left the field because of it. I don't think it's reasonable for you to suggest that CS's evidence-based concerns are comparable with SW's unverified allegations.

There are ways to express rage.. you are misunderstanding me entirely. . We must stop 'settling' we must feel the rage to advocate. Look if the mods want to chuck me off PR I really don't mind, but I've been ill too long to settle for navel gazing softly softly 'oh buts'. I'm not advocating acting like 'nutters' or 'harassing' anyone, but this attitude of acceptance makes me rage inside. I just don;t get it. When people get antsy things happen... we can harness our inner rage to do this. The way that is shown doesn't have to be aggressive but it does have to dynamic. Yes we know others are interested in possibly making a Tv programme.. I see CS has let that out of the bag..I was under the impression it wasn't supposed to be so widely disseminated yet... but the sorts of investigative journalists who 'get it' aren't the lily livered operatives who have one foot in the SMC camp and another at the BBC are they? We're not expecting James Gallagher to do an expose any time soon for obvious reasons. But surely as a population we are allowed to express the sort of aggrieved (but contained) rage that being ill for almost 50 years has, I'm inclined to think, permitted me to feel? If that makes BBC execs run for the hills then they really are in the wrong job. News thrives on dynamism ..... our rage, utilized in the right way, is the best possible way to move things forward. the 'non-rage version..the colluding in 'tents' has got us nowhere at all. The most likely scenario to not getting our story aired is that the SMC are pulling the strings... it won't be because advocates advocate. .

I agree that there are ways to express rage - there are also *times* to express rage, and legitimate targets to express that rage against. I think what the people who disagree with you are saying is that the BBC is not a legitimate target right now, given that they broadcast a supportive programme just a couple of days ago. Sending them an email thanking them for the report and politely but firmly encouraging them to do more on the topic is not in any way 'settling' or adopting 'an attitude of acceptance' - it's smart advocacy. On the other hand, emailing them now to complain that they didn't go far enough, that they watered down the report and that they're obviously in the SMC's pocket - well, that would be spectacularly self-defeating, and would only play into the SMC's 'unreasonable patients' narrative. It would make further coverage less likely, not more likely.

I don't think anybody's saying that we shouldn't be angry - they're just saying that it's unproductive to direct that anger against journalists and media organisations right after they've produced fair coverage of ME/CFS issues. You'll only make people back off when you want to draw them further in.

 

[Solstice]

Sometimes when I can't sleep at night I fantasize about winning a gazillion dollars and buying some airtime for the unrest documentary aswell as a documentary about PACE and the entire history of how psychologists and psychiatrists have treated this disease. There would then be a talkshow to follow and I'd get invited to deliver my point of view.

I've also thought about how I'd handle that. In my fantasy the PACE team would get invited and a couple of the "good guys" would get invited too, the once I know from this forum. I've fantasized about this a lot and always thought about what would be the most potent. Me getting mad and calling PACE a piece of s***e, or other more colorful terms and me being very derogatory against the PACE team. But when I think about how I view persons that do stuff like that, they always come across erratic and working against their own cause.

So I chose another fantasy option and that is to stay very succinct and to the point, with the help of the good guys point out the biggest flaws(open label trial with subjective measures, patient cohort selection, null result in ltfu). Then point people to some website where we'd store all the links and info on PACE, links to virology blog etc. Tell them if they want to know more, they can just look around there. Also tell them about a lot of wonderful research being done and if they want they can follow one of the links on the website to donate to the good cause.

I really think laying out the facts, staying polite but to the point get's our point across the best, however outraged we might be(I definitely am). If I read through the comments here this program did just that. It didn't cover everything because it can't possibly. I get @lilpink being very very mad, because we as a community had it very very rough. But my opinion with the facts I know is that this program is perhaps the best we could've wished for. A program that layed out facts and set us up for more to follow.

 

[AndyPR]

From AfME Facebook post https://www.facebook.com/actionforme/posts/10155438215718209

“I ended up being reported to social services…I had to deal with child protection because they thought I was deliberately making her ill.”

Our case study Christine, whose young daughter has M.E., spoke to Andy Collins on BBC Three Counties Radio about her experiences this morning as part of a report on our national survey into the experiences of families affected by M.E. who’ve faced false accusations of abuse, neglect and fabricated/induced illness, which found that one in five families have had a safeguarding/child protection referral made against them.

Andy also heard from ‘Sarah’, a mother whose daughter is so severely affected by M.E. that she can’t even get to the toilet without her help and had to be tube fed because she couldn’t eat. Her daughter was labelled with an eating disorder and told that she “couldn’t possibly be in as much pain” as she said she was. ‘Sarah’ was also accused of deliberately keeping her daughter unwell.

The show also featured our CEO Sonya Chowdhury, who emphasised that “we want to ensure that social workers understand the illness so that they can see where it’s the illness causing symptoms, not the parents.”

You can listen to the broadcast here: http://www.bbc.co.uk/programmes/p054zf18#play

Christine begins talking at 1:18:00 and ‘Sarah’ talks at the 2:20:00 mark.

We'd like to thank Christine and 'Sarah' for speaking so openly about their experiences today and helping us raise awareness of this horrible situation.

 

[Londinium]

There are ways to express rage.. you are misunderstanding me entirely. . We must stop 'settling' we must feel the rage to advocate.

If you're using 'rage' as a synonym for motivation or determination, then we don't disagree.

but I've been ill too long to settle for navel gazing softly softly 'oh buts'.

Again, I don't think our positions are as far apart as they may appear. Nobody is asking that we should listen to that BBC programme, go 'that's enough' and stop advocating for more coverage and meaningful change in attitudes from the media medical authorities. On this we agree.

My point remains this: a forty minute radio programme might not cover everything we want it to, but that is incentive to keep plugging away. However, those stating that they were 'disgusted' or that this journalist 'is no use to us' harms, not helps, our cause.

(As an aside - and this is not directed at you, nor other PR users, at all - but I just went back and re-read that Isabel Hardman piece to see if I'd misremembered it. I hadn't seen previously the P.S. and P.P.S. that had been added after I'd read it the first time. I genuinely can't understand how somebody can think it helps any ME sufferer by using phrases like 'b*tch comment' or 'just don't write about it'. Who achieved more? The respondent telling a journalist to never write about ME again, or the considered approach of Tom Kindlon explaining why ME sufferers have other concerns that weren't covered in the initial article? Arguably the former lost us a potential ally and the next time Rod Liddle - a man who suffers from a genital underendowment syndrome that causes him to lash out at every vulnerable group he sees - writes a lot of vituperative nastiness about ME he'll go unanswered)

 

[Londinium]

Actually, you can pretty much ignore my post above. @Barry53 and @Stewart have already made the points I was trying to make, but better than I.

 

[lilpink]

Controlled anger often is the potent fuel behind well directed and strongly determined advocacy. I'm all for that, and I believe is what you are saying here. It's uncontrolled anger I have no time for, that makes people feel better but damages the cause for everyone.

I completely agree and I'm glad you have understood my message.

 

[lilpink]

I certainly don't think you should leave PR. You are right to express what you think.

Thank you Trish. It's very good of you to say that. I'm not inclined to prevarication so I can be blunt. I tend to think 'blunt' gets things done more quickly

 

[lilpink]

I think what the people who disagree with you are saying is that the BBC is not a legitimate target right now, given that they broadcast a supportive programme just a couple of days ago.

I think you might have skimmed over the post where I said I now only tend to mail journalists to thank them for work well done. On this occasion I didn't think it warranted it for all the reasons I earlier made plain. Also I regard this as a forum to discuss as patients / advocates what we think about particular aspects of research and advocacy and so I think it's more than reasonable to enumerate my concerns about the failings I perceived apropos the File on 4 programme. I have not expressed these views directly to the BBC at all. If the BBC bothers to read this forum then that's fine..and hopefully they might be guided by constructive criticism to do better next time. So I'm confused: you seem to be confounding me with 'nebulous others' who have written to the Beeb?

 

[Esther12]

I don't know why some folks are afraid to criticize the BBC. Does BBC really give a damn what some yahoo with a keyboard and a big mouth think of them? If so, that would be a real sea change, 'cause they haven't given a damn about us for the past thirty years.

It's more that some people don't want to criticise the specific journalists repsonsible for this programme because they think that they did a good job, and they recognise how hard it is to get anything decent on ME into the UK media. There are people at the BBC, SMC, etc who certaintly deserve criticism.

A sciencebasedmedicine article on PACE had a comment by a person who claimed she had a collection of abusive emails and facebook posts by patients. She showed a screenshot of a facebook post with death threats directed at Wessely (or something like that). Another poster then pointed out some inconsistencies which had led him to believe that the screenshot had been made by the same person that had written this abusive post. Then poster then deleted the original screenshot and claimed that it had been a screenshot of a screenshot or something to that extent. Ever since then I have also thought about the possibility of the PACE authors fabricating evidence of abuse. It's no worse than outcome switching and suppressing the real results of PACE. If they wanted to do it, it would be trivial and only take them 5 minutes.

LOL - why is everything so weird?

I can't believe that the PACE researchers would do anything like that. I guess it is possible they could have teenage kids who would though? Or some unconnected 'supporter'?

 

[Stewart]

So I'm confused: you seem to be confounding me with 'nebulous others' who have written to the Beeb?

I don't think I'm confounding you with anybody. Over the course of this thread you've repeatedly expressed your disappointment that we aren't expressing our 'rage' sufficiently - you explained just a few posts back that you think we must 'feel the rage to advocate' and that we must 'harness our inner rage' to bring about change. I'm saying that in terms of how we respond to this particular BBC programme - which is what this thread is discussing after all - that's an unhelpful attitute to be advancing.

Even if you're not sending aggrieved emails to the BBC yourself, someone else could read your tirade against "the lily livered operatives who have one foot in the SMC camp and another at the BBC" and very easily conclude that this what you're actually advocating. I'm explaining why - in my opinion - that would be a self-defeating course of action right now.

 

[Barry53]

I can't believe that the PACE researchers would do anything like that. I guess it is possible they could have teenage kids who would though? Or some unconnected 'supporter'?

But I would not put it past them to "socially engineer" others to do their dirty work for them, to me it feels like their stock in trade. If their moral compass allows them to do all the other things they have done, I'm not sure it would stop them doing other stuff, such as deliberately shit-stirring some flakey keyboard warriors etc.