BBC Radio 4: Children with ME

[Molly98]

Sorry no trimming of comment but using iPhone4 at moment which is a bit of a struggle.

I think it is crucial to understand that good investigative journalism is NOT advocacy for any particular cause! It is about exposing truths and lies and letting that speak for itself. If they do that for ME then pwme win hands down, and the BPS brigade will be totally screwed.

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.

 

[MeSci]

2nd long rant , sorry folks!

There are many points you make here @lilpink that I have been thinking myself.

I fail to see how any journalist could have interviewed all the people Hill has interviewed, including parents and children and not see the way ME patients have been treated as anything other than an outrage, and scandalous and a gross injustice ( unless they are from the Mail or Express of course) and feel personally enraged at the injustice and want to expose it in its entirety. In my opinion that did not happen, a long way from it. Hill seemed quite impotent to me.

My guess ( though I may be entirely wrong) is that more senior editors and others have the final say and much of it was watered down or neutralised.

I do understand and can relate to a lot of the positives @Barry53 @trishrhymes @MEMum and others are saying. I do see where you are all coming from you make good points and it is a step in the right direction moving from a gross bias towards the BPS lot to, well a more neutral position.

However, we as a community have been facing this gross injustice for decades now. The injustice is perpetuated by a gross imbalance of power where our voices and those of people who support us have been deliberately drowned out and ignored. The BBC have unfortunately been part of that up until now.

When such an imbalance of power occur, in my opinion, one of the jobs of serious journalists is to expose it and to give the disempowered a voice. This to me does also involve exposing not only the extent of the injustice and harm , but exposing those who are doing the injustice and harm and exposing the myths, lies and power dynamics which allow this to contiue. This was not done.

I know it has been mentioned by @charles shepherd and @Barry53 that this was for the general public rather than ME community. I would be interested in the impact it had on the general public. I have not noticed any comments on social media, other than from ME folks. I do wonder if it has had any impact on the general public, I feel that it is not enough, but then the general public has lots else to take their attention at present.

I just spoke to a friend who knew me before I got M.E. - when I was still incredibly busy with a full-time job, a car and plenty else. I gave her lifts!

She only knows two people with M.E., I think, both adults, and was shocked and impressed by the programme. She also has childen and grandchildren, and must be thinking now of what it would be like for them to be affected by M.E.

She can't be the only one.

If people can publicise the programme as much as possible, more people like my friend will hear it, and others may have their minds changed.

 

[MeSci]

I do think it is important that this is a safe place we can air our views on here as a community even where we disagree. I think it is important that we can critically analyse the file on 4 programme as we do with virtually everything else ME related on PR and we should not have to censor this to please journalists or researchers or charities. Hell, we can hardly meet down the pub and have these discussions can we?. To me it is healthy and vital.

I don't think anything that has been said on here is rude, abusive or derogatory to the journalist at all and for someone who produces work for the public domain, I would have thought people having differing and sometimes critical opinions on programmes he is involved goes hand in hand with what he does.

If he had come out passionately fighting for us as a community determined to expose this I would be very grateful, but I did not get this impression, he may well feel like this privately ( I really hope he does) and he had to temper it, he may have had constraints from powers above, I don't know, so I feel neither grateful or ungrateful.

That to me is very different from making a complaint to the BBC for bias or unfair coverage. I certainly don't feel the need to make such a complaint regarding this programme, I did when St Esther Crawley was interviewed last year. I don't feel it was unfair or biased, I would have just have liked it to be more honest and hard hitting and exposing the myths and lies and really the scandal behind how we have been treated.

Perhaps my expectations were to high, are too high, I do have expectation and hope that what is essentially a terrible injustice will be exposed and uncovered and those responsible will face difficult questions and be held accountable.

Time and time again Wessely and Crawley and White and co get off the hook and act with impunity as if they were untouchable, perhaps I was hoping this would begin to change with the BBC interviewing the likes of Nigel, getting information from Tymes Trust and interviewing Ron Davis and Co and going to invest in ME conference.

Perhaps I just expected with such excellent resources and information to draw on it would have been more informative and hard hitting. I do recognise the time limits thought with such a programme.

At the end of the day, this programme did nothing to ease my sense of injustice, rage or grief I feel as an ME sufferer individually and for the community as a whole.
It didn't worsen it, like Crawley's interview did, but it did not ease it.

Will it make a difference? I don't know. Will it provoke debate outside ME circles? I don't know.
I personally feel the BBC Scotland programmes have had more impact and were more positive for us, and I also wrote and thanked Kay Adams.

I am sure there will be many who do write and thank the BBC and journalist, just not me this time, I shall wait and see what else they produce.

The thing is, not everyone has M.E, so not everyone knows what we have to face day after day, year after year. Only sufferers and close loved-ones, and those with in-depth knowledge of the illness, know what we have to live with. So it is very difficult for anyone to put across exactly how we feel, and what we have to face.

In that sense, it may be better for someone with a little distance from the illness, as this time, to express it in their own way.

I hope I made sense there!

 

[jimells]

But if you believe it can be done, perhaps you could explain what a knock-out blow against PACE and/or the BPS doctrine might "look" like

FOLLOW THE MONEY.

Nobody outside our community cares about illness names, shifting criteria, switching primary outcomes, blah blah blah. (Hell I'm sick of it too. I just want my life back.) They want to hear a juicy scandal about people they really don't like very much. If they are rich and famous and have titles, that is even better.

And we have that scandal. In spades. We have a bunch of arrogant well-heeled ivory tower academics who have sold their souls to the evil greedy insurance companies (that everyone already understands to be parasites), and as part of the deal they are ordering uninformed-but-caring nurses and social workers to kill (or nearly) sick children, with forced activity.

Don't you think that would be a good story? I think it would have a bit more impact than a family who moved to the woods or a youngster who believes exercise is curing him, just as he was told to believe.

The outline of this story is well-documented in the public domain. Just because we don't currently have beyond-a-reasonable-doubt criminal court evidence doesn't mean the story is false, or shouldn't be told.

We do need that evidence. Desperately. But it won't be found if no one is looking. Based on this BBC program, they don't seem to be looking (I would be overjoyed to be proven wrong), but I suspect that David Tuller is...

Please watch Dr Nigel Speight's lecture at the CARE4ME conference, where he discusses children nearly killed by the BPS Brigrade. That is the story.

Why was it not the focus of this BBC report?

 

[Mark]

There is another BBC (TV) programme in the pipeline covering the PACE trial

As soon as we know a definite date and time of transmission we will announce this on the MEA website: www.meassociation.org.uk

CS

There is no imaginable 'like' button powerful enough to express my pleasure at reading this news!

 

[charles shepherd]

Yes, 2 years ago I spent a few months cultivarting the journalist Isabel Hardman, who has a friend or family member with the illness. I approached her because her writing is sympathetic and she is very well connected politically.

She eventually wrote a piece in the Spectator which maybe wasn't what the patient community was hoping for and she received abusive messages as well as messages which thanked her for trying and gave more information on the disease.

As a result, she said publicly she will never revisit the topic again. *sigh*

A bit of charm usually works better than abuse..

Yes, she comes across as a very pleasant person on TV and I also had contact with this journalist at the time

I think she was genuinely interested in doing something positive to help people with ME/CFS - but only had a basic understanding of all the complex issues

But she was quickly scared off the subject after receiving some offensive emails

My understanding is that she is no longer interested in covering ME/CFS stories

CS

 

[Stewart]

I mean no offence to anyone who's commented in this thread so far, but I'm genuinely baffled by some of the reactions that people seem to have had to this broadcast.

I thought this was probably the best piece of coverage that the British broadcast media has given ME/CFS issues in many years. It was built around the experience of patients and their families and it exposed the way that they are being let down by ineffective treatments, an ill-informed medical profession and accusatory local authorities. It gave a handful of patients and their families a voice, letting them explain in their own words the misery of developing a crippling medical condition for which there is no treatment - and the despair and disbelief when then you then recieve opprobium from the authorities rather than assistance.

Although the reporter was scrupulous in seeking a comment from any organisation whose conduct had been questioned, I don't think it's remotely fair to criticise him for trying to remain 'unbiased'. I agree that the report had a very even, balanced tone (but then even and balanced is the BBC's house style...) but there was a definite narrative thrust that the reporter developed across the programme:

• Patients and their families are being let down at present.
  
• The recommended treatments make many people worse.
  
• The research underpinning those treatments is controversial and has been called into question by independent analysis.
  
• The NICE Guidelines aren't being correctly followed by medical professionals at present.
  
• As a consequence patients are having inappropriate treatments forced on them - and facing child safeguarding proceedings if they don't comply.
  
• However NICE is now considering reviewing their guidelines, in the light of international concerns about the continued use of GET and CBT.

I don't understand how anyone can think that he gave 'equal time' to the other side of each of these propositions, or that he sat on the fence and refused to reach conclusions.

There are of course other things that I would have liked him to have included, and interviews I would have preferred him to use - I'm not suggesting it was perfect. But the SMC brigade didn't get a single look-in, and even the quotes they used from the interviewees that I wouldn't have chosen (Phil Hammond, Sonya Chowdhury) supported the narrative that the reporter was developing, so they served a useful purpose.

I'm sure that many of us would have preferred it if the BBC had spent 40 minutes tearing apart PACE and the complacent scientific establishment that continues to support such a shoddy piece of unscholarliness. But I strongly suspect that the average listener (someone who knows nothing about ME/CFS and has little interest in trial design and good methodological practices) wouldn't have as much interest in - or as strong an emotional response to - such a programme. I imagine that most parents who listened to last night's broadcast will have been deeply touched by the accounts of caring for a seriously sick child in the face of the medical profession's opposition - and I don't think a PACE expose would have had the same impact.

In particular I thought the last minute or so - where Sarah talks about her hopes for her daughter's future - was an outright gut punch, and a very powerful note to end on.

 

[Esther12]

Yes, this report was "a good first step", a few decades ago. How long should we quietly wait for "a good second step"? And how many more children will have their lives destroyed while we quietly wait?

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 saw her respond poorly to some justified criticism, but maybe some people were genuinely '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'.

 

[anni66]

I suspect that the point about which we are all gently tiptoeing is the absence from the programme of any mention of cases which have actually been presented to a court, with a resultant loss of rights of children or parents, when children fail to recover with the supposedly efficacious treatments.

We were told of threats of proceedings. It would seem natural to have mentioned cases where threats were carried out. We have been given to believe that there are, or have been, such cases.

The possibilities seem to be that either:

those beliefs were incorrect;

relevant information did not come to the attention of the journalist;

he had insufficient direct evidence to present a valid case; or

in any such cases the courts have imposed an order preventing disclosure of information, at pain of being found in contempt of court.

The latter possibility cannot be ruled out. If this were true it would seem to present great difficulties for the legal system. There would be likely to be a disparity of information available to the parties. It is hard to see how expert witnesses could be adequately cross-examined if there has been no open disclosure of outcomes in previous cases. Of course I may be wrong about this.

This springs to mind.https://www.healthrising.org/blog/2017/05/23/doctors-hyde-amy-browns-m-e-enterovirus-story/
Tymes Trust snd Nigel Speight would have no doubt been able to provide info

 

[jimells]

And knit picking about statements such as "the only thing that is certain is that nothing is certain"

(I've never had nits, but I've had chiggers, and those almost-invisible devils can nearly drive a person insane with the endless itching. They are definitely something that one needs to pick off as soon as possible.)

Dr Ron Davis (paraphrased): "I pretty well understand this illness now."

BBC Program: "The only certain is that nothing is certain."

Which of these statements is true? It can't be both.

The second statement is factually incorrect, and it casts a pall of doubt over the whole program. Since nothing is certain, maybe the parents that refuse treatments are wrong. Maybe patients just need to try a little harder. Since nothing is certain, maybe the psychs are right. Maybe we still need yet another CBT/GET treatment study to see if those treatments really do harm people. Maybe advocates should just shut up and be patient a few more decades.

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.

 

[Esther12]

BBC Program: "The only certain is that nothing is certain."

That seems a reasonable way of summarising all the uncertainty around ME/CFS to me. I don't have a problem with that claim - I can imagine saying it myself in a rather casual way.

 

[Jonathan Edwards]

(I've never had nits, but I've had chiggers, and those almost-invisible devils can nearly drive a person insane with the endless itching. They are definitely something that one needs to pick off as soon as possible.)

Dr Ron Davis (paraphrased): "I pretty well understand this illness now."

BBC Program: "The only certain is that nothing is certain."

Which of these statements is true? It can't be both.

The second statement is factually incorrect, and it casts a pall of doubt over the whole program. Since nothing is certain, maybe the parents that refuse treatments are wrong. Maybe patients just need to try a little harder. Since nothing is certain, maybe the psychs are right. Maybe we still need yet another CBT/GET treatment study to see if those treatments really do harm people. Maybe advocates should just shut up and be patient a few more decades.

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.

I think you will find that there is a sea change. There are people at the BBC who do care a damn.

I would agree with Charles. Nothing is really certain. Nobody has a grasp of the illness to my knowledge. I think Ron Davis would merely claim to have grasp of where best to start looking for answers.

 

[viggster]

It's hard for us who are in the thick of things and know the back story behind AfME, the CMRC, Crawley, etc to see the choice of speakers on the program and not shout out loud about the omissions of TYMES trust, Ron Davis, David Tuller and so on, but I do think their input to the reporter behind the scenes probably influenced the tone of the program for the good.

For a 40-minute radio piece, this reporter probably recorded many dozens of hours of interviews. Everyone he interviewed could not fit into the airtime - nor should they. However, all of those interviews did inform him and help him understand the entire landscape of a very tangled and thorny story. So his interview with Ron Davis was in all likelihood *not* a waste of anyone's time, as someone here suggested. Instead, the interview probably helped the reporter get a deeper view of the research happening now. Such background is immensely valuable and can help a reporter feel like they are on solid ground when deciding how to present specific issues - such as calling ME a neurological illness. A cheap way out would be to report that *some scientists says* it's a neurological illness. But he didn't do that - and the myriad interviews he did that did not make it onto the air no doubt helped steer him in the right direction.

Whenever I interviewed scientists in my former life as a science reporter (which I did a few thousand times), I almost always gave them a little disclaimer that I might not directly quote them, but that their input would be valuable nonetheless. (And that was *usually* true. Wink wink.)

 

[Londinium]

I think she was genuinely interested in doing something positive to help people with ME/CFS - but only had a basic understanding of all the complex issues

But she was quickly scared off the subject after receiving some offensive emails

My understanding is that she is no longer interested in covering ME/CFS stories

CS

That's depressing. I remember sharing with her a couple of New Scientist articles on Rituximab at the time mainly to show that there was some mainstream emerging science that questioned the psychosomatic view. IIRC she was writing the piece because Rod Liddle had written a vicious uninformed hatchet job on PwME and she wanted to put the alternative view. And I seem to remember that her piece overall was sympathetic when it finally came out.

The thought that a few keyboard warriors sent hostile emails that meant we've now lost a friendly, credible voice - all because, in their view, she didn't hit an impossibly high minimum standard - really angers and upsets me. It hurts all of us.

 

[arewenearlythereyet]

For a 40-minute radio piece, this reporter probably recorded many dozens of hours of interviews. Everyone he interviewed could not fit into the airtime - nor should they. However, all of those interviews did inform him and help him understand the entire landscape of a very tangled and thorny story. So his interview with Ron Davis was in all likelihood *not* a waste of anyone's time, as someone here suggested. Instead, the interview probably helped the reporter get a deeper view of the research happening now. Such background is immensely valuable and can help a reporter feel like they are on solid ground when deciding how to present specific issues - such as calling ME a neurological illness. A cheap way out would be to report that *some scientists says* it's a neurological illness. But he didn't do that - and the myriad interviews he did that did not make it onto the air no doubt helped steer him in the right direction.

Whenever I interviewed scientists in my former life as a science reporter (which I did a few thousand times), I almost always gave them a little disclaimer that I might not directly quote them, but that their input would be valuable nonetheless. (And that was *usually* true. Wink wink.)

I agree. Also just because he didn't use the interviews in this programme doesn't mean he won't use them in future ones (with permission of course)

I think we all need to think of this as part of a wider campaign now. There has been a lot of small pieces coming together. What we can do is spread the word selectively on the pieces that count.

I've started compiling a list of links on a spreadsheet and send these out to friends (what's left of them) and family as and when they occur with a quick one liner as to what it's about.

I will send this program out under the header " good piece illustrating the harassment of children with ME" please pass on to anyone you think may be interested in finding out more about ME/CFS. I am selective as to what I send out. I won't be sending out the doctor in the house episode for instance.

I'm sure lots of people do the same. I just wish we had more to play with and a more coordinated approach.

I am hopeful that this year we will see more than we have ever had in the last 10 years.

 

[PeeWee]

Would you be prepared to share your spreadsheet @arewenearlythereyet? Sounds like a really useful resource.

 

[Barry53]

I mean no offence to anyone who's commented in this thread so far, but I'm genuinely baffled by some of the reactions that people seem to have had to this broadcast.

I thought this was probably the best piece of coverage that the British broadcast media has given ME/CFS issues in many years. It was built around the experience of patients and their families and it exposed the way that they are being let down by ineffective treatments, an ill-informed medical profession and accusatory local authorities. It gave a handful of patients and their families a voice, letting them explain in their own words the misery of developing a crippling medical condition for which there is no treatment - and the despair and disbelief when then you then recieve opprobium from the authorities rather than assistance.

Although the reporter was scrupulous in seeking a comment from any organisation whose conduct had been questioned, I don't think it's remotely fair to criticise him for trying to remain 'unbiased'. I agree that the report had a very even, balanced tone (but then even and balanced is the BBC's house style...) but there was a definite narrative thrust that the reporter developed across the programme:

• Patients and their families are being let down at present.
  
• The recommended treatments make many people worse.
  
• The research underpinning those treatments is controversial and has been called into question by independent analysis.
  
• The NICE Guidelines aren't being correctly followed by medical professionals at present.
  
• As a consequence patients are having inappropriate treatments forced on them - and facing child safeguarding proceedings if they don't comply.
  
• However NICE is now considering reviewing their guidelines, in the light of international concerns about the continued use of GET and CBT.

I don't understand how anyone can think that he gave 'equal time' to the other side of each of these propositions, or that he sat on the fence and refused to reach conclusions.

There are of course other things that I would have liked him to have included, and interviews I would have preferred him to use - I'm not suggesting it was perfect. But the SMC brigade didn't get a single look-in, and even the quotes they used from the interviewees that I wouldn't have chosen (Phil Hammond, Sonya Chowdhury) supported the narrative that the reporter was developing, so they served a useful purpose.

I'm sure that many of us would have preferred it if the BBC had spent 40 minutes tearing apart PACE and the complacent scientific establishment that continues to support such a shoddy piece of unscholarliness. But I strongly suspect that the average listener (someone who knows nothing about ME/CFS and has little interest in trial design and good methodological practices) wouldn't have as much interest in - or as strong an emotional response to - such a programme. I imagine that most parents who listened to last night's broadcast will have been deeply touched by the accounts of caring for a seriously sick child in the face of the medical profession's opposition - and I don't think a PACE expose would have had the same impact.

In particular I thought the last minute or so - where Sarah talks about her hopes for her daughter's future - was an outright gut punch, and a very powerful note to end on.

Perfectly said.

 

[Barry53]

That's depressing. I remember sharing with her a couple of New Scientist articles on Rituximab at the time mainly to show that there was some mainstream emerging science that questioned the psychosomatic view. IIRC she was writing the piece because Rod Liddle had written a vicious uninformed hatchet job on PwME and she wanted to put the alternative view. And I seem to remember that her piece overall was sympathetic when it finally came out.

The thought that a few keyboard warriors sent hostile emails that meant we've now lost a friendly, credible voice - all because, in their view, she didn't hit an impossibly high minimum standard - really angers and upsets me. It hurts all of us.

A worry of mine is, given how unscrupulous we know "the other side" be ... Would they arrange some of their own following to pose as one or two of these aggressive keyboard warriors in order to scare off such journalists? Although I must admit there are very very tiny minority of people in PR I could imagine being capable of it - it's a statistical inevitability.

 

[A.B.]

A worry of mine is, given how unscrupulous we know "the other side" be ... Would they arrange some of their own following to pose as one or two of these aggressive keyboard warriors in order to scare off such journalists?

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.

 

[Barry53]

There is no imaginable 'like' button powerful enough to express my pleasure at reading this news!

If we end up with a Panorama-style TV programme exposing PACE, and how it has influenced medical and public opinion towards pwme, along with all the knock on effects from that, then we will truly be at the start of something big. Not unheard of for such programmes, exposing such massive public injustice, to trigger questions being raised in parliament. I know questions have been raised before but this would be very different if preceded by powerful BBC TV documentary.