BBC Radio 4: Children with ME

[Mrs Sowester]

I have contact with a wide range of health journalists

Rightly or wrongly, a small but significant proportion still believe that the ME/CFS patient group is one of the most difficult that they have to deal with and that (as a result of previous bad publicity) there is 'harassment' of researchers that people do not agree with

Hence the reluctance of some health journalists to present a balanced picture when they report on ME/CFS - especially some of the research studies

So, to be clear, there is a perception of potential harassment, rather than actual harassment? And people with ME don't write more emails and send complaints than other groups?

 

[charles shepherd]

That sounds awfully like the Wessely School insinuating that harassment of them leads to fewer people wanting to study the disease, which is both troubling and wrong. As we know the more noise pwme have made over the last few years the more decent researchers have come to the fold. Is nobody ever to be held to account?

I was just pointing out that if you criticise a health journalist who has tried his/her best to try and do something useful for people with ME/CFS, don't be surprised if they then decide to move on to another health condition where they feel they will be appreciated by the patient community for what they are doing….

CS

 

[slysaint]

Hence the reluctance of some health journalists to present a balanced picture when they report on ME/CFS

and yet Radio BBC Scotland and Look-east BBC TV (I think it was did coverage of conference in Norwich) managed to do it very well and when they replied to an email I sent to congratulate them they said they had been overwhelmed by the [positive] response.

 

[jimells]

@Molly98 I didn't pick up any ambiguity about the biological cause of ME, it was clearly described as a neurological condition from the start.

Ambiguity is the overall theme of the report, starting with the family that moved away to "hide in the woods". I expect Joe Sixpack, who already thinks we are slackers living on the dole, will be tempted to think of them as nutters. This disturbing quote from Matthew Hill sums up the report quite well:

The one thing that is certain is that nothing is certain.

(about 33 minutes in)

This is complete rubbish. I'm sure I don't have to explain to this group why it is rubbish, and why it is so harmful to us. What happened to the kids who have been seized by the state? I thought their plight was supposed to be the whole point of the report?

 

[charles shepherd]

And here I am thinking that they are investigating institutional abuse of sick children because it is a grave injustice, not because of the number of "likes" they might get.

Don't be silly - they were doing a serious piece of investigative journalism because they genuinely cared about what has been happening to some children with ME/CFS

But if they also feel that the programme they have produced has been welcomed (rather than just criticised) by the ME/CFS patient community they may well want to return to another aspect of ME/CFS that needs investigating

 

[charles shepherd]

and yet Radio BBC Scotland and Look-east BBC TV (I think it was did coverage of conference in Norwich) managed to do it very well and when they replied to an email I sent to congratulate them they said they had been overwhelmed by the [positive] response.

I have done several programmes for BBC Radio Scotland (Kay Adams) in the past year and they have had a large and very positive audience response - not just from people with ME/CFS.

On the last occasion we had to extend the slot by almost 30 minutes because there were so many calls and emails coming in

CS

 

[Esther12]

I've still not found time to listen to this, but was chatting with someone else who said that they thought it was really good for a BBC programme on ME, but really disappointing if one was expecting a campaigning piece that would blow the lid off the PACE scandal. Expectations will matter when judging something like this.

It's not long ago than some people were expecting this to be a Science Media Centre style-stitch up, and it sounds like it certainly wasn't that.

 

[lilpink]

health journalist who has tried his/her best

The question is: was it his 'best'? If it *was* the case he was censored by powers from above then I'd like to know about that. Otherwise there are question marks about the content given what we know about the personnel he interviewed. If that was his unfettered 'best' then he can't do any better can he? So he isn't much use to us..because we need something with considerably more 'bite'. I'm also curious that journalists feel a need to be 'appreciated'... surely a good journalist searches out and disseminates the truth no matter how difficult that might be and without any sense that he will be congratulated? Appreciation is always a pleasant experience, but if it's the guiding light for investigative journalism I'm really quite concerned.

 

[lilpink]

and yet Radio BBC Scotland and Look-east BBC TV (I think it was did coverage of conference in Norwich) managed to do it very well and when they replied to an email I sent to congratulate them they said they had been overwhelmed by the [positive] response.

I think most patient advocates have likely given up on attempting to correspond with journalists knowing that it's akin to battering their head's against the old proverbial wall. I now only tend to contact journalists to thank them for good reporting..and every now and then, when the moon is full and very blue, we do get good coverage which represents a job well done. I think given the plight we find ourselves in pwme are incredibly polite.

 

[Snowdrop]

The way I think about the tone of the programme is that the presenter cannot just do what he wants. He has to work within the framework of the BBC higher ups. I like to think of this as the chink in the armour that will open the floodgates (uh, I think that too is a mixed metaphor).

We do deserve much more hard hitting reporting. . .but perhaps that is to come and this is the beginning.

 

[Demepivo]

Don't be silly - they were doing a serious piece of investigative journalism because they genuinely cared about what has been happening to some children with ME/CFS

But if they also feel that the programme they have produced has been welcomed (rather than just criticised) by the ME/CFS patient community they may well want to return to another aspect of ME/CFS that needs investigating

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..

 

[AndyPR]

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.

 

[SamanthaJ]

Been pondering about the programme today. I've found it impossible to put myself in the position of a non-ME listener, the material is too familiar. I think my initial reaction was one of slight disappointment because I was expecting to hear from Dr Speight, Jane Colby and Prof Davis, and more about harms from GET. However, I'd also been dreading a contribution from EC, so that was a relief. Although I understand people's criticisms, I think my own feelings now boil down to: Will Team PACE be firing off stern emails to BBC execs? Probably. Do I hope my family, friends, GP etc tuned in? Yes.

 

[Mrs Sowester]

I've emailed the link to a senior social worker I know, I'm hoping to get some independent feedback. I think we may be too close to the subject to see it clearly.

@jimells Joe Sixpack doesn't listen to Radio 4.
The audience for File on 4 will be (and I'm being very stereotypical here) middle class and/or elderly and smarter than average, doctors, teachers, social workers, solicitors and the like. People listen to the repeat on Sunday early evenings after the cricket, while doing the ironing or pottering around the garden.
In short Radio 4 on a Sunday afternoon reaches the people we need it to reach. In my opinion the program was perfectly suited to their listeners.

 

[jimells]

But if they also feel that the programme they have produced has been welcomed (rather than just criticised) by the ME/CFS patient community they may well want to return to another aspect of ME/CFS that needs investigating

Dr Shepherd, I have great admiration and respect for the work you have done and continue to do in spite of dealing with this awful illness. I know that your response to me is not intended to be manipulative.

So please forgive me as I point out that for thirty years we have been told over and over that if we don't show the proper gratitude for an occasional crumb, then the NIH, or the CDC, or the NHS, or the media, or whoever, will take their marbles and go home. I ran out of gratitude for institutional crumbs quite some time ago. I don't plan on getting more.

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?

 

[Chrisb]

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.

 

[jimells]

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.

Sy Hersh just delivered a massive knock-out blow to the Trump Administration's story that Assad attacked civilians with chemical weapons. Why shouldn't we expect the same for the ME scandal?

 

[lilpink]

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?

It's not 'Act Up' exactly is it? Where is the rage?

 

[AndyPR]

Sy Hersh just delivered a massive knock-out blow to the Trump Administration's story that Assad attacked civilians with chemical weapons. Why shouldn't we expect the same for the ME scandal?

Because, presumably, that situation is, and can be represented, in a far more black and white fashion - Assad either attacked, or not, civilians with chemical weapons. The situation with ME is a much more confused one, and much more entrenched. Comparing dissimilar situations and then attempting to draw a correlation between the two is, again, being unfair.

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 because it's beyond my imagination to think of something that convinces all the authorities around the world, in one go, that ME is not psychological, that it deserves immediate and massive research funding, that GET and CBT aren't treatments, that BPS theories are lunacy etc. I'll think you'll agree that is a much more complex job, rather than answering "did Dictator X use chemical weapons on his own people, yes or no?" and providing proof.

 

[Barry53]

Harassed by who - the SMC? Quite understandable.

I guess the important thing is we need not worry, and best now to just say no more and let things take their course.