BBC Radio 4: Children with ME

[Esperanza]

Oh dear.... so I'm in the minority again am I?

No, you are not in the minority.
I agree totally & think the programme, good in parts could have been much better & was a missed opportunity. Why on earth did the journalist go to interview researchers at the Invest in ME conference if he wasn't going to hammer home the fact that there is a lot of emerging evidence that ME is a physical disease....

 

[trishrhymes]

Hi @lilpink.

I have a lot of sympathy with what you say, but I also think the program was a vast improvement on anything the BBC has done on ME before, and am grateful for that. It's a good first step.

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.

I would not want to put off a reporter doing his best to fit into 40 minutes the complexities of the issues and to give enough space to the families to tell their stories. I am so moved by their willingness to do so, and I think listeners will have been moved and troubled.

I want to see PACE and Crawley and all the other people who are ruining lives stopped as much as you do.

 

[lilpink]

grateful for that. It's a good first step

I'm not being rude to you per se..and apologies if this sounds rude.. but this is what I rage against. We shouldn't be grateful. It's a crying shame that we are suffering as we are at the hands of these people and the so called free press will not do this topic the service it deserves. I'm not grateful for this....it was weak. The story was not told. I'm grateful for people who move mountains ..like Tuller who says it as it really is. Why are we so happy to accept so little? I never will be...

 

[A.B.]

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

@Jonathan Edwards if you have not been contacted by the BBC for an interview on this, please contact them. We could really use a professor of medicine pointing out the problems with PACE, as well the need for a reform of science in this area.

 

[trishrhymes]

I'm not being rude to you per se..and apologies if this sounds rude.. but this is what I rage against. We shouldn't be grateful. It's a crying shame that we are suffering as we are at the hands of these people and the so called free press will not do this topic the service it deserves. I'm not grateful for this....it was weak. The story was not told. I'm grateful for people who move mountains ..like Tuller who says it as it really is. Why are we so happy to accept so little? I never will be...

It's fine, not rude at all, part of me totally agrees with you. If I had the energy I'd be in a rage with the BBC and all the British media for being so spineless and dumb and irresponsible for not seeing and shouting out about the injustice we have suffered at the hands of the BPS idiots for 30 years. But I'm also glad those families were given the chance to tell their story. It's not enough, but it is something.

 

[Barry53]

Perhaps a certain SMC turd has finally been removed from the BBC punch bowl?

Now there's an image for you .

 

[Londinium]

I understand that some might feel the programme didn't go far enough, but let's still celebrate that this is real, tangible progress. A respected BBC radio documentary and, per @charles shepherd, a planned TV programme on PACE, which should hopefully make the concerns and criticisms around the unsubstantiated claims around BPS treatments reach a more mainstream audience in the UK. Rome wasn't built in a day and (to mix metaphors) the facade is crumbling.

 

[lilpink]

so I don't think even he could understand why the authorities apparently ignored the childrens diagnoses.

I think Matthew Hill understood the situation very well. After all he is a veteran of ME related coverage. I will give him the benefit of the doubt that his inclinations are likely in the right direction, but I sense he was being limited in what he was allowed to say. That being so I felt not only did he sadly pull his punches, but if anything was to be found languishing in the corner with a towel over his head (in my opinion at least). That old Edmund Burke chestnut, "The only thing necessary for the triumph of evil is for good men to do nothing". Hill might be a good man but we know the calibre of the people with whom he spoke and so we know he will have been given chapter and verse on what really is happening with these children. There is no doubt about that. So we have two points in time: i) where he acquires good evidence of truly awful crimes against innocent children and their families and ii) where he fails to disseminate that he knows this stuff. It's up to us to judge. If he has the cahoonas he'd 'go rogue' on social media and break this open. It would make his name, but also sadly probably lose him his job.

 

[Barry53]

It's fine, not rude at all, part of me totally agrees with you. If I had the energy I'd be in a rage with the BBC and all the British media for being so spineless and dumb and irresponsible for not seeing and shouting out about the injustice we have suffered at the hands of the BPS idiots for 30 years. But I'm also glad those families were given the chance to tell their story. It's not enough, but it is something.

If this proves to be the BBC's sole effort then I will be disgusted, but I think it just might be the beginning, especially as there is a TV programme on PACE on the way. I am above all a pragmatist and am invariably drawn towards the most effective options overall. If it turns out the BBC is now going to expose the true, the whole truth, and nothing but the truth about ME then I'm not going to knock it - they are by far best placed to do so. For the moment at least I will swallow my anger with them and just hope they now belatedly start doing the right thing.

Also, we speak of 'the BBC' but internally I'm sure it is full of factions and inter-rivalries. I very much doubt the SMC brigade are any different now than they have been, and suspect that instead there may instead be a group of more dedicated professional investigative journalists who, by definition, will know what a incestuous dogpile the SMC/BBC relationship is. The shenanigans going on behind the scenes are probably something to behold.

 

[lilpink]

The shenanigans going on behind the scenes are probably something to behold.

I imagine not a truer sentence has ever been written on PR

 

[bullybeef]

When I saw the BBC News article, I instantly tried to find it from the Home page: http://www.bbc.co.uk/news/uk-england-40407174
Give it a try.

Eventually, I discovered it buried in the local Bristol section - home of AfME. So why would they expose something so terrible without really advertising it? Perhaps BBC Bristol/AfME wish to control the narrative before someone else does?

We do have to be mindful UK Govt quangos are party to ME misinformation (DWP, NHS, DoH, MRC, SMC etc), and the Beeb are a Govt Corp. Even the 'free' press have towed the party-line. Perhaps we're witnessing a firefighting exercise before it uncontrollably spreads.

It reminds me of regional news report about Sophie Mirza's cause of death. For PWME it is huge story which only reached the local area:

 

[Valentijn]

Perhaps BBC Bristol/AfME wish to control the narrative before someone else does?

I seriously doubt AfME has control over any part of BBC.

 

[Barry53]

No, you are not in the minority.
I agree totally & think the programme, good in parts could have been much better & was a missed opportunity. Why on earth did the journalist go to interview researchers at the Invest in ME conference if he wasn't going to hammer home the fact that there is a lot of emerging evidence that ME is a physical disease....

The programme was 40 mins long with a single message to get clearly across - parents of children with ME are being falsely accused of misrepresenting their kids' illness and threatened with sanctions. Probably the single most poignant message that the innocently uninformed public will suddenly stop and listen to. If the public are going to be re-educated it will need a whole series of tightly focused programmes, each one with a single digestible message. If you chuck everything into the first 'lesson' then you've shot yourself in the foot before you start - educating the public is the goal, not confusing them. This programme was not for our consumption (who already understand so much) but for the general public (who understand very little but misunderstand so much), and this programme was well pitched to begin a process of enlightenment. Important we remember that.

 

[charles shepherd]

I have updated my comments on the prog on the MEA website

These comments can also be used when we are contacted by other journalists who want to follow up the BBC investigation into child protection issues and controversies surrounding the PACE trial

Dr Charles Shepherd on the BBC 'File on 4' programme:

"I would personally like to thank Matthew Hill and the BBC for making the programme and to all the families who took part. I thought it was an excellent programme that exposed a very worrying trend in inappropriate child safeguarding measures, based in a great many cases on professional ignorance of M.E."

"Having assisted Matthew Hill with background information on the history and causation of ME/CFS, and the controversies surrounding the PACE trial, I thought he did a really good job in explaining the complexities of the situation that faces far too many parents of children with ME/CFS who are not willing to comply with medical advice regarding the use of CBT and GET that they disagree with. As a result the parents can easily end up being threatened with completely unwarranted child protection proceedings."

"I have also been at meetings over the past few months with representatives from the General Medical Council, Royal College of General Practitioners and met Mrs Isabelle Trowler (Chief Social Worker for children and families) to discuss ways of improving education and knowledge of ME/CFS amongst health and social care staff."

"However, in light of the BBC programme, it is very clear that much more is needed to be done to improve professional awareness and education about M.E. and end the ignorance about this serious neurological disease."

Updated: 28 June 12:57pm

 

[charles shepherd]

The programme was 40 mins long with a single message to get clearly across - parents of children with ME are being falsely accused of misrepresenting their kids' illness and threatened with sanctions. Probably the single most poignant message that the innocently uninformed public will suddenly stop and listen to. If the public are going to be re-educated it will need a whole series of tightly focused programmes, each one with a single digestible message. If you chuck everything into the first 'lesson' then you've shot yourself in the foot before you start - educating the public is the goal, not confusing them. This programme was not for our consumption (who already understand so much) but for the general public (who understand very little but misunderstand so much), and this programme was well pitched to begin a process of enlightenment. Important we remember that.

Thanks for this helpful comment

I think that some of the criticism of the programme on PR is not taking account of the fact that:

(1) when the BBC produces an item of serious investigative journalism that criticises individuals or organisations they are normally given the right of reply - which is why the programme kept stating that xx had been asked to comment but declined to do so because xxxxx

and

(2) this programme was aimed at the general public - who know little or nothing about child protection issues, the PACE trial, and GET. All the feedback I have had from people who are not affected by ME/CFS has been one of surprise or concern about the content and they fully understood the message that was being made…..

I have discussed the programme with Dr Nigel Speight (who is MEA paediatric adviser), Jane Colby (whom we work with very closely at Tymes Trust) and David Tuller (who has been to stay with us here in Glos) and they were all involved in the preparation and were interviewed - as were a number of other health professionals. I do not know why it was decided to omit their actual interviews. But I do know that the BBC had far more recorded material 'in the can' than they could possibly fit into a 40 minute slot

CS

 

[Londinium]

The programme was 40 mins long with a single message to get clearly across - parents of children with ME are being falsely accused of misrepresenting their kids' illness and threatened with sanctions

And whilst the BBC can sometimes be criticised for being too balanced ("let's give equal time to somebody who represents 97% of the scientific community's opinion and a climate change denier") it's often instructive to look at who gets the final word. In this case it was one of the parents talking about her wishes for her daughter and the discrimination she faces. To me, it was quite clear where the documentary's sympathies lay and the quiet, factual approach taken made it all the more powerful.

So, for me, I am wary of us saying we're disgusted or bitterly disappointed that the programme didn't go far enough - PwME need as many allies as we can muster and it's clear we have at least one open-minded friend at the BBC. Thanks also to the various people on here who helped provide information and interviews to help make this happen.

 

[Barry53]

Didn't like it when the parent of Ila (?) was saying they were being accused of making it all up (or words to that effect) and the presenter asked 'And are you?'

Like it or not it is good reporting. He has to ask that else all credibility is shot, because it is the obvious question waiting to be asked. And if he did not ask then listeners would never have got to hear the mother's answer in her own words, which was a powerful part of the overall message. The programme was not targeted at our sensitivities but public education, and I am hugely encouraged by that. They can no more be a sop to us than to anyone else.

 

[Barry53]

All the feedback I have had from people who are not affected by ME/CFS has been one of surprise or concern about the content and they fully understood the message that was being made…..

It did it's job well then.

I also imagine the journalists effectively build up a buffer stock of material as they go, and the sequence of acquisition not the same as sequence of usage. I imagine the unused material to date must be giving lots of food for thought for further use and lines of investigation.

 

[TiredSam]

Sometimes it can be more effective to underplay your hand. If Matthew Hill had made the argument that the PACE Trial is a complete pile of crap, he would have got embroilled in all kinds of arguments with all kinds of people and had to give a right of reply to the PACE authors, amongst others.

If he instead he makes the argument that patients should be allowed to accept or decline any treatment without coercion, he can sidestep the issue of whether the PACE recommendations are an effective treatment or not and doesn't have to get into an argument with the authors or their supporters because it doesn't matter how good or bad the PACE Trial recommendations are - even if they are wonderful, patients have an absolute right to decline. This allows him to focus on a more simple message (patients being allowed to accept or decline any treatment) and he only has to ask local authorities or schools for comment. At least the PACE trial was described as "disputed", and not just by a minority of vexatious patients. Any stronger than that and he'd have had to invite the authors for comment.

Same with whether to use David Tuller, Nigel Speight, Jane Colby or Sonya Chowdhury. The BPS crew can easily claim that David Tuller has been a libellous vexatious adversary, Nigel Speight's views are well known and he was suspended by the GMC, etc - but Sonja Chowdury? Criticism coming from her is much harder for them to disagree with and she is the person they are least likely to be able to start a public spat with. Wouldn't we just love it if they did.

Same with whether to interview families of kids who have been locked up - in those cases a diagnosis will have been made, and whoever made it will have a right of reply. Instead we had normal families who were being chased and harrassed, which is much easier for a general listener to identify with.

Of course the above is pure speculation on my part, but I'm sure Matthew Hill will have given a lot of thought to how to best get his message across, and the tactical factors he considered when choosing the most effective way may not be ones that are immediately obvious to us.

In my opinion we have to allow him a free hand to make whatever editoral decisions he sees fit. At the end of the day he got us 40 minutes on national radio that came across as balanced and fair (much too balanced from our perspective, but it was addressed to the general listener) and publicised an extremely concerning issue that many listeners will have been completely unaware of.

 

[Barry53]

@Jonathan Edwards if you have not been contacted by the BBC for an interview on this, please contact them. We could really use a professor of medicine pointing out the problems with PACE, as well the need for a reform of science in this area.

I would reiterate this. I do feel that @Jonathan Edwards especially would be a hugely beneficial contributor. I also feel it would be hugely disappointing if the BBC's own research failed to identify this anyway.