BBC Radio 4: Children with ME

[TiredSam]

How on earth did this get past the SMC and the PACE authors? We have gone from them controlling the narrative and having the last word in the national media to their views being included in passing for "balance", which is a most encouraging direction of travel.

M.E. is a vast and complicated subject so there's no way everything could be covered to our satisfaction in 40 minutes. Choosing to focus on the shocking abuse sick children and their families have to suffer from doctors, schools and social services is a great place to start. It could have been harsher, including children who have been detained at EC's pleasure and cases like those from the above Nigel Speight talk, but for many listeners new to the subject hearing about a family that has had to move to a remote location and is still being hounded by social services whilst trying to care for their sick daughter will be shocking enough for the time being.

SC did a great job of talking the talk. So why on earth does/doesn't/did/didn't she (fill in the blank about any of her actions/inactions for M.E. over the last few years here). If only a few people would publicly tell EC to **** off (which should be a no-brainer but somehow isn't) I wouldn't be left scratching my head so often that I'm getting a bald patch. Fortunately research into that has been better funded than M.E., so no harm done.

 

[Cheshire]

How on earth did this get past the SMC and the PACE authors? We have gone from them controlling the narrative and having the last word in the national media to their views being included in passing for "balance", which is a most encouraging direction of travel.

M.E. is a vast and complicated subject so there's no way everything could be covered to our satisfaction in 40 minutes. Choosing to focus on the shocking abuse sick children and their families have to suffer from doctors, schools and social services is a great place to start. It could have been harsher, including children who have been detained at EC's pleasure and cases like those from the above Nigel Speight talk, but for many listeners new to the subject hearing about a family that has had to move to a remote location and is still being hounded by social services whilst trying to care for their sick daughter will be shocking enough for the time being.

I agree, it could have been more offensive, and I would have loved to hear Dr Speight, who I really have great admiration for.

But as it is, it is definitively not the broadcast Esther Crawley and the PACE team would have dreamed of, and far from it, which is a real change.

And maybe, at this stage, a balanced (even though as I said the balance is IMO clearly in our favour) view is the only way to get mainstream coverage.

 

[TiredSam]

And maybe, at this stage, a balanced (even though as I said the balance is IMO clearly in our favour) view is the only way to get mainstream coverage.

And at least they didn't go overboard on the balance. They could have included an interview with GETSET Julie (apparently they wanted to but she was away on a hiking trip), a borderline psychopathic M.E. activist, or even a PACE author.

 

[Chrisb]

I thought that the journalist probably did as good a job as reasonably possible within the constraints with which he would have been confronted. I wonder to what extent any discussion of the existence of cases in which courts have actually made orders, which we would see as being contrary to the best interests of the child, is limited by order of the courts. Or perhaps there are no such cases. Who knows?

I was left with the impression that the problems for families are caused by junior and middle ranking, teaching and social work, staff. I think it most unlikely that they act on their own initiative.

 

[Barry53]

I have been procrastinating as to whether to write my feelings about the programme here as I don't want to burst anyone's positive moment.

But To be honest, I felt a bit let down and disappointed. I can see it is progress, a step in the right direction. But a lot missing including professionals such as Jane and Nigel who are the ultimate source of knowledge on all things to do with paediatric ME in this country, particularly with regard to child protection cases, and interview with Ron Davis, and yet Hammond spoke twice. Would we class him as an expert on this? not compared with Nigel certainly.

I just felt that sometime the need to come across as 'balanced' and 'unbiased' can help to disguise the true injustice and impact of a situation. But then I find this the case with a lot of the BBC's reporting.

It felt too weak to me did not portray the full impact, gravity and urgency of the situation, the number of cases, that kids have been and are removed.

Serious harm is being done here and the BBC puts appearing unbiased and balanced before exposing the true extent of the situation.

I am not sure that when evidence wholly discredits a theory and harmful treatment based on myth that you should then treat the myth with impartiality and balance and make that your objective rather than fully and forcefully exposing the myth.

Do we or should we give the same importance and time, in the interests of not appearing biased to the views of terrorists who harm and kill, or should we expose their fase beleifs for what they are?

Same with criminals ..... and same for me with these mythical, thoroughly debunked unscientific practices and theories.

I mean for god sake, if they were doing a program on ritual or voodoo abuse of children would they have to balance the views and practices of those abusers with the parents and children. This is abuse and it is harmful what is happening, it needs to be investigated and treated in the way other child abuse and harm is treated and sorry but I don't want to hear a balance between a child abusers perspective and the child and their family, kind of suggesting there is no right or wrong, its all about balance and being totally unbiased.

Rant over

Understand you worries though not in a situation to digest all but the overall effect over the coming year is what counts. A programme like this can only work if it has 100% credibility, and for that it must show balance. We cannot and must not see it as ME advocacy in the direct sense. It is very good piece of investigative reporting that is good for pwme, and not at all good for the BPS crew, who will be unable to discredit it. Hopefully it will spark enough public interest in ME to allow budgeting for more with wider scope.

 

[Barry53]

How on earth did this get past the SMC and the PACE authors? We have gone from them controlling the narrative and having the last word in the national media to their views being included in passing for "balance", which is a most encouraging direction of travel.

My hope is that there is still a good hard core investigative reporting element left within the BBC, and that maybe they have started to realise what a mockery they have started to look in the eyes of the world. Real professionals would feel deeply embarrassed and ashamed. There is also the fact that the writing is on the wall: somebody somewhere in the world is going to start reporting the real story, and maybe realised better all round for it to be the BBC.

If all my above optimism is not ill-founded, then it just might mean the SMC has lost its grip on the BBC re ME. Hopefully start of a walls of Jericho moment.

 

[trishrhymes]

I still have ringing in my ears the awful fawning interview on BBC radio 4 just a few months ago with Simon Wessely in which he was not just allowed to get away with painting himself as a hero under fire from dangerous militant ME activists, but actively encouraged to do so and to paint us as malingerers.
And the Today program and others fawning all over Crawley and her acolytes in promoting the yet to be started trial with kids with fatigue / CFS as if she was the hero about to save thousands of sick kids with her wonderful new treatment.

In that context I was hugely relieved to listen to a program that took the plight of the children and families seriously and gave a glimpse into the awful injustices being done to ME sufferers, especially children. And to actually have PACE and the NICE guidelines being questioned was a huge step forward.

I see this program as a good step in the right direction and am grateful to the children and families for having the courage to take part, and the doctors and scientists who helped ensure the journalist understood the situation. Even if their contribution wasn't used, I suspect it helped influence the direction of the program. I commend the reporter for doing a decent job in the face of the BBC bias.

Of course I wish it would have gone a step further and made it clear PACE is dangerous discredited nonsense, and should be retracted, and that there is good research showing the biomedical basis of ME/CFS and a desperate need for more research funding.

And I would have loved to hear Ron Davis and others expressing their outrage at the grip the psychiatrists and their poison have on ME in the UK and the way we are treated.

I hope such a program can happen soon, but we will probably have to wait for NICE to be revised (I hope) and a biomedical test to be developed and rituximab or some other drug to be shown to work for some patients. I'm not holding my breath.

 

[Barry53]

How on earth did this get past the SMC and the PACE authors? We have gone from them controlling the narrative and having the last word in the national media to their views being included in passing for "balance", which is a most encouraging direction of travel.

M.E. is a vast and complicated subject so there's no way everything could be covered to our satisfaction in 40 minutes. Choosing to focus on the shocking abuse sick children and their families have to suffer from doctors, schools and social services is a great place to start. It could have been harsher, including children who have been detained at EC's pleasure and cases like those from the above Nigel Speight talk, but for many listeners new to the subject hearing about a family that has had to move to a remote location and is still being hounded by social services whilst trying to care for their sick daughter will be shocking enough for the time being.

SC did a great job of talking the talk. So why on earth does/doesn't/did/didn't she (fill in the blank about any of her actions/inactions for M.E. over the last few years here). If only a few people would publicly tell EC to **** off (which should be a no-brainer but somehow isn't) I wouldn't be left scratching my head so often that I'm getting a bald patch. Fortunately research into that has been better funded than M.E., so no harm done.

Have to be careful scratching your head @TiredSam because you can end up with splinters.

 

[UKmum]

I think there were some real nuggets in the programme.

The doctor Phil Hammond who works in EC's clinics admitted that the medical profession when he was training, viewed CFS/ME as Yuppie flu and a result of people feeling they were not achieving what they had hoped for in life. He expressed this with apology and remorse for the way people have been treated and unambiguously said it is a neurological illness.

The Norwegian research was mentioned- although briefly and talked of a cancer drug being a potential treatment.

PACE was mentioned several times - more than I expected from a BBC programme and the balance did not come down on the authors side.

I like the power of simple understatement and this programme used this to good effect. It was not sensational it simply showed the horror & nightmare of ordinary people doing their best to care for their sick children, being disbelieved and persecuted by the people that should be helping them.

I hope it opens up the doors to more reasonable reporting on the other aspects of the illness.

 

[charles shepherd]

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

 

[Barry53]

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

Yeaah ... The ball is rolling! The BBC do look like they plan to run with this .

Edit: Just realised. TV programme. That will hit a much wider demographic. And the BBC would not be doing unless fully committed. Some very twitchy sphincters in the BPS camp I think. Might even be pondering about all their stuff in the public domain the BBC may be trawling through at this very moment.

 

[arewenearlythereyet]

I would just like to add to everyone else's comments that I found this a well balanced programme that got to the heart of the subject (as far as it could within the time). It clearly picked up elements of cover up and "no comment" and the detrimental effect that these cases have had on the health of the children which the "system" is supposed to protect.

I think trying to cram all of the issues we all would like into the 40 min would have made for a far less powerful and balanced report. By reporting specifically we get a far better coverage of all the issues, providing we can get a few more issues discussed?

If we can get reporting of this calibre for the other subjects (lack of diagnostic criteria, poor GP understanding and stigma, discrimination in the workplace, the role of the DWP and insurance companies in suppressing and discriminating against the sick. Biomedical research etc) we can start painting the truly dispicable story.

I'm now feeling hopeful that we may get some more coverage on the back of this programme.

 

[Valentijn]

How on earth did this get past the SMC and the PACE authors? We have gone from them controlling the narrative and having the last word in the national media to their views being included in passing for "balance", which is a most encouraging direction of travel.

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

 

[TiredSam]

Have to be careful scratching your head @TiredSam because you can end up with splinters.

Don't worry, I wasn't scratching it with a fence post.

 

[arewenearlythereyet]

If the bald patch gets to big, you can always try my new range of stick on man buns ...it's the more fashionable alternative to a comb over

 

[TiredSam]

If the bald patch gets to big, you can always try my new range of stick on man buns ...it's the more fashionable alternative to a comb over

I had to google that - been out of the UK for too long. Ok yes please I'll have one.

 

[TillyMoments]

They had a lot more with Jane Colby and Dr Speight so it could have been stronger. SC wiped Jane out who has supported and helped out with and is one of the Mothers I have helped support so having SC comment has made me a little angry. But having the two girls feature in most of the program was the best we could hope for, I guess? The two charities have signed EC Charter?

 

[slysaint]

Also a bit odd that SC has been doing all the talking given:
"AYME’s Chief Executive Mary-Jane Willows will take up the position of Head of Children’s Services with us," and that this mistreatment of parents and children was happening under her watch as CEO of AYME.
But then one of the 'perps' was their Medical Advisor.............something for another program maybe?

 

[lilpink]

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

I know we're supposed to be impressed by the notion of 'balance' but to me the 'balance' happens when the journalist investigates every aspect of a topic and then presents the truth of that topic..it doesn't mean necessarily giving equal measure in the time/ coverage sense in the eventual broadcast to both sides especially where it is very evident that one side is speaking the truth and the other isn't. What you get then is a 'void' ...almost as if noise cancelling headphones have been applied... a sort of 'nothing' ensues.


I agree it is hard for us to disassociate ourselves knowing everything we know, but Matthew Hill interviewed a lot of people. The testimony of the two FII mothers and that of the daughter via the voice of an actor, plus the testimony of the advocate (I think it was their MP?) who worked on behalf on the one family was powerful, but we didn't have anyone in our corner to speak for us in an 'official' / non patient capacity who wasn't tarred in some way with the BPS brush.


'Our' spokespeople were Charles Shepherd who still can not disentangle himself from the CMRC which is Esther's baby; Phil Hammond who works alongside EC in Bath & Sonya Chowdry who is another EC puppet. In terms of front line advocates / charity representatives it is untenable that a programme about this issue (which remember is largely of Esther Crawley's doing as she has bequeathed her very particular brand of paediatric ME 'care' to other facilities around the UK) should not interview and broadcast Nigel Speight (who we know has been an expert witness in many of these FII cases) nor Jane Colby (who has a terrier of all the cases that had to go through child protection measures and from which she could speak knowledgeably, and in any event she leads the only paediatric patient charity in the UK at the moment). What we do get is Hammond talking about 'neurological' ... this is one of the 'crumbs' that I find so offensive because (as I have moaned on and on in the past) it is these crumbs for which we are supposed to be thankful like victims of Stockholm syndrome happy to get the merest morsel from the table of our oppressor. Phil Hammond works with Crawley in the Bath unit for children with ME (http://me-pedia.org/wiki/Phil_Hammond) so unless he makes a volte face and decides to throw Esther under the bus him saying ME is neurological means nothing given the care packages they chose to use based on a fear avoidance paradigm (or a child abuse by parent paradigm). As far as I know no other neurological disease has only two treatment options available both of which are behavioural. So his claim is empty.


I was also curious about his mention of poor people being more likely to contract ME. I would love to the see the epidemiological studies that can point to this whilst also using criteria that can actually identify authentic ME. It rings bells which bring to mind the now infamous Esther Crawley / libeling of Dave Tuller Renal Conference where she used a picture of what was later found to be an Armenian family (none of whom as far as anyone is aware had ME) to illustrate the 'poor' demographic, along if memory serves (and it has to as someone made sure un-cached tweets were removed pronto) with the notion young people with ME were more likely to use drugs or be delinquent (i'm happy to be corrected if that isn't quite right). So why do we have Phil Hammond giving us information to the effect ME is 'neurological' when his practice does not bear that out and when we know (from photographic evidence) that Matthew Hill interviewed Ron Davis (who has an international reputation and is doing the sort of work Phil Hammond can surely only dream about) but Ron Davis wasn't even mentioned?



And talking about someone who wasn't even mentioned (and observed by others who listened to the programme) why was the name 'Esther Crawley' not mentioned once? Why the huge elephant in the room? Esther Crawley , who holds herself up as being one of the most influential paediatricians treating and researching ME in the UK today (http://www.bristol.ac.uk/.../esther-m-crawley/index.html) and who is the architect of the behavioural treatment approaches used on children and young people with ME in this country at this moment in time was NOT anywhere to be seen. Was she interviewed? If not why not? Did she refuse? Did she perhaps refuse because she knows any quick Google search of her name would lead to a litany of accusations tabled against her and such high profile tagging would draw attention to these acts? Phil Hammond was essentially her wing-man... there to do her 'bit'..to make the Bath service look kosher (he's that comedian off the telly, surely he can't be involved with anything dodgy?), to make that paradigm seem cosy and safe and sensible and not at all what we really know it to be.

 

[lilpink]

no. But please could you split your post.

I did and it concertina-ed..I'll try again ..make bigger gaps!