BBC Radio 4: Children with ME

[Mrs Sowester]

Yup, it was a many tissue program. Still weepy now.
Such hopeful news re. NICE and PACE's death throws.
Very glad I listened.
It's difficult to listen to the BPS view put forward at all, but the Beeb has to be balanced and the program did definitely come down on our side.

I don't think anyone of us pwme have avoided disbelief. I had to prove myself to be genuinely physically ill, in doing so I made myself worse. I knew I should have been resting (and not going for walks till my fingers went blue or my knees buckled) but the people around me just couldn't accept my word.
My daughter's onset was about a year or two after my own, fortunately she was 21, but she still faced disbelief. People assumed she was just imagining she had ME because I have it, but I knew she had it too because she was complaining of symptoms I hadn't told her about. I was able to fight for her and help her avoid my mistakes. I'm grateful for that.
Knowing how much I want to protect my adult daughter makes my heart go out to the parents like those in the program. And those poor children, to have such a cruel, lonely illness and be abused by the system that is supposed to protect them, its just so awful, so very terrible. There just aren't the words.

 

[Barry53]

Yup, it was a many tissue program. Still weepy now.
Such hopeful news re. NICE and PACE's death throws.
Very glad I listened.
It's difficult to listen to the BPS view put forward at all, but the Beeb has to be balanced and the program did definitely come down on our side.

I don't think anyone of us pwme have avoided disbelief. I had to prove myself to be genuinely physically ill, in doing so I made myself worse. I knew I should have been resting (and not going for walks till my fingers went blue or my knees buckled) but the people around me just couldn't accept my word.
My daughter's onset was about a year or two after my own, fortunately she was 21, but she still faced disbelief. People assumed she was just imagining she had ME because I have it, but I knew she had it too because she was complaining of symptoms I hadn't told her about. I was able to fight for her and help her avoid my mistakes. I'm grateful for that.
Knowing how much I want to protect my adult daughter makes my heart go out to the parents like those in the program. And those poor children, to have such a cruel, lonely illness and be abused by the system that is supposed to protect them, its just so awful, so very terrible. There just aren't the words.

I think the 'side' it came down on was that of truth and decency, which inevitably heavily favours pwme. As I've said before, our most potent weapon is the truth, the whole truth, and nothing but the truth. So long as the BBC exposes that then the rest will just drop into place.

 

[Keela Too]

Just listened... on the whole it was good. Much better than expected.

 

[PeeWee]

I found this a very moving presentation of what must be an unbelievably awful situation for the families involved. Its balanced presentation of the GET / CBT / PACE issues was refreshing (how often has that happened before in mainstream UK media?)

The news that the NICE are reviewing their guidelines because of / in the light of queries about the PACE trial / GET is really encouraging.

Maybe some sense will enter the Looking Glass world!

 

[Molly98]

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

 

[Hilary]

On the whole I thought it was good and a vast improvement on the rubbish that has been churned out by the British media for so long.
I need to re-listen as my mind has already gone to bed (ahead of the rest of me..) but one comment I do recall towards the end was something said by Prof Mark Baker (NICE bigwig - forget his official title) about it being difficult to
know how to move forward (or words to that effect). How about turning up to highly prestigious international bio-medical conferences, held right on your doorstep, to start with?

 

[charles shepherd]

On the whole I thought it was good and a vast improvement on the rubbish that has been churned out by the British media for so long.
I need to re-listen as my mind has already gone to bed (ahead of the rest of me..) but one comment I do recall towards the end was something said by Prof Mark Baker (NICE bigwig - forget his official title) about it being difficult to
know how to move forward (or words to that effect). How about turning up to highly prestigious international bio-medical conferences, held right on your doorstep, to start with?

I have spoken to Matthew this evening after transmission to let him know that there have been a lot of positive (or very positive) comments about the programme on the internet discussion forums.

CS

 

[TiredSam]

one comment I do recall towards the end was something said by Prof Mark Baker (NICE bigwig - forget his official title) about it being difficult to
know how to move forward

That is such an easy one to answer - ask the patients.

 

[MeSci]

You can send feedback about the programme to Feedback: http://www.bbc.co.uk/programmes/b08v8vgp

 

[Gday]

Just listened to the radio 4 programme and sat here in tears. It's so sad how misunderstood this illness is. I thought the tone was really good and sounded hopeful that PACE was on its knees and NICE may be revised. Well done to all involved.

Very disappointed in this program. There was no mention of biomedical science and the work of invest In ME, the scale of the medical abuse was totally ignored, R Hammond was the only Professional who was allowed to talk , no mention of Dr Speight or any other paediatrician, the complete medical ignorance and failure to practice safely with children was ignored. Pace was glanced over, pushing of a psychiatric agenda with children with no mental health problems. The hypocrisy of Sonya Chowdrey who has worked so closely with Ester Crawley who initiated many of the child protection cases is not lost on parents!! It did not convey the severity of the condition.

 

[.Chris.]

I listened to this earlier. It was a good programme that covered most of the main points in a fair way. Yes, it would have been nice to have had more coverage of the biomedical evidence and a more thorough explanation of the problems with the PACE trial (et al) but time is limited and the main focus of the programme was the issue of child protection proceedings and 'FII'. The only slight factual query I had was about how Mark Baker's e-mails were presented - if my memory serves me correctly didn't he get caught saying one thing to the Forward-ME meeting and something rather different (and less positive) in private?

All in all it was a vast improvement over what one usually hears on Radio 4 about ME. Thanks to all who contributed.

 

[SamanthaJ]

I think most of the contributors spoke well, particularly 'Jane' and the two amazing mums. To be accused of harming your child when you are protecting them from harm and doing your best to care for them... They did a brilliant job of communicating the horror of the situation, and the reality of the disease. Thank you for your courage in speaking out. Wishing all the families involved the very best.

However, I'm left with the uneasy feeling of an elephant in the room - a certain leading paediatric CFS 'expert', who, unlike school nurses and social workers, does not have the excuse of being ignorant of ME. Hope File on 4 can follow this up. Would like to hear from Dr Speight, disappointed he was not used here, when he's the expert on this whole issue. It strikes me it must be difficult for journalists to unravel the double-dealing that's going on, but I hope they try.

 

[Tally]

and interview with Ron Davis,

Was this the interview he gave in London during iIME conference? So they just wasted his time?

 

[charles shepherd]

I listened to this earlier. It was a good programme that covered most of the main points in a fair way. Yes, it would have been nice to have had more coverage of the biomedical evidence and a more thorough explanation of the problems with the PACE trial (et al) but time is limited and the main focus of the programme was the issue of child protection proceedings and 'FII'. The only slight factual query I had was about how Mark Baker's e-mails were presented - if my memory serves me correctly didn't he get caught saying one thing to the Forward-ME meeting and something rather different (and less positive) in private?

All in all it was a vast improvement over what one usually hears on Radio 4 about ME. Thanks to all who contributed.

This is a link to the FoI exchange of correspondence that Matthew referred to. It involved a discussion of a possible revision of the NICE guideline between Prof Mark Baker at NICE and Dr McShane at NHS England:

Internal correspondence (obtained using an FoI) between NHS England and NICE in relation to a revision of the NICE guideline on ME/CFS:
http://www.meassociation.org.uk/201...eedom-of-information-request-24-october-2016/

When we met Prof Baker at the House of Lords (at an earlier date) we were left with the firm impression that he accepted the case for a NICE guideline review.

Minutes for this meeting - which were checked as being correct by Professor Baker before publication:

http://www.meassociation.org.uk/201...statement-by-the-me-association-10-july-2014/

CS

 

[Esther12]

I've not listened to this yet, but in a short programme, we can't expect them to cover all the things that we want them to. Especially as 'we', as a group, often have quite different views amongst ourselves about what should be prioritised. If they're covering any ME/CFS issue competently, that's a great step forward.

 

[charles shepherd]

I think most of the contributors spoke well, particularly 'Jane' and the two amazing mums. To be accused of harming your child when you are protecting them from harm and doing your best to care for them... They did a brilliant job of communicating the horror of the situation, and the reality of the disease. Thank you for your courage in speaking out. Wishing all the families involved the very best.

However, I'm left with the uneasy feeling of an elephant in the room - a certain leading paediatric CFS 'expert', who, unlike school nurses and social workers, does not have the excuse of being ignorant of ME. Hope File on 4 can follow this up. Would like to hear from Dr Speight, disappointed he was not used here, when he's the expert on this whole issue. It strikes me it must be difficult for journalists to unravel the double-dealing that's going on, but I hope they try.

Dr Nigel Speight, who is paediatric adviser to the MEA, provided background information and was interviewed for the programme - as were a number of other doctors

I'm sorry too that his comments were not included because it clearly would have been helpful to have included some expert comment from a consultant paediatrician who has dealt with a number of child protection cases

CS

 

[charles shepherd]

I've not listened to this yet, but in a short programme, we can't expect them to cover all the things that we want them to. Especially as 'we', as a group, often have quite different views amongst ourselves about what should be prioritised. If they're covering any ME/CFS issue competently, that's a great step forward.

Yes, there is a limit to what you can pack into a 40 minute programme covering both child protection issues and controversies surrounding the PACE trial when a significant proportion of the programme had to be devoted to actual case histories from children with ME/CFS and their parents

This was not a programme about biomedical research into ME/CFS - the focus was on controversies surrounding management

CS

 

[daisybell]

@charles shepherd do you know if any follow-up programme is planned?
They must have a wealth of good material that hasn't been used, and it would be great to hear another segment expanding on this one and giving further information on research etc..

 

[charles shepherd]

@charles shepherd do you know if any follow-up programme is planned?
They must have a wealth of good material that hasn't been used, and it would be great to hear another segment expanding on this one and giving further information on research etc..

There are no plans at present to do a follow up programme

But there have obviously been discussions about other ME/CFS related issues that need to be investigated - need for more biomedical research, problems with benefits etc

I have known the reporter for many years and worked on a number of health items with him (not all are connected to ME/CFS) - so I think there is a good chance that there will be further programmes from this source covering ME/CFS

Matthew has also done a BBC TV Panorama programme on children with ME/CFS in the dim and distant past:

http://news.bbc.co.uk/1/hi/programmes/panorama/archive/506549.stm

Matthew Hill CV:

http://www.bbc.co.uk/pointswest/content/articles/2006/10/18/matthewhill_feature.shtml

 

[Countrygirl]

Such a shame Nigel was edited out and there was no mention of how a certain paediatrician enforces rigorous physiotherapy, against the parent's will and that of the child until that child is paralysed. At least we are grateful that EC didn't speak. Is it known if she was interviewed or has Holgate decided his best buddy's mouth cannot be trusted in an interview as it has a tendency to run riot making claims to fabricated nonsense?Perhaps just as EC and her chums have gagged the most abused parents into silence, maybe her very, very best friend has told motor mouth to zip it before she brings their empire crashing down about their ears.

Here is a link to a recent talk by Dr Nigel anyway