I guess this is one of the key benefits of holding these high profile conferences in the UK, attracting so many of the world's eminent scientists. Highly newsworthy for all the right reasons, and maybe attract some really high calibre journalism; so desperately needed here in the UK.
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BBC interview with Ron Davis
- Thread starter Helen
- Start date
Ashley has described just how it is. Day after day night after night. Imagine what this does to the psyche. Thanks Ashley for conveying it so well.
Ash
aka @smashman42 'SortaDerpy' on Twitter
- Messages
- 57
Unless he specifically wanted horrified Americans saying the UK system is barbaric, what you've said and what Janet said don't match up very well at all, almost like there are two BBC reporters?
My friends’ daughter, now 17, has had cfs since she was about 12. The girl’s father is a senior BBC Radio producer. I’ll send him Janet’s post - perhaps the BBC would like to include the perspective of a senior BBC ‘lifer’ in their programme.
Elle & I loved yesterday’s conference – our first. The number of iconic figures and sheer weight of global brainpower assembled in one room, working together to beat cfs was breath-taking and we left so hopeful - though Elle was so shattered I thought she might pass out on the tube … but she wouldn’t have left before hearing Ron. And Ron was so worth the wait.
That the conference happened in the UK and we could actually be at it was amazing. When we heard the BBC were interviewing Ron it really seemed there might be a light at the end of the nightmare that is cfs in the UK. How naïve. I’ve been at lesser conferences about different matters over the years which have attracted so much more publicity. We had all these world-leading researchers in one easy to reach central London location and it’s not UK news. The only media I heard about was this BBC interview – which turns out to be for a programme about children being taken from parents who won’t accept that they should be subjected to therapies that could cause them very serious harm, approved on the basis of a study that surely even here must now be accepted as having been completely discredited.
But yesterday was wonderful - don't let anything detract from that.
Elle & I loved yesterday’s conference – our first. The number of iconic figures and sheer weight of global brainpower assembled in one room, working together to beat cfs was breath-taking and we left so hopeful - though Elle was so shattered I thought she might pass out on the tube … but she wouldn’t have left before hearing Ron. And Ron was so worth the wait.
That the conference happened in the UK and we could actually be at it was amazing. When we heard the BBC were interviewing Ron it really seemed there might be a light at the end of the nightmare that is cfs in the UK. How naïve. I’ve been at lesser conferences about different matters over the years which have attracted so much more publicity. We had all these world-leading researchers in one easy to reach central London location and it’s not UK news. The only media I heard about was this BBC interview – which turns out to be for a programme about children being taken from parents who won’t accept that they should be subjected to therapies that could cause them very serious harm, approved on the basis of a study that surely even here must now be accepted as having been completely discredited.
But yesterday was wonderful - don't let anything detract from that.
sarah darwins
Senior Member
- Messages
- 2,508
- Location
- Cornwall, UK
That's good to hear. It seems perhaps the problem was that Prof Davis was under the impression he was to be interviewed about his work and was taken aback, understandably, to find himself being asked about child protection issues etc in the UK.
But we've often said that there's a big story here, and from what you way it sounds like someone has cottoned on. Fingers crossed.
Personally I think the approach here in the UK is part of a bigger picture which includes a running down of services offered on the NHS. I think there will be/is a move to class a lot of illnesses under the medically unexplained symptoms banner for one reason - to save money. ME/CFS was the dry run and now it will be expanded.
People with endometriosis will be classed as having chronic pelvic pain and prob won't end up being investigated or diagnosed with endo, I know of people with classic autoimmune symptoms not being investigated so they'll be pulled into MUS diagnosis I could go on and on - I heard of someone who had fractures the other day being told it was probably nothing. This is about our health service being run into the ground and the withdrawal of anything but the most basic services. In my mind you cannot separate the story of ME here in the U.K. from that overall political picture.
bullybeef
Senior Member
- Messages
- 488
- Location
- North West, England, UK
Having reread Janet's post and the BBC journalist's initial question, it does support an investigation into Child Protection Cases - May I ask Dr Shepherd whether Jane Colby/Thymes Trust is also involved?
Obviously, such a opening and probing question is enough to raise the hackles of anyone involved, especially the parent of someone with ME. Perhaps such a question was enough to receive the disgusted responses it deserved, which may have been the point.
If the BBC are really looking into exposing these barbaric, draconian actions occurring in the 21st century, based upon institutionally flawed science/policy, I'm sure Dr Davis & Co replied with the responses and evidence to reinforce how wrong it is.
Good to hear we the outcome of the investigation will be broadcasted soon.
All this being said, we are accustomed to being once bitten, twice shy, however, as much as the media can initiate smear campaigns and easily alter public perception, an honest media, reporting factual science can also save us.
David Tuller is one example.
Yes, it did occur to me after posting yesterday, that a good journalist's interview approach might be to ask off-beat, maybe disturbing, questions in order to get real unaffected responses.
slysaint
Senior Member
- Messages
- 2,125
I've just checked and I'm a bit puzzled by this whole interview thing. According to this:
InvestinME Research@Invest_in_ME Jun 1
InvestinME Research Retweeted OpenMedicine OMF
arranged on the hoof by Invest in ME Research - bringing several researchers to the interview to show real science behind research into ME
InvestinME Research added,
OpenMedicine OMF@OpenMedF
Dr Davis being interviewed by the @BBCNews over lunch! @Invest_in_ME #IiME #MECFS
So the interview was organised by IiME presumably on the understanding it was about the science.
InvestinME Research@Invest_in_ME Jun 1
InvestinME Research Retweeted OpenMedicine OMF
arranged on the hoof by Invest in ME Research - bringing several researchers to the interview to show real science behind research into ME
InvestinME Research added,
OpenMedicine OMF@OpenMedF
Dr Davis being interviewed by the @BBCNews over lunch! @Invest_in_ME #IiME #MECFS
So the interview was organised by IiME presumably on the understanding it was about the science.
NelliePledge
Senior Member
- Messages
- 807
Unless I've misremembered I think Janet Dafoe mentioned in her summary that there was also a parent of a child/children with ME involved in the interview
nasim marie jafry
Senior Member
- Messages
- 129
No one more critical than me of the blinkered, shoddy, inflammatory way UK health editors have historically reported on ME, brilliant if someone is finally digging deeper. I can understand Ron Davis must have wondered what on earth was going on with a child protection Q, but the plight of children w ME is scandalous in UK - and crucial that it is finally being addressed. What this thread demonstrates is that we should - none of us - jump to conclusions until we know the full facts. I include myself in this!
Ysabelle-S
Highly Vexatious
- Messages
- 524
I certainly hope this interview is related to the appalling treatment of children with ME. I live in Scotland where reporting on this issue has been better, but where the BBC on political issues has a terrible reputation for bias, and much lower levels of public trust. So if this reporter is dealing with the issue of the terrible treatment of kids with ME, good on him and his team.
Murph
:)
- Messages
- 1,799
Asking a provocative question is often good practice for a journalist.... A good radio reporter needs to record answers delivered with feeling, so adopting a controversial tone of questioning is probably akin to doing your job professionally.
Sure sounds like Ron was provoked! It might have been nice to also set him at ease later that the piece was going to be balanced, if that is the case. I look forward to seeing the final product and judging it on its merits.
slysaint
Senior Member
- Messages
- 2,125
Yes, Kjersti Krisner who has three kids with ME who is also an advocate. But this was primarily a conference of scientists......
charles shepherd
Senior Member
- Messages
- 2,239
Yes, I have passed on details for Jane Colby and the Tymes Trust to my colleague at the BBC who is making this programme
The MEA has a close working relationship with JC and TT
The BBC also knows about David Tuller and his critiques of the PACE trial
CS
charles shepherd
Senior Member
- Messages
- 2,239
Part of the background information relating to the coverage of child protection issues in this programme relates to two meetings at the House of Lords which involved Mrs Isabelle Trowler, Chief Social Worker for Families and Children at the Dept of Education
Minutes for our last meeting in March 2017:
http://www.forward-me.org.uk/14th March 2017.htm
Details for the previous meeting (held in June 2014) are below
Dr Nigel Speight, who is an honorary paediatric adviser to the MEA, was invited to both of these meetings
Dr Charles Shepherd
Hon Medical Adviser, MEA
From Minutes for the June 2014 meeting at the House of Lords:
2.Ms Isabelle Trowler (DfE)
2.1 The Chairman welcomed Isabelle Trowler, Chief Social Worker for Families and Children at the Department for Education and Jonathan Bacon, Head of her office.
Ms Trowler explained she had been a children’s Social Worker, mainly in local government, for twenty-five years. Much of her work had been to do with child protection and she had been pressing for change in this area. She had come into her post at DfE recently. The post had been a recommendation of the Monro report (2011). Monro had said that a person with front-line experience was needed. In the event it had been decided there should be two Chief Social Workers, one for children (herself) and another for adults at the Department of Health, with whom she works closely. They spend a lot of time “out and about” talking to social workers and families too.
2.2 Ms Trowler said there had recently been two reviews to do with social work education and training, and she was currently working on the knowledge and skills needed for children’s social work. It appeared that some of those coming out of social work training hadn’t the necessary skills to be effective children’s social workers. A range of measures was being brought in to improve the delivery of statutory social work. The system needed improvement. You could have the most talented social workers but they would not be able to operate effectively in a dysfunctional system. She had spent the last few years leading a “change” programme in a local authority, working with families and CAMHS. She had concerns about “mission creep” and intrusion into families’ lives. She would now be very happy to answer questions.
3.Questions
3.1 Jane Colby asked about Section 47 action. In 1999 she had contributed to a Panorama programme dealing with suspected Munchausen’s Syndrome by proxy. It had become clear there was a skewed picture as far as children with ME were concerned. 120 supposedly were Munchausen’s victims but neither TYMES nor AYME had been able to find this. Something appeared to be going very wrong in leading to these families being suspected.
Mary Jane Willows and Dr Nigel Speight agreed with this. The number of families who felt they were being threatened (not necessarily with Section 47 action) was increasing. For example, if a child had been unable to attend school the parents had been told that “proceedings” would be taken – even in cases where a consultant’s letter had been produced confirming the child’s condition.
Dr Speight said he liked the term “mission creep” and said it was applicable in many areas – for example where parents were accused of not getting treatment for a child when in fact all they had done was to resist the child being subjected to psychiatric tests.
3.2 The Chairman (Countess of Mar) suggested that every social worker should read the paragraphs in the NICE Guidelines and the CMO’s report which say that the parents of a child with ME have the right to refuse any particular form of treatment. It was agreed that right of refusal is spelled out in many communications but it seems to be ignored in many cases (by health, social work, education and other services). Christine Harrison pointed out that her severely affected daughter, Tanya, had fought hard to get the rights of patients included in the Guideline.
3.3 Ms Trowler said one of the problems was that there was no form of central intelligence in social work to pull together local information about child protection matters. She would like to see details of the 120 cases that had been mentioned. This was a matter which perhaps the College of Social Work should take up.
The Chairman said that a few years ago she had written to a Minister supplying details of worried parents who were willing to be interviewed. That was not done, but she was informed the social workers had been interviewed! Could that exercise be completed now? Ms Trowler said that could be considered. It would be necessary to ensure the right methodology was employed.
3.4 Dr Charles Shepherd had brought a copy of the CMO report. He recommended the chapter on children to Ms Trowler. Social services should be aware that medical opinion in this area was divided. As far as he could see each social worker gets a report from just one doctor, and accepts the view of that doctor. He was not clear what education and training social workers received about controversial conditions like ME.
Ms Trowler replied that this was a problematical area and that probably very little was said about specific medical conditions in the initial training of social workers. But that could be covered as they went through their careers and could be taken up with the college.
Dr Shepherd, Dr Speight and Jane Colby suggested they could contribute to this.
Ms Trowler added that she would not wish to see social workers accept just the view of a doctor – they needed to consult more widely than that. Mary Jane Willows pointed out, though, that many people would not overrule a doctor’s decision which often went unchallenged until the matter came to court.
She and Jane Colby added that research done in the 1990s and since showed that ME was the biggest cause of sickness in school children. It had been shown that if these children have home tutoring or are taught in small groups they can do well. This had been dealt with during the passage of the Children and Families Bill, and the DofE had issued guidance about it.
3.5 Mary-Jane Willows and Jane Colby asked whether there was any way that social workers could find out how many children had ME/CFS and how many of them had been subject to Child Protection action. Ms Trowler said she doubted that any detailed information was held on this subject.
Members asked whether the Dof E might conduct a survey, but Dr Speight suggested looking at a few cases rather than doing a mega-survey. Ms Trowler agreed that case review was the best mechanism; where would be the best place for her to start?
The Chairman asked Ms Trowler to get in touch with her in the first place. Ms Trowler added that she would like to examine cases to see if there was evidence of decision-making bias and if so why.
Dr Speight suggested that families where children had ME might be seen as easier targets than “tougher” families with multiple social problems. Ms Trowler agreed that social workers should not spend more time with families than was absolutely necessary. There was some evidence of procrastination.
3.6 The Chairman said that people who had been subject to child protection investigation were not allowed to work with children again. Ms Trowler said she was surprised if all child protection subjects were treated in this way although there were obviously some cases where it would be appropriate.
Christine Harrison added that it was important that social workers were aware that there can be more than one person, including siblings, in a family with ME/CFS and that while one might show some health improvement, another might not – it was important for them to be judged as individuals. ME/CFS was the same as any other long-term condition.
3.7 At this point Ms Trowler had to leave. The Chairman thanked her and asked if she could come back. Ms Trowler said she would be happy to do so after she had been able to look into the subject further.
Minutes for our last meeting in March 2017:
http://www.forward-me.org.uk/14th March 2017.htm
Details for the previous meeting (held in June 2014) are below
Dr Nigel Speight, who is an honorary paediatric adviser to the MEA, was invited to both of these meetings
Dr Charles Shepherd
Hon Medical Adviser, MEA
From Minutes for the June 2014 meeting at the House of Lords:
2.Ms Isabelle Trowler (DfE)
2.1 The Chairman welcomed Isabelle Trowler, Chief Social Worker for Families and Children at the Department for Education and Jonathan Bacon, Head of her office.
Ms Trowler explained she had been a children’s Social Worker, mainly in local government, for twenty-five years. Much of her work had been to do with child protection and she had been pressing for change in this area. She had come into her post at DfE recently. The post had been a recommendation of the Monro report (2011). Monro had said that a person with front-line experience was needed. In the event it had been decided there should be two Chief Social Workers, one for children (herself) and another for adults at the Department of Health, with whom she works closely. They spend a lot of time “out and about” talking to social workers and families too.
2.2 Ms Trowler said there had recently been two reviews to do with social work education and training, and she was currently working on the knowledge and skills needed for children’s social work. It appeared that some of those coming out of social work training hadn’t the necessary skills to be effective children’s social workers. A range of measures was being brought in to improve the delivery of statutory social work. The system needed improvement. You could have the most talented social workers but they would not be able to operate effectively in a dysfunctional system. She had spent the last few years leading a “change” programme in a local authority, working with families and CAMHS. She had concerns about “mission creep” and intrusion into families’ lives. She would now be very happy to answer questions.
3.Questions
3.1 Jane Colby asked about Section 47 action. In 1999 she had contributed to a Panorama programme dealing with suspected Munchausen’s Syndrome by proxy. It had become clear there was a skewed picture as far as children with ME were concerned. 120 supposedly were Munchausen’s victims but neither TYMES nor AYME had been able to find this. Something appeared to be going very wrong in leading to these families being suspected.
Mary Jane Willows and Dr Nigel Speight agreed with this. The number of families who felt they were being threatened (not necessarily with Section 47 action) was increasing. For example, if a child had been unable to attend school the parents had been told that “proceedings” would be taken – even in cases where a consultant’s letter had been produced confirming the child’s condition.
Dr Speight said he liked the term “mission creep” and said it was applicable in many areas – for example where parents were accused of not getting treatment for a child when in fact all they had done was to resist the child being subjected to psychiatric tests.
3.2 The Chairman (Countess of Mar) suggested that every social worker should read the paragraphs in the NICE Guidelines and the CMO’s report which say that the parents of a child with ME have the right to refuse any particular form of treatment. It was agreed that right of refusal is spelled out in many communications but it seems to be ignored in many cases (by health, social work, education and other services). Christine Harrison pointed out that her severely affected daughter, Tanya, had fought hard to get the rights of patients included in the Guideline.
3.3 Ms Trowler said one of the problems was that there was no form of central intelligence in social work to pull together local information about child protection matters. She would like to see details of the 120 cases that had been mentioned. This was a matter which perhaps the College of Social Work should take up.
The Chairman said that a few years ago she had written to a Minister supplying details of worried parents who were willing to be interviewed. That was not done, but she was informed the social workers had been interviewed! Could that exercise be completed now? Ms Trowler said that could be considered. It would be necessary to ensure the right methodology was employed.
3.4 Dr Charles Shepherd had brought a copy of the CMO report. He recommended the chapter on children to Ms Trowler. Social services should be aware that medical opinion in this area was divided. As far as he could see each social worker gets a report from just one doctor, and accepts the view of that doctor. He was not clear what education and training social workers received about controversial conditions like ME.
Ms Trowler replied that this was a problematical area and that probably very little was said about specific medical conditions in the initial training of social workers. But that could be covered as they went through their careers and could be taken up with the college.
Dr Shepherd, Dr Speight and Jane Colby suggested they could contribute to this.
Ms Trowler added that she would not wish to see social workers accept just the view of a doctor – they needed to consult more widely than that. Mary Jane Willows pointed out, though, that many people would not overrule a doctor’s decision which often went unchallenged until the matter came to court.
She and Jane Colby added that research done in the 1990s and since showed that ME was the biggest cause of sickness in school children. It had been shown that if these children have home tutoring or are taught in small groups they can do well. This had been dealt with during the passage of the Children and Families Bill, and the DofE had issued guidance about it.
3.5 Mary-Jane Willows and Jane Colby asked whether there was any way that social workers could find out how many children had ME/CFS and how many of them had been subject to Child Protection action. Ms Trowler said she doubted that any detailed information was held on this subject.
Members asked whether the Dof E might conduct a survey, but Dr Speight suggested looking at a few cases rather than doing a mega-survey. Ms Trowler agreed that case review was the best mechanism; where would be the best place for her to start?
The Chairman asked Ms Trowler to get in touch with her in the first place. Ms Trowler added that she would like to examine cases to see if there was evidence of decision-making bias and if so why.
Dr Speight suggested that families where children had ME might be seen as easier targets than “tougher” families with multiple social problems. Ms Trowler agreed that social workers should not spend more time with families than was absolutely necessary. There was some evidence of procrastination.
3.6 The Chairman said that people who had been subject to child protection investigation were not allowed to work with children again. Ms Trowler said she was surprised if all child protection subjects were treated in this way although there were obviously some cases where it would be appropriate.
Christine Harrison added that it was important that social workers were aware that there can be more than one person, including siblings, in a family with ME/CFS and that while one might show some health improvement, another might not – it was important for them to be judged as individuals. ME/CFS was the same as any other long-term condition.
3.7 At this point Ms Trowler had to leave. The Chairman thanked her and asked if she could come back. Ms Trowler said she would be happy to do so after she had been able to look into the subject further.
charles shepherd
Senior Member
- Messages
- 2,239
The BBC interview is also being discussed on the MEA Facebook page - where Jane Colby has made a contribution
MEA Facebook:
https://www.facebook.com/meassociation/
Esther12
Senior Member
- Messages
- 13,774
It sounds like Janet's post may have reflected a misunderstanding, so I'd avoid that. Still, always good to raise concerns about the PACE trial and related issues with anyone who may be able to draw attention to it. Maybe the piece on the NYT would be worth sending on?
https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html
Last edited:
bullybeef
Senior Member
- Messages
- 488
- Location
- North West, England, UK
Many thanks for reassuring our concerns and the information.
I can appreciate Dr. Davis and our US friends would have naturally been very disconcerted & concerned, but it wouldn't make sense that IiME would have permitted any unnecessary insensitive and antagonising questioning from an invited media.
Perhaps it would've been appropriate for the media to inform the US contingent of their angle first, but maybe they wanted a heated, natural response, as we suggested. Such unbelievable acts are literally foreign to many.
Without going too far off topic, it also beggars belief that children & families continue to be mistreated this way. After the ignorance surrounding the recent "Three Girls" story, and how ignorance by the authorities contributed to their suffering, the Nanny State does seem to interfere when it doesn't concern them, rather than atrocities that should.
The world can backwards sometimes.