BBC Radio 4: Children with ME

[Chrisb]

I was interested in the history of the "blame the parents" approach. I found this paper by Lask and Dillon from 1990 which must be one of the earliest.

http://adc.bmj.com/content/archdischild/65/11/1198.full.pdf

It is said that after treatment (resembling a form of GET) "only a few children remain or become chronic invalids and usually they have parents who are unable or unwilling to accept a comprehensive approach to treatment.

Finally, care should be taken by the profession to avoid unnecessarily burdening children and their parents with a diagnosis of myalgic encephalomyelitis or postviral syndrome..."

What makes this interesting is that Dillon is far from being one of the usual suspects, having been the author of the paper on "epidemic neuromyasthenia" at the Hospital for Sick Children, including a report on the illness in seven children, with "at least" four having continuing symptoms at two years, and suggesting that the condition might be underdiagnosed in the community

https://www.researchgate.net/public..._for_Sick_Children_Great_Ormond_Street_London

Sorry if this is off topic, but it seemed useful background info to me.

 

[slysaint]

Yet, this is the post about the programme on AFME's FB page.

Perhaps (and I'm guessing here) AfME are as usual playing with words; ie maybe they are saying that the false accusations etc are not "child prot investigations after declining treatment." but because of something else.......eg ignorance about the illness etc.

Unless JC reveals who she is talking about we might have to wait and see........but quite worrying.

 

[Wolfiness]

Ugh… it's gonna be Fund EC To Understand This Cruel Illness, isn't it?

 

[Countrygirl]

Ugh… it's gonna be Fund EC To Understand This Cruel Illness, isn't it?

I fear you are right @Wolfiness

It will be more of the saintly Esther to the rescue ably supported by AFME and Prof Holgate.

. (Is she having a vision of the Virgin Mary in this photograph?)

Let's us hope the paediatrician view is presented by Dr Nigel Speight and he won't be edited out.

 

[Jo Best]

A reminder of what AYME said about their survey in Feb. 2017..

AYME
February 24 ·
AYME launches survey to shine light on the real impact of False Accusations against families of young people with M.E/CFS

False accusations against families affected by M.E./CFS have devastating consequences. The Association of Young People with M.E. (AYME) has noticed a continuing trend in such claims which are not reducing even in light of increased awareness of the condition.

National figures for fabricated or induced illness are very low. But real-life examples amongst AYME members are much more prevalent alongside accusations of emotional and physical abuse and neglect.

“We are currently working with more than 9 families who very tragically find themselves in this position,” explains AYME’s Chief Executive Mary-Jane Willows.

“M.E./CFS is a very real condition and its symptoms can touch every single element of young people’s lives. However, the complex nature of M.E./CFS, teamed with widespread misunderstanding of it amongst health, education and social care professionals, is producing a tragically high number of false accusations.

“This must stop.”

The charity has launched a questionnaire to survey anyone whose life has been affected by M.E./CFS, to get to the bottom of just how common these accusations really are. AYME plans to use the data gathered to inform government of the need for change and the importance of family support.

“We see safeguarding referrals requested by professionals, the general public and even on occasion family members and in more cases than not, a second medical opinion from a specialist medical practitioner would not only be good practice but also resolve the issue. We refuse to ignore this worrying trend seen amongst so many of those we help, we must do what we can to properly assess what is happening to families in these instances and what needs to be done to empower those falsely accused to get the best outcome for their child.”

The survey takes less than a few minutes to complete and will remain open until 3rd April 2017. To take part, visit:

https://goo.gl/7MlqfG

“Everyone who takes part in this research will be help paint a more realistic picture of these accusations. We really appreciate that time is short and are deeply thankful to all those who take part,” continues Willows.

“We are keen for the survey to be shared far and wide and anyone whose family’s lives have been affected by M.E./CFS take part – regardless of whether they have experienced accusations of this kind or not. This will greatly help us build up a more representative impression of where things stand.”

 

[Jo Best]

Action for ME wrote in March 2017...

Children’s Services Team to pick up AYME survey data
March 23, 2017

We’d like to reassure family members who’ve filled in a survey into false accusations against families of young people with M.E/CFS launched by The Association of Young People with M.E. (AYME ) that the data will not be abandoned when AYME closes on Monday 3 April.

The data will be used by Action for M.E.’s Children’s Services Team to improve the services and support for young people and families affected by M.E. So if you’ve filled out the survey or are planning to do so, don’t worry, your input will not go to waste.

If you are a parent or family member of a young person who has M.E. you can fill out the survey online until 3 April.

 

[TiredSam]

We’d like to reassure family members who’ve filled in a survey into false accusations against families of young people with M.E/CFS launched by The Association of Young People with M.E. (AYME ) that the data will not be abandoned when AYME closes on Monday 3 April.

The data will be used by Action for M.E.’s Children’s Services Team to improve the services and support for young people and families affected by M.E. So if you’ve filled out the survey or are planning to do so, don’t worry, your input will not go to waste.

If you are a parent or family member of a young person who has M.E. you can fill out the survey online until 3 April.

Our medical advisor Esther Crawley, to whom we delivered children for her S.M.I.L.E Lightning Process trail and her FITNET CBT trial, likes to punish children with severe ME who pretend to be too ill to stand in a circle and chant as instructed. As their continued existence and refusal to get better is an afront to her status as ME expert and their lack of improvement can't possibly be her fault, she has decided that they must be re-diagnosed with Pervasive Refusal Syndrome.

To this end Esther has written a paper on the subject, Pervasive Refusal Syndrome (PRS) presenting with Chronic Fatigue Syndrome: avoiding the pitfall of a wrong diagnosis. The treatment for PRS is admittance to a psychiatric ward and coercion to do more activity i.e. the exact opposite of the needs of a child with profound ME/CFS.

Any families which have been left on their own to look after a child affected by this devastating illness, and in addition have had to deal with such horrific abuse from the likes of Crawley, should write down all their complaints and what they are trying to do about it and send it to us. We won't show Esther, honest.

 

[arewenearlythereyet]

I fear you are right @Wolfiness

It will be more of the saintly Esther to the rescue ably supported by AFME and Prof Holgate.

. (Is she having a vision of the Virgin Mary in this photograph?)

Let's us hope the paediatrician view is presented by Dr Nigel Speight and he won't be edited out.

I guess this is when the moment of genius occurs as she dreams up the next brilliant insight that's going to further her career?

Alternatively I think there must be something going on just out of shot?

 

[Jo Best]

Dr. Nigel Speight gave some examples of the appalling mistreatment in his talk at the Care4ME Conference in Brussels in March 2017, which was recorded and is now online, thanks to Nancy Van Hoylandt, of the Belgian representative organisation of the European ME Alliance (http://www.euro-me.org/news-Q12017-002.htm).
Written report on the event:
http://www.investinme.org/journals.shtml
pdf:
http://www.investinme.org/Documents/Journals/Journal of IiMER Vol 11 Issue 1.pdf
PR thread:
http://forums.phoenixrising.me/inde...-alliance-meets-in-european-parliament.49746/

 

[Luther Blissett]

It is bit irritating that they are trying to portray themselves as fighting on the side of the abused families when they are guilty, at least by association, of generating this distressing situation in the first place.

They have to accept some responsibility for the abuse of families as they have given their support to the doctor who is responsible for re-diagnosing children with PRS and subjecting them to intensive physiotherapy, leaving the child paralysed. The child and family is then dumped ....if they are lucky. If they aren't, the parent is subjected to threats of legal proceedings. These families are too fearful to speak out and alert people to what is happening to them.

The whole thing is typical AfME.
TYMEs Trust have been fighting on behalf of parents and children for years, produced literature etc etc but get very little credit.

Along with little credit, I would guess that Tymes Trust also have little funding in comparison with AfME, along with the mental and emotional strain of providing support in very distressing circumstances.

The entire Tymes Trust team work pro bono.

I would like to thank AfME !?!, @slysaint and @Countrygirl for inspiring me to donate to TYMEs.

http://www.tymestrust.org/

 

[Jo Best]

This is the Tymes Trust pdf on false allegations, just while I have the link up, it's from 2014 so is worse now:
http://www.tymestrust.org/pdfs/falseallegations.pdf

As an aside, I aso thought the choice of phrase in AYME's post about the survey was interesting...

"AYME launches survey to shine light on the real impact of False Accusations against families of young people with M.E/CFS"

...given the title of the document produced by Tyme Trust on what went on behind the scenes of the CMRC, 'Shining A Light On The CMRC Setup (Minutes And Emails Obtained Under FOI) A Report from Tymes Trust - the inside story of the UK CFS/ME Research Collaborative': http://www.tymestrust.org/pdfs/shiningalight.pdf

 

[Valentijn]

Alternatively I think there must be something going on just out of shot?

Something only she can see ... perhaps visions of torturing children are dancing in her head.

 

[TiredSam]

Dr. Nigel Speight gave some examples of the appalling mistreatment in his talk at the Care4ME Conference in Brussels in March 2017, which was recorded and is now online, thanks to Nancy Van Hoylandt, of the Belgian representative organisation of the European ME Alliance (http://www.euro-me.org/news-Q12017-002.htm).
Written report on the event:
http://www.investinme.org/journals.shtml
pdf:
http://www.investinme.org/Documents/Journals/Journal of IiMER Vol 11 Issue 1.pdf
PR thread:
http://forums.phoenixrising.me/inde...-alliance-meets-in-european-parliament.49746/

I watched all of that video and would recommend it. I was talking to my sister in the UK on the phone a week ago, saying I'm not sure I'd feel safe visiting the UK due to their treatment of M.E. patients. eg if I was exhausted after the trip and collapsed somewhere and ended up in a hospital. I was ranting away and she said "oh come on, they don't lock people up". I'll send her that video.

 

[slysaint]

Just bumping this as it's on tomorrow.
http://www.bbc.co.uk/programmes/b08vyly5

File on 4 , 8 pm

 

[trishrhymes]

File on 4 , 8 pm

 

[Jo Best]

Was just reading the NICE 'Static list - candidate guidelines post consultation' document from Dec. 2013, and thought this extract relevant to the topic of the Radio 4 programme (again, situation even worse now).

At a recent meeting organised by Invest in ME with Dr Martin McShane, Director of Domain Two, NHS Commissioning Board [5], was presented with evidence of families of ME patients being prosecuted due to their children having ME and the healthcare staff dealing with the cases not understanding the disease process sufficiently. This is far from uncommon.

Dr McShane stated that he understood the family’s anger and said he would feel exactly the same if he was in their situation. He expressed his apologies and acknowledged the need to balance the system to ensure that situations such as this would not occur and that a major task was to alleviate stress for patient and carer.

He said he heard what the parents were saying .

This means that the NICE guidelines have failed as the guidelines still allow this intolerable situation to occur. We need to address the major flaw in the NICE guidelines – namely its bias toward promoting a predetermined one-size fits all approach to ME by continually highlighting CBT and GET therapies despite widespread derision from ME patients.

From page 100-101: https://www.nice.org.uk/guidance/cg...ncephalomyelitis-static-list-review-decision2

 

[Countrygirl]

This is the blurb describing the programme. Notice it says ONE of the charities objected to the way parents were accused of FII...........meaning the other one didn't object.............now just who could that be?

Children with ME
File on 4
File on 4 investigates claims that parents whose children suffer from a crippling illness that leaves them sick and permanently exhausted have been falsely accused of child abuse.

Parents of children with Myalgic Encephalomyelitis (ME) reveal how they have been investigated and referred for child protection measures on suspicion of a rare form of child abuse known as Fabricated or Induced Illness (FII).

FII, also sometimes known as Munchausen's Syndrome by Proxy, is extremely rare and occurs when a parent or carer exaggerates or deliberately causes the symptoms of a child's illness. One charity says FII is being used inappropriately by education and health professionals. We talk to families who claim the stress caused by this accusation has made their children worse.

With doctors divided over the best way to treat children, what's the impact on families?

Reporter: Matthew Hill
Producer: Nicola Dowling

 

[Countrygirl]

I also see that File on 4 post transcripts of the programme which will be useful for the record.

 

[charles shepherd]

Dr Nigel Speight, who is MEA paediatric adviser, attended the first meeting at the House of Lords back in June 2014 that we had with Mrs Isabelle Trowler, Chief Social Worker for Children an Adolecents, to discuss child protection issues

Nigel has recorded an interview ffor the BBC radio programme

Dr Charles Shepherd
Hon Medical Adviser, MEA

Minutes from the meeting:

FORWARD-ME

Minutes of the Meeting held in the Television Interview Room

House of Lords

Tuesday 10 June 2014, 2pm

Present:

Countess of Mar (Chairman)

Dr Charles Shepherd (MEA)

Dr Nigel Speight (Paediatrician)

Bill Kent (reMEmber)

Jane Colby (Tymes Trust)

Keith Harley (Tymes Trust)

Christine Harrison (BRAME)

Mary-Jane Willows (AYME)

Dr Paul Worthley (ME Trust)

1. Apologies had been received from Sonya Chowdhury, Sue Waddle, Hannah Clifton, Janice Kent and Arlene Wilkie.

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 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.

4. Minutes of last meeting (12 February 2014) were agreed to be a true record. There were no matters arising, but Christine Harrison pointed out that the Minister, Edward Timpson, had said he would write to the Department of Health. Had he done so, and if so what was the outcome? The Chairman said she would enquire.

5.Research

5.1 The Chairman said Professor Peter White had been asked by K Geraghty for raw data from the PACE trial and that Prof White had complained to the enquirer’s university about “harassment”. Should we do anything about this? Dr Charles Shepherd said that we had not seen the exchange of e-mails so it was difficult to comment. The Chairman proposed that she would ask to see the e-mails. If necessary we could then take the matter further. This was agreed.

5.2 Dr Charles Shepherd said he had been to the IACFS/ME Conference in San Francisco. 400 researchers and patients were there. It lasted five days and was totally biomedical. “Quite wonderful”. The UK Research Collaborative Conference would be held in Bristol on 1 and 2 September. Charities were welcome but must pay before a date in June shown on the website. The MEA had raised nearly £3,000 to bring over Professor Ian Lipkin (the virus hunter) to speak at the conference.
5.3 Dr Shepherd added that AFME and the MEA were jointly funding a new immune function study with Prof Julia Newton and Professor Stephen Todryk at the University of Northumbria. There was news of a neuro-inflammation study from Japan. He had discussed this with Prof Hugh Perry who thought it was sound. The Biobank project had come to the end of phase 2. There were over 200 samples now stored at the Royal Free Hospital. In phase 3 the samples would be released to researchers who want them. Rituximab; he had been to the Invest in ME Conference. Dr Amolak Bansal and Professor Jonathan Edwards who are involved in the planned clinical trial were there. A preliminary study on immune function is now in progress; when the results are known they will decide what sort of clinical trial is feasible, so the actual trial may not start until 2015. Funding should not be a problem.

5.4 The Chairman asked about the Van Ness exercise study. Dr Shepherd said the results had been replicated. It looked very sound and might eventually be used as a diagnostic tool. It helped to overturn the GET theory.

6.DWP

The Chairman expressed great dissatisfaction with the new guidelines. Christine Harrison said they had been produced without consulting her, in spite of saying that they would. Dr Charles Shepherd said some disturbing things had crept in since he had last been consulted, some months ago. There were several inaccuracies. He and Sonya Chowdhury had been in touch with Annette Brooke about it, and a meeting was to be arranged with the doctor who had sent it. Chapters 2 and 4 were particularly bad. The Chairman said she would write to Lord Freud on behalf of the group expressing our strong disappointment. She asked Charles Shepherd to send her some bullet points. Christine Harrison said she would send some too.

7.Any other business

Dr Charles Shepherd said they were trying to get something out of the (DWP) Evidence-Based Review, but there was not likely to be much improvement. He saw no point in asking Dr Paul Lichfield to come and speak. The Chairman said the next speaker would be Prof Baker on the NICE Guidelines. Let her have questions by the end of the coming weekend.

There being no further business the meeting ended at 3.30pm

 

[AndyPR]

AfME posted this on their Facebook page this morning

The results of an Action for M.E. survey into the experiences of families affected by M.E. who’ve faced false accusations of abuse, neglect and fabricated/induced illness will be revealed tonight on BBC Radio 4’s award-winning documentary series, File on 4.

Our Chief Executive, Sonya Chowdhury, will also be on BBC Radio Bristol this morning, talking about the survey, just after 8am. You can tune in at www.bbc.co.uk/radiobristol

Concerned about the increasing numbers of families affected by M.E. who face such accusations because of a lack of understanding about M.E, and its impact, Action for M.E.’s Children’s Services Team conducted a survey to find out more.

The resulting programme, broadcast tonight at 8pm, was initiated by Action for M.E., after we took our survey results to journalist Matthew Hill. The File on 4 team have interviewed a number of families that we have been supporting, as well as investigating wider issues associated with M.E., having spoken to a number of other M.E. charities, researchers and health professionals.

You can listen to File on Four at www.bbc.co.uk/programmes/b08vyly5, and read more about the survey results when we publish them tomorrow.

ETA: Radio Bristol is featuring this story on their news segments, and it's part of their phone-in section as well.