The Times: Chronic fatigue syndrome: ME families accused of child abuse

[Andy]

Hundreds of families whose children suffer from the debilitating condition ME have faced child protection investigations in the past decade, The Times has learnt.

Campaigners say that ignorance of, or disbelief in, myalgic encephalomyelitis, also known as chronic fatigue syndrome, leads to families being referred by schools or doctors to social services on suspicion of child abuse and neglect.

The Tymes Trust, which supports young people with ME, says that since 2010 it has advised 337 families who have needed help in dealing with social workers.

Cases examined by The Times included police involvement, parents summoned to the family courts, child protection case conferences and attempts to overturn diagnoses of ME to place children in psychiatric care.

Sign-up/Paywall, https://www.thetimes.co.uk/article/...-me-families-accused-of-child-abuse-np968v9dt

Mod note: See post #13 for the full page of articles

 

[TiredSam]

An odd article which manages to go from brilliant at the start to horrendous at the end. Must be someone's concept of "balance".

The spokeswoman said: “It can be difficult for parents and children because graded exercise is difficult and can even be painful, especially at first.

“Very occasionally, some parents have been reluctant to, even with support, supervise and encourage children and young people to follow rehabilitation plans and this may result in the health needs of the child being neglected.

“If this situation becomes severe paediatricians have an ethical duty to share their concerns with children’s social care.”

A few trolls in the comments section as well.

 

[Sasha]

An odd article which manages to go from brilliant at the start to horrendous at the end. Must be someone's concept of "balance".



A few trolls in the comments section as well.

If there is a comments section, I'd address the sane audience over the heads of the trolls and I'd paste the link for patients and supporters to sign up. We need to be doing that on every single ME/CFS news story from now on.

Edit: I'm not able to do this as I'm not a Times subscriber - can anyone?

 

[Amw66]

Given the cognitive dissonance in paediatric research with careers to be maintained - expect

• a counter article ( for more " balance" and to gain control of narrative)
• a reframing
• both

 

[lunarainbows]

An odd article which manages to go from brilliant at the start to horrendous at the end. Must be someone's concept of "balance".



A few trolls in the comments section as well.

Is there anyone here who feels able to write an email to the Times with the relevant info about why their piece (The ending) was inaccurate / wrong? I know the guardian hasn’t been receptive in the past but the Times might be.

 

[Trish]

Does it identify the 'spokeswoman' who thinks kids need to exercise and child protection procedings are justified? Sounds to me like Crawley. Whoever it is should be prepared to be identified.

 

[Trish]

@Russell Fleming, is the MEAssociation aware of this awful claim that kids with very severe ME need exercise treatment? Can Nigel Speight and Charles Shepherd write to the Times about this?

 

[TiredSam]

Does it identify the 'spokeswoman' who thinks kids need to exercise and child protection procedings are justified?

Unfortunately not:

A spokeswoman for the Royal College of Paediatrics and Child Health said that FII was a rare but serious concern and there was “very little evidence of cases of parents deliberately fabricating illness in relation to ME”.

The college is updating its guidance on FII and “perplexing presentations” because, it said, “thinking on the best way to approach and manage these has moved on”.

The college has also contributed to the Nice review of ME, which is due to publish new treatment recommendations in December, but defended the continuing use of graded exercise.

The spokeswoman said: “It can be difficult for parents and children because graded exercise is difficult and can even be painful, especially at first.

“Very occasionally, some parents have been reluctant to, even with support, supervise and encourage children and young people to follow rehabilitation plans and this may result in the health needs of the child being neglected.

“If this situation becomes severe paediatricians have an ethical duty to share their concerns with children’s social care.”

But the spokeswoman (as in "let me put a spoke in your wheel") is the only person in the whole article who gets to remain anonymous, presumably because of the threat to her life from ME militant activists.

 

[Trish]

@PhysiosforME I assume the so called 'rehabilitation' forcing very sick kids to do GET would be carried out by physios. Can you write to the Times to put them straight on the lack of evidence and the dangers?

 

[lunarainbows]

Merged thread. Note this article is part of the group of articles shown in full in post #13 below.

The Times: Chronic Fatigue Syndrome: We wouldn’t agree to make our son worse

A social worker wagged her finger at Steve and Lisa Hartley and said: “This is serious, this will be a long process.”

“Could we lose our children?” the couple asked. “It could come to that,” the official replied.

The Hartleys, both teachers, are a quiet couple with three children to whom they are devoted. In January they found themselves under suspicion of child abuse.

The social worker was in their home, near Workington, Cumbria, because their son James, 17, has severe ME and their younger daughter Sophie, 12, suffers a milder form. Their middle child, Emily, 16, is healthy, outgoing and active. Mrs Hartley, 47, said: “We were treated as guilty until proven innocent.”
....
(paywall)

https://www.thetimes.co.uk/edition/...wouldnt-agree-to-make-our-son-worse-m3w5bnw5j

 

[TiredSam]

Very nice of the Times to have an ME blitz, but I wish they'd pace themselves at 2-per-week in accordance with my free article limit.

 

[TiredSam]

A spokeswoman for the Royal College of Paediatrics and Child Health said that FII was a rare but serious concern and there was “very little evidence of cases of parents deliberately fabricating illness in relation to ME”.

Whereas there is a mountain of evidence of cases of pediatricians deliberately fabricating illness in relation to ME. Come on journalist, do a proper job, you're nearly there.

 

[Adam pwme]

 

[Amw66]

Unfortunately not:


But the spokeswoman (as in "let me put a spoke in your wheel") is the only person in the whole article who gets to remain anonymous, presumably because of the threat to her life from ME militant activists.

The new FII guidance ( drawn up with input from EC's team) effectively targets CFS - there was a poster excerpt on a thread last year from a training seminar - I can't remember which thread it was, which included police input. The paediatrician delivering the CFS section was the same who directed GET for Maddie Bourlet, urging her to " push through" and which left her bedbound.
Pity there is no framing of this in the article.

 

[Philipp]

The point that FII needs to be taken serious is a valid one in general, and it is valid to potentially over-react to every suspected case of FII since it can be lifethreatening. Since it is so rare no one should ever have a good enough experience base to be able to tell when concerns in this direction are invalid, if such a thing is even possible (I'd doubt it).

But.

To me, it does not make any sense whatsoever to assume any illness that looks like ME should fall under said category. The worries about these situations, as far as I understand, is mothers who are essentially suffering from a psychosis (or psychosis like state) doing weird stuff like feeding their infants an excessive amount of salt and getting them to a doctor, i.e. actively harming the kids and misleading medical personnel. That is the opposite of what I would expect a situation within a famliy with a child that has ME should look like, especially if it is linked to claims of people not wanting their kids to get treatment. FII should have people seeking treatment for their kids when there is no need to do so or creating a situation that makes actual treatment necessary. We have the situation of people trying to avoid medical torture for their sick kids. I may have a complete lack of understanding, but to me it just does not add up.

And on the point of the poorly executed attempt at 'balance' that has crept up time and again in journalism these days: We have no evidence for how to do any kind of rehabilitation in ME/CFS to this point. Anyone trying to sell a training program to people with an illness defined by getting worse through undergoing a training program is a criminal unless they have found a novel safe and effective way to do so - in which case the onus of proof is on them and there is a need to publish studies beforehand.
I do not think this reality can be omitted in an article like this, the way it is worded it doesn't really make it clear that the sentence about how the college 'defended the continuing use of graded exercise' is essentially outing them as an organisation that ignores the consensus of the scientific evidence. I appreciate that it is difficult to frame this appropriately within the scope of an article like that without sounding like the journalist is trying to implement personal views and valuations of facts, but this is akin to letting the royal college of diabetics (which I just made up, if there is such a thing I am not talking about the real one) tell people how they still think the neglected and overlooked population of type 1 diabetics needs to gradually build their capacity to process sugar by graded sugar therapy, gradually increasing their sugar intake over time, to get better without any comment that the entire body of scientific evidence to date says that this is impossible and harmful.

 

[ME/CFS Skeptic]

Come on journalist, do a proper job, you're nearly there.

I don't think the journalist did much wrong here. It's the spokeswoman for the Royal College of Paediatrics and Child Health who made the controversial statement, the Times reporter merely recorded it. I think that any letters addressing the statement should preferably be sent to the Royal College of Paediatrics and Child Health, not to the Times for reporting it.

 

[Trish]

I think both are needed. The Times is read by a lot of doctors as well as the general public. Misinformation like this needs to be corrected publicly.

 

[TiredSam]

I don't think the journalist did much wrong here. It's the spokeswoman for the Royal College of Paediatrics and Child Health who made the controversial statement, the Times reporter merely recorded it. I think that any letters addressing the statement should preferably be sent to the Royal College of Paediatrics and Child Health, not to the Times for reporting it.

Hmm. Reporters and editors have a lot of leeway in deciding who to interview, what to include, and how to report it. If they choose to reproduce harmful filth I'd like to think there'd be some accountability or sense of responsibility.

I did wonder whether the "spokeswoman" was included as an example of how bad things still are, as a contrast to what was written above. I suppose there's an outside chance that that's the case, but if that's the case the article could do with being restructured so that it doesn't appear as if she's having the last word. Last is where the reasonable conclusion belongs, and I'd hate any reader to confuse the spookswoman's words with that.

Journalists and editors write what they want and how they want, and should expect a bit of feedback when they get it wrong.

 

[Esther12]

I think that they had to provide the response from the Royal College of Paediatrics and Child Health.

The trouble is that it seems that the Times (and any other mainstream UK publication) doesn't want to dig into the details of the problems with the research used to claim patients should be expected to do GET, and without that any coverage is going to be pretty weak at putting the claims from UK medical bodies in context.

 

[Trish]

The article on its own is problematic, but seen alongside the two very clear and shocking stories of the families' experiences, it makes the paediatricians' stuff about needing to force kids to exercise look pretty dreadful.

Thanks to the two families for bravely telling their stories.