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

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

 

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?

 

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

 

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.

 

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

 

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.

 

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.

 

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.

 

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.