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

Can I just quote a slightly edited version of something I wrote in a related thread yesterday?

 

@Wits_End
I got a subscription (free for a month) to be able to follow the articles this week. I'd love to post "Shared" links, but I don't understand how to. I don't see the word "sharetoken" when I try... Can you explain how I go about to do this?

 

I just did the same. You know at the top (on mobile) there’s a share link with an email, twitter icon. If you send an email to yourself, it sends with a share token link. And you can get then go into the email and copy the link. I’m just trying to see if there’s an easier way than sending an email to yourself.

 

Hmm this is not working anymore.

 

Yes, it is someone's concept of balance and rightly in my opinion. It's not like they asked some random alternative person for a quote - this is the Royal College of Paediatrics and Child Health. As an educated reader who knew nothing about the subject, you'd think it strange if medical side of things weren't asked for comment. But, luckily for us, the journalist understands our experience and so has chosen to put the quote at the end and has surround it with stories of patients and precede it with quotes from the Tymes trust and another from Carol Monaghan which means that the reader is already 'on side', sympathising with the patients, and already has the information needed to see between the lines by the time they get to the quote. If he hadn't asked them for comment, the piece would read more like a tabloid sensationalist story. I think it would be counter-productive to criticise him for asking the Royal College for a comment. Better to point out why their comment itself is problematic and provide further sources to support this which is exactly what physios for ME have done.

 

Meh. s'pose. It's certainly now looking as if the journalist is on-side. I'll continue to reserve judgement on the newspaper. My own brand of CBT (Curmudgeonly Bugger Therapy) has served me very well for the last 6 years and led to significant improvement. I'll not be giving it up easily.

 

@Barry see post #23 above. The whole twitter thread from Physios for ME has been reproduced

 

Absolutely - I reserve judgement about the newspaper too. Curmudgeonly Bugger Therapy, very good !

@Barry Sorry, I thought you meant you didn't agree - not that you literally couldn't see it!

 

Oh flip.....you could be right @Tia !
I’ll just climb back in my box......

 

Whatever the motive of the journalist I still agree with Sam that there is a way of reading that directs the reader. What conclusions are drawn from a piece come at the end. Science papers do the same (although they'd benefit from putting conclusions at the top) Pollsters do the same only with the questions they reserve for the end.

It's sad if people see the story as sensationalising. The truth is really more horrible than can be conveyed.

 

Seeing the Royal College of Paediatrics's spokesperson's quote in the context of the other pieces, I think it was helpful for making them look bad. I wish the person was named. It could be worth someone asking the College what evidence is used to guide judgements about when a patient's decision to not pursue treatment with GET is legitimate or not?

I thikn that we're so used to being mistreated that we can be too uncharitable in some of our judgements about journalism... it's understandable given how badly we've been treated by certain countries' media, but it can hurt us if we come across as a group that will always complain.

 

Actually, I don't see any complaining. I see critiquing. Holding journalism to account is something that ought to be expected by journalists. Just IMO.

 

My comment on how we can come across was intended as being a general thing, and a reminder to myself. I don't send notes of thanks for articles that I think are decent, though I suspect that would be a better use of time than complaining about/critiquing journalists who do poor work. When I looked, thankfully there are many patients who are more generous than me on social media though!

 

I agree. Why would you fake the condition that is most likely to end up with you being accused of faking it?

Surely, if you are of an age to drive googling (anything from toddler+ these days) you would do a little research to get maximum return for your faking efforts. So, be you parent or child, of all the conditions you might try ME would be the very last one of the list.

 

Thank you @lunarainbows @Wits_End

I didn't work before but now suddenly it did!

Share token link:
https://www.thetimes.co.uk/article/b8622dbc-b572-11ea-8f3e-e50b85a09cc5?shareToken

 

Share token link to the article :
https://www.thetimes.co.uk/article/3aefe514-b594-11ea-8f3e-e50b85a09cc5?shareToken

 

https://twitter.com/user/status/1275759079978414085
does this help

 

Here's the full thread


Thank you
@thetimes
for putting a spotlight on families suffering unimaginable situations when their children are dealing with ME. We take issue with the spokeswoman for the Royal College of Paediatrics and Child Health

The quote “It can be difficult for parents and children because graded exercise is difficult and can even be painful, especially at first” displays an absolute lack of understanding about the physiology of ME and the potential harm for the children involved

Ignoring the issues with GET and ME, any exercise programme that causes pain should be immediately reviewed. Forcing anyone, let alone a child, to continue with a painful treatment and threatening to report to child services if not carried out, is simply incomprehensible

We would like
@thetimes
to continue their exploration of ME, and suggest they use the resources in our website http://physiosforme.comto find exercise physiologists and researchers who can give a better explanation of the issues around GET

We have a page specifically aimed at parents of children with ME here https://www.physiosforme.com/resources-for-parents

 

It should be incomprehensible shouldn't it. But it's what seems to happen when a certain cabal of psychiatrists presume expertise way beyond their competencies, and have the influence to convince the establishment they are right.

Brilliant support @PhysiosforME, so very good and morale boosting. Sincere thanks.

 

Where a parent to behave in a way which caused continual harm to a child's health, whatever he motive, they would be at risk of reference to social services. Only doctors have that right apparently. Whatever happened to professional regulation?