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

"He said it was good to push James into relapses."

Presumably that statement is not supported by any experiment conducted on James and relies wholly on inferences drawn from other evidence. Surely there has never been any evidence from trials to support such a conclusion. It must be doubtful whether any such trial could be conducted ethically - though that is, of course, no bar to some.

That doctor is worthy of serious scrutiny.

 

Ok the journalist/Editors of the Times could have done better to frame that statement and make it clear how controversial it really is. Although I think it is common to write an article with testimonies and quotes from people reporting a problem and then to end it with a response to the accusations from the agency responsible for the situation.

I think we shouldn't be too focused on the messenger (the journalist/editors of the Times) for telling us how the Royal College of Paediatrics and Child Health thinks. I don't have experience with the UK system but I suppose the RCPCH is spreading that message to doctors and paediatricians with many other means than this press article.

The controversial statement in question is:

The evidence for rehabilitation plans in children with ME/CFS is even poorer than for adults (for example: there aren't any randomized trials on GET as far as I'm aware).

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From memory:

There's the 2005 study by Stulemijer et al. It had a waiting list control and at long term follow-up there was no difference between the percentage of clinically significant improvement in physical functioning and school/work attendance between the two groups (only for fatigue were the results significant).

The FITNET study originally reported spectacular results, but at long-term follow up the usual care group caught up and had similar recovery rates.

Chalder et al. did a randomized trial of family-focused CBT versus psychoeducation where there were no significant difference between the two groups.

I think that's pretty much it. Crawley is now doing two larger studies (FITNET-NHS and MAGENTA) but if I remember correctly both of these compare two rehabilitation approaches so they won't be able to tell us if rehabilitation is effective or not. ​

So even if you don't consider the poor quality of these trials and take the results at face value, there still isn't much evidence that the rehabilitation approach for adolescents with ME/CFS is effective. Therefore the statement by the RCPCH seems unfounded. How do they know that if parents don't want their children to follow a rehabilitation plan that tries to push their limits by exercises, that this "may result in the health needs of the child being neglected"?

Given the testimonies of parents, it is quite likely that their advice is harmful. I hope that patient organisations, doctors, politicians and researchers in the UK will bring this to the RCPCH's attention.

 

https://twitter.com/user/status/1275759390168166401


https://twitter.com/user/status/1275760556952215552


https://twitter.com/user/status/1275761086772514818

 

Well done @PhysiosforME!

 

That is fantastic @PhysiosforME I am soooo glad you guys are around!

 

Thank you @PhysiosforME
the voice of reason is a very skewed narrative

 

It would be wonderful if Gigi's family could provide an interview - for balance.

 

I haven't read the article just the thread.

I'd like to know how the people at the Royal College of Paediatrics can explain how they determine faking* from the real thing. There is no test to determine this. And given that, then there is the problem of causing harm (which they may not acknowledge for 'real' cases at any rate).

As to the question of faked illness (Munchausens) I have doubts as to anyone faking ME. And I expect if anything it is extremely rare. Yet we keep hearing about this happening over and over.

I'm not very clued up as to what's relevant where sometimes but would this be something that Hilda Bastian might need to see with regard to how exercise is being defended? I don't want to tag her in to do more reading unless others think it's on point.

 

I did notice the journalist retweeted @PhysiosforME response

 

The Times' journalist did choose to tell the stories of two sets of parents that the paper's readership is very likely to empathise with (i.e. working professionals), so I see this as them taking a sympathetic approach to PWME (and carers/parents).

 

Gold at one end and sh*t at the other?

 

The dissonance may be a reflection of the different perceptions of ME between some journalists and the editorial (management) department. Or just a reflection of management now playing for both sides.

 

This doctor presumably thought that pushing the patient into relapses was a form of acclimatization or desensitization. He was confident that he understood the mechanisms that were maintaining the illness.

 

If that doctor really did use the word "relapses" in that context, then I would think the day may come where he might need to talk to a lawyer.

 

I agree with Philipp and others that this is potentially a complex issue with two sides. I have taken the view that I do not necessarily know enough to judge the balance. However, the quote:

“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.”

really says it all. If this is the view of RCPCH, in the context of the evidence as we know, they are in the wrong. Moreover, they are encouraging unethical practice. Others may also be at fault, in particular private physicians selling phoney theories, but the primary responsibility is for RCPCH to follow the evidence, not the pseudoscience.

 

I agree.

I think the quote is clearly presented as a 'defence' and not the 'truth' - much more time is given to the stories of the patients. I think the journalist framed it well and I think it's really helpful coverage. I actually think it would be strange not to have a quote from the 'other side' and would make the article sound more like a campaign than a piece of journalism and so less trustworthy.

I think @PhysiosforME response is great as always. Let's encourage the Times to cover this more!

 

Unfortunately I can't see this.