Boy said to have 'CFS/ME' interviewed on BBC's 'The One Show' 26/02/2019

ME was mentioned on The One Show on Tuesday – it’s on YouTube at -

https://www.youtube.com/watch?v=lJ8d6LV-slI

- starting at 22.27 minutes in.

Don't shoot the messenger!

 

The bbc like doing this sort of coverage

 

It's great that he is doing so much better, am really pleased for him. But wow that is sooo damaging for all the other children who's illness progression is not the same, & for whom 'building confidence' will make not the slightest bit of difference.
Bracing myself for all the 'helpful' comments from friends.

 

Given that it seems there's a relatively high natural rate of recovery amongst young people classed as having CFS (80-50% - although I realise there's often problems with this research and the way that people are classed as having CFS) it's pretty dodgy to present an individual story as showing that any one thing led to recovery. The BBC should be aware of this, and the problems with prejudice and quackery that surrounds CFS in the UK.

Also, not to sure about the wisdom of promoting boxing as an effective intervention for the range of neurological conditions that they mention. Blows to the head may be of occasional benefit, but it's probably worth being cautious with them.

 

Reminiscent of Ruqsana Begum, who lost her job due to ME, but is now a kickboxing champion who manages her condition "with a strict diet and training regime".

https://www.s4me.info/threads/woman-with-me-won-world-kickboxing-championship.1340/

 

Haven't the energy to watch the program right now, but this thread, and another on kids recovering, but their parents saying the kids are worse than they think, reminded me symptom/function diaries can be very helpful.

IME keeping a symptom/function diary is very helpful in ascertaining whether one has improved, recovered or regressed.

I think we often forget examples of how we are doing - what dysfunction we still have.

If memory serves, there has been a study about pwcfs which demonstrates this community may tend to overestimate how well we are doing. A symptom/function diary can be really revealing, and remind pwME how they are really functioning.

 

It’s fine if he recovered, fine if he had anxiety inhibiting him with or without actual CFS, it was the bbc who should be Aware the biggest risks to anyone with ME is a) being assumed their issue is mental health b) people thinking they can “just” think and exercise the way out of it. So regardless of the “case” this is the second time the one show has dealt with a juvenile “CFS succes story” this way. It’s like featuring An annorexic who says was successfully lured back to eating when she discovered gourmet foods or something, see it’s really nice isn’t it actually, isn’t this wonderful folks, this child has rediscovered the joy of food again thanks to chef robins delicious meals. As if that’s representative and won’t now get people with eating disorders treated worse.

 

What I object to is that the whole piece was presented in the context of mental health care. The casual implication is that he had had a mental health condition, ie. ME is a mental condition.

Good if he got well and he may have had some anxieties to overcome on the road to recovery, with which boxing may have helped.

The OneShow does not always do subtlety but this is misreprestentation and would be the subject of the next day's "This Morning", if on another health subject, and Holly and Phillip would be looking very serious indeed.......And rightly so.

 

Yes I didn’t see this issue taken up by charities although I saw some people say they’d written to complain. I’d be interested in the reply if anyone did here?

 

Only just got the energy to watch this now. I'm really disappointed in Louise Minchin for putting out such a rubbish overview and interview. I used to think she was one of the better BBC journalists. No more. I hope that someone has the energy to reach out to her and explain the damage her broadcast may do to young people with ME. Lets face it, Crawley would probably love to introduce boxing as part of her treatment regime.

 

To me it seems likely that lots of people with different sorts of problems are likely to be lumped into the ME/CFS classification, and that some could have problems that are classed as 'mental health'. It's really not clear what it means for something to be viewed as a 'mental health' condition anyway. Regardless, presenting an anecdote about someone suffering from a condition with a high natural rate of recovery as evidence that a particular intervention was what changed their health is problematic. People who suffer from depression, anxiety, etc can also end up being stigmatised by similar examples of poor journalism. Media companies need to take a more rigorous approach to the way they report the experiences of those suffering from stigmatised health problems, mental of physical.

 

i know of several individuals who have written to the BBC.

I guess it will be re-rn on the nigh of Comic Relief as well.

 

https://twitter.com/user/status/1100833146835296256

https://twitter.com/user/status/1100652570228506624