BBC News: MP Carol Monaghan leads campaign for new ME treatment

Pretty good article on BBC news website about recent parliamentary debate


“Chronic fatigue syndrome, or ME, is incorrectly treated, lacks sufficient funding and is poorly understood by many in the medical profession - according to an MP who has been campaigning in Parliament to change attitudes.”

https://www.bbc.co.uk/news/health-44568847

 

Pretty good, especially for the BBC, though PEM would have been good to mention - but not bad. I wonder what the SMC's take on it will be. MS quote was classic of course. I think and hope the BBC might be more wary now of gobbling mindlessly from the SMC pig trough.

 

Pretty good, though I'd have liked to have seen some mention of the many scientists who have critiqued PACE. It's not clear from the article that there's serious reason to doubt the quality of study.

 

I just wish SO much that the media would stop trivialising it by describing it as "extreme tiredness" and "As well as fatigue, it can cause sleep problems and muscle and joint pain", as the BBC did there. It makes the illness sound like not really that big a deal. If all I had was extreme tiredness/fatigue, sleep problems and joint & muscle pain, I'd be ecstatic. But it's still fairly good for the BBC, at least it's sympathetic.

ETA: Just saw this - yes, agree 100%.

 

https://twitter.com/user/status/1011195694609260545

(BBC Health News has 2,3 million Twitter follower)

https://twitter.com/user/status/1011206053458075649

 

Does seem like she's doing her best and it would be good for our organisations to build a good rapport with her.

 

Thanks for the joke Mike, you do know how to tell them.

 

Reasonable

NHS diminishes the illness in Its description

The reason why PACE is criticised by Carol was sadly missed out , it goes beyond just contradicting the outside patient experience. The trial was a fix, Michael can still spin ideas that GET isn't being done correctly outside his trials and that if it was we could see moderate benefit generally. That's untrue and a harmful myth whilst It is true that GET probably has been applied really badly in the community.

But saying that, for the BBC it's a pretty good article for the public to read. Low funding for biomedical research was highlighted and the patients words themselves conveyed our predicament

 

https://twitter.com/user/status/1011227722616659968

 

Yes, a better comedian than scientist maybe.

 

I thought this bit interesting:
"A NICE spokesman said: "We do recognise the controversy about the currently-recommended treatments and will discuss with the expert committee, once appointed, before deciding on any action prior to the completion of the new guideline."

So they will at least look at the possiblity, who knows their lawyers might even advise it wise to remove the current recommendations early(?) guess it depends on who the 'expert committee' are.

 

I think that it is a pretty awful article. She did a very poor job researching her own question.

We need to tweet the author (@laurelives) and her editor (@BBCHughPym) and tell them!

 

If reaching out to journalists with suggestions, it's worth doing so gently & positively.

 

It is a shame that the well articulated pace criticisms weren't printed, but I'm not sure if thats more BBC unwilling to Print something controversial against the establishment line than not knowing the material. Ultimately at the top there seems no one who Can take on PACE except NICE. I suspect the letter of retraction to the lancet isn't worling because a lot of signators are abroad. As an MRC funded paper they're another body that could but don't act.

Something I've not seen discussed , how did the PACE team get their change of protocol half way past reviewers with the flaws and obvious likely change of results and who were the reviewers?

 

This articel may not be perfect, but it's a hell of a lot better than the BBC's previous track record, and I think it should be recognised as such. Slamming everything just because it's not ideal can be very counterproductive. Why hammer people who show promise of becoming good advocates for us, but instead turn them against us at the outset, by being churlish and offensive unnecessarily.

 

https://twitter.com/user/status/1011343921509781504

https://twitter.com/user/status/1011345041384706049

 

I agree, but wanted to note that @kmclellan didn't say we should be churlish! Good for us to all remind one another to be cautious with displays of irritation with problems like these, but I didn't want @kmclellan feeling like they were being ticked off for something.

 

Yes, rereading my post (including typo!) I can see it sounded accusatory rather unfairly - sorry @kmclellan. I guess I'm just concerned we must strive hard to never seem churlish in such situations, no matter who is making a statement - it can be an easy trap to fall into, and so damaging for us.