BBC: Chronic fatigue syndrome treatment 'should be withdrawn'

Sure, but one of those flaws is to say you are researching ME when in reality you are researching CF.

 

Some people showed us evidence of something so we asked people who didn't agree with them and they said they didn't agree.

 

Prof Sharpe popped up at lunchtime with a soundbite to ensure that people can continue to benefit from GET as it works ....

 

Sadly, I have noticed this in the Norwegian debate as well which is a shame.

The entire problem is the ''but some patients might benefit from CBT / GET myth''. Which sadly relies on the myth that PACE is able to show that some patients who have chronic fatigue, but not ME, might very well improve with CBT / GET. Thing is though, if you look at the results it is clear that no one seems to actually benefit from CBT or GET, even the patients that shouldn't be in the study at all don't seem to get better if you just look at objective measures. In fact the way this form of CBT and GET is applied I wouldn't be surprised if the treatments actually wouldn't help anyone. Of course, that's what you get when you have a treatment based on the fact that patients are crazy.

 

On the radio? Can you remember when/the details?

 

It's newsbeat radio 1 on about 12:50

 

The newsbeat program on this 12:45 wasn't so hot. One case study on there called it CF, suggested that there's hope if you really want to get better and it doesn't last for ever etc. And there was talk of getting people up and about and used to being mobile again ( sounds so easy) with GET and Michael Sharpe popped by saying it was all we have (and whys that?!). No recognition of energy production issues or of ME as life long condition. We aren't breakIng through like this. I personally wouldn't bother arguing against GET in the current U.K. media formats on offer as it doesn't work, unless you have time to quote workwell foundation research, IOM SEID name etc, it's just they say yes to rehab, they say no and even then it can sound like we either need pacing or rehab whereas we actually need medical treatment. I personally would have gone big on research funding in the media this awareness week but I suspect t MEA & AFME are tied in with the CMRC on this and are waiting to see if the "respectable channels " route comes to anything now CMRC have moved, rather than promoting patient lobbying, which is why they never mention it in a direct challenge to the establishment way.

 

Is there a facebook page for radio 1 - comment or link to emma donohoe video?

 

The piece starts at 6:25 here: https://www.bbc.co.uk/programmes/b0b0xjzy

Not listened to it yet myself.

 

Don't these reporters do any research of their own? It isn't rocket science that Michael Sharpe would say GET is a safe treatment that works for some people when he is one of the leading authors of the PACE trial.

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That Lizzie irritated me. It's not about trying hard and being positive.

 

Sounds good until you go back and remember earlier days when the 'balance' across BBC reporting was all BPS all the time and people speaking up against the PACE trial were militants/nasty people/crazy etc

 

And we dont all get better. To be fair calling it cf and her knowledge may have been formed by the fatigue clinic she was no doubt under - (Crawley?) so she probably has never looked beyond that and AYME for info to learn about ME and all it's stages, severities and prognosis

 

I find it bizarre that patient Lizzie is being criticized here for mentioning she suffers from chronic fatigue since that's a major symptom of ME/CFS.

Bill

 

Chronic fatigue is also a major symptom of cancer. But chronic fatigue is not cancer.

 

Is Lizxie the same girl interviewed with EC when lightening process trial was reported?
I can' t remember the details, but it was a similar presentation of info..

 

I find this a disturbing response. Lizzie mentioned a major symptom of ME/CFS and is being criticized for doing so.

Seems very unsupportive to me.

Bill

 

The way cf is used like that is as an alternative name and a bad alternative name as it is reductionist. Most people aren't stuck in bed just with CF.

 

This is probably by design, if you can get a population that responds to a therapy into a trial with people who don't then you raise the responder curve. "Science" by intentional, hidden in plain sight fraud

 

I disagree. She was explaining that she suffers from exhaustion and chronic fatigue in the context of having ME.

I can't imagine a person with cancer getting criticized on a cancer support forum for saying that she was overcome with exhaustion and fatigue in a radio interview.

I don't find this sort criticism is kind towards those suffering from a terrible illness.

Bill