BBC: Chronic fatigue syndrome treatment 'should be withdrawn'

inox said:
I actually think part of why the debate is so polarized in Norway is the focus many patients advocates have had on diagnostic criteria - we haven't been able to get an actual discussion on the science and methodes used in this studies, which could "prove" anything. Instead we have an polarized debate about opinions, where you can't go forward - until the actual disease mechanismes are uncovered. I think we really need to start talking about the metholodigally flawes in the "science" itself, to get the message across.
Click to expand...

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.
 
Last edited:
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.
 
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.:banghead:

eta:
Social media and email

Our email address is newsbeat@bbc.co.uk. You can get in touch through Newsbeat's Facebook page or find us on Twitter - we're @BBCNewsbeat

Want to make a complaint?
All complaints about the BBC, our programmes and services should be sent via the BBC Complaints website.

BBC Complaints Form
 
Last edited:
adambeyoncelowe said:
That Lizzie irritated me. not about trying hard and being positive.
Click to expand...
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
 
andypants said:
Why is it never mentioned that maybe we are looking at two different groups of patients?

Oxford applies to 1-2% of the population, while CCC applies to 0.1-0.2%. Even if we consider clueless physicians who don’t use the criteria correctly, and even if these criteria are not perfect, it should be obvious that data from the 10% ME/CFS-sufferers would get lost when studied together with the 90% CF-patients. It sucks for the people who are struggling with CF too that there’s so much fighting, they could probably do with better targeted research too. That divorce is long overdue.
Click to expand...
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 :emoji_face_palm:
 
Cinders66 said:
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.
Click to expand...

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
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom