BBC: Chronic fatigue syndrome treatment 'should be withdrawn'

Chronic fatigue syndrome treatment 'should be withdrawn'

http://www.bbc.co.uk/news/newsbeat-44004882#

A common treatment for chronic fatigue syndrome should be scrapped immediately, according to one of the UK's leading experts in the illness.

Dr Charles Shepherd says graded exercise therapy (GET) can actually be harmful to some people.

He argues the idea of getting patients to do increasing amounts of exercise can lead to serious relapses.

Other health experts disagree and say GET is both proven and a safe method of treatment…

 

Also see the thread for the documentary here, https://www.s4me.info/threads/bbc-n...tary-available-from-tuesday-8th-may-6am.3946/

 

I am pretty sure that people who have been wrong about ME/CFS constantly for the last 20 years should not be considered experts...

 

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.

 

But the point is that the study didn't work for any of the patients in the trial (whether CF, CFS or ME) and that's an easier argument to make and back up with the data. It's much harder to say one group of subjectively determined patients is different from another without objective evidence to separate the two.

Yes, there are issues with diagnostic criteria, but they're part of the larger picture of poor methodology. It's easier, and more efficacious, to simply point out it's a bad trial and then explain why, with data.

Focussing entirely on diagnostic criteria (which are applied subjectively) makes it a debate about opinion rather than fact. Focussing on weak methodologies and bias is easier to prove.

 

@adambeyoncelowe I don’t mean it should be one or the other, I just believe it’s another factor in all this but it’s never mentioned. Maybe this is more relevant in Norway, where the discussion is so bitter and polarized even between patient groups (Recovery Norge/LP vs biomedical/NMEA).

 

It's certainly part of the issue, but I think it'll disappear soon, once we have better confirmatory tests.

However, when it comes to the news, there's often a strict wordcount or running time. That means they can only focus on one thing at a time. It's easier to mention the trial with broad strokes than to go into the detail (which sadly, is what keeps happening).

What we really need is a Dispatches-type documentary that picks apart the trial. Maybe that can be @JenB's next big crowdfunding campaign. Or one for the UK charities to work on?

 

I notice that the "leading ME researchers and clinicians" are nameless. This is the first time I've seen this from the BBC in this context (as far as I can remember). It suggests to me that the BBC might be falling out of love with them.

 

Not by calling them leading. It just allows them to sound authoritative when theyre not.

 

in other words the SMC, and their chums who conducted the 'research' and whose careers were built on these findings says:........bla bla

 

Just checked, http://www.sciencemediacentre.org/working-with-us/for-journalists/roundups-for-journalists/, and there is no official SMC alternative facts release (yet). Which isn't to say that there wasn't anything behind the scenes of course.

 

I think BBC are capable of producing establishment defending stuff on their own.

 

What does it mean that anonymous experts are quoted in defense of GET?

 

Presumably the BBC contacted an individual or a group of people who would provide balance, which should be the norm anyway.

The problem I have with it is the lack of transparency over the identity, therefore the integrity/qualifications, of the people whose views were sought; SMC, anyone?

The fact that a statement was released, with no name attached (news media should be more inquisitive), indicates that they want their say but they do not want debate and they want the last word. This would tell me that they believe they're losing. The 'harassment' card doesn't win now.

 

There seems to be a problem with "a statement" from "some leading researchers". What could be the process by which the BBC obtains such a statement from a group acting in concert. Does anyone believe that they contacted one researcher who phoned his friends to agree this? I agree with those who think the SMC has simply gone undercover, but that is in itself interesting.

 

Yes, there appears to be a problem here. Given criticisms of the way the BBC has used the services of reporters with ties to the SMC, to use the old Private Eye line, 'I think we should be told'.

 

Anyone with enough cog function to write a coherent letter of complaint to the BBC pointing out that if someonenis touting themselves as an expert they should be doing it openly?

 

Could it be that rather than seek a response to this new intervention the been is simply quoting the response on a previous occasion that some similar point was made. Does anyone recall what was the last occasion that a group of alleged experts issued such a statement?

 

Google didn't bring up anything old, so I'd guess it's new.

 

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.