Guardian article "I had CFS. the Lightning Process at least offers hope."

[Snowdrop]

How about a mass blocking of Guardian twitter accounts.
We need a dedicated section (thread) for discussing what comments to make based on specific articles that will continue to come out like this one.
So that we can not all go to The G site block it's feed and have dedicated people who don't block it share whatever news is relevant. Or some other suggested ideas for making our dissatisfaction The G's problem.

 

[Countrygirl]

Almost looks like Theguardian is actively baiting all the dangerous militant ME/CFS activists out there with all these quackery articles. Better watch out, there will be riots soon, and someone might have a soiled sock thrown at them if things keep on escalating!![/QUOTE

..........................correction @Rick Sanchez

....................................................we only throw coffee cups...............not soiled socks................that is far tooo violent for us 'activists'.......................

................................... .(if you recall )

 

[wdb]

Thought this comment was very well written:

JonathanWest
3h ago
Contributor

I've had a look at the paper. There are a number of issues which are extremely obvious if you've ever read Ben Goldacre's "Bad Science".

The first is that the trial is very small. It is so small that it would take a huge difference in outcomes to be fairly sure that the difference wasn't down to mere chance.

The second is that although the groups were randomised, there was no attempt to control for the placebo effect. The comparison was between existing treatment + lightning programme and existing treatment alone. There's no way that which programme a patient is allocated to can be hidden from the patient, and so no way of assessing how much improvement might be down to placebo effect rather than lightning programme.

Third, the improvements do look somewhat marginal, and there are quite a few things measured in the SF-36 questionnaire, and there doesn't seem to have been any attempt to assess the statistical significance of the data in the light of this. If you're testing for multiple outcomes, there is a much increased chance that one of your outcomes shows what initially appears to be a statistically significant difference. In fact there seems to be no mention of confidence intervals and therefore no attempt at all to assess whether the results are statistically significant.

We normally think of a statistically significant outcome as being one where there is no more than a 5% probability of seeing that outcome by chance. But if you're measuring 36 different things, then there's an 85% probability that one or more of them will fall into the 5% bracket, just by chance.

As far as I can see, the combination of multiple outcomes, small sample size (100 patients is a verysmall trial), no mention of confidence intervals and lack of control for the placebo effect means that the numbers obtained by the trial are essentially meaningless.

I welcome research into ME. I would like to see more of it. I'm aware of the suffering it can cause. (A close relative of mine suffered from it.) But I regret to say that it appears that this paper has not made any significant addition to our knowledge of it. It merely serves to give false hope to the suffering patients who are looking for something that will help and who do not have the statistical knowledge to realise how meaningless this paper appears to be.

 

[NelliePledge]

would be good if Ben Goldacre picks up Jonathan Wests comment and actually reads it...................


and I really hope once he stops turning in his grave my Dad will be haunting the Guardian's "science journalists" and keeping them awake at night

sorry flippant second comment but you never know about the first

 

[Mrs Sowester]

I'm not certain The Guardian do use pwME as clickbait, if that were the case they'd leave the comments open and get more traffic. I think they've fallen for the abusive patient myth.

They moderate comments that are critical of the paper btw and quotes that are over a certain word length - I've fallen foul of those rules before.

 

[alex3619]

Almost looks like Theguardian is actively baiting all the dangerous militant ME/CFS activists out there with all these quackery articles.

If so its called clickbaiting. Get all those "militants" to click on their article, generate traffic, and earn revenue from associated links.

 

[alex3619]

I'm not certain The Guardian do use pwME as clickbait, if that were the case they'd leave the comments open and get more traffic.

By closing comments they can still get traffic to the main article but without all the posts criticizing the poor journalism.

 

[Barry53]

ME is so much more than the symptoms – the truly devastating thing about it is how it makes you feel about yourself, as anxiety, depression and illness blight your “best years”. If this therapy can help stop the slow creep of hopelessness, or the submission to a condition, then it’s worth trying. Can you think yourself well? Maybe not. But the placebo effect is a powerful thing and believing there was a chance of getting well, even for a while, would have kept me afloat when I felt I was drowning.

This is the crunch statement. Maybe the above-acknowledged placebo effect can - maybe it can't - help with all the secondary psychological trauma that ME brings to a young person's life. And although the article is carefully packaged to infer it is more than that, the above paragraph is their get-out-of-jail card, because they know it cannot fix the real illness that is ME. But of course they want readers to believe that ME is nothing other than psychological.

Edit: Further comments. "If this therapy can help stop the slow creep of hopelessness, or the submission to a condition, then it’s worth trying." And there we have it: There is a condition that LP is claiming to help you cope with, not cure. "Can you think yourself well? Maybe not."
[My bold]

 

[Barry53]

Feels like the BPS crew are not so much trying to shift the goalpost, but rotate the whole pitch round ... and end up pointing at their own goal.

 

[user9876]

Thought this comment was very well written:

There is a bit of a misunderstanding here in that 36 things are not asked but 10 because its only the physical function subscale. But I do like the idea of applying a correction because each of the questions are different (albeit not-independent and some are linked).

 

[Chrisb]

An interesting aspect of this affair is its timing. How long does it take to write such an article, submit it for publication, have it approved for publication and published? My suspicion is that the time frame would be too long for this to have been written merely in response to the trial result publication, which suggests that it was written and submitted in anticipation of the "trial" outcome. Which raises further interesting questions.

Is the Guardian manipulating the news agenda, are they just not bright enough to know when they are being manipulated, or are they happy to acquiesce in furthering someone else's agenda?

In any event the "newspaper" is made to appear foolish. One supposes that advertisers must be impressed.

 

[Jonathan Edwards]

An interesting aspect of this affair is its timing. How long does it take to write such an article, submit it for publication, have it approved for publication and published?

Your suspicions may well be correct. However, I suspect the turn around time for a professional journalist is about five hours. An interview takes half an hour, with the recorder running. Transcribing that into a piece would take about three hours. Phoning the relevant people and getting editorial approval might take an hour and a half. I have done interviews for Today and PM with this sort of time frame.

 

[Chrisb]

Your suspicions may well be correct. However, I suspect the turn around time for a professional journalist is about five hours. An interview takes half an hour, with the recorder running. Transcribing that into a piece would take about three hours. Phoning the relevant people and getting editorial approval might take an hour and a half. I have done interviews for Today and PM with this sort of time frame.

That is interesting. Would that be in circumstances where you have been contacted by the news organisation with a request for an interview and they are working to fill a slot in a particular program? I suspect that matters would be different if the impetus did not come from the newspaper.

I suppose what I am trying to get at is, does it look as though this piece was solicited by the paper, or was it submitted to them speculatively?

It certainly would appear to be odd for a supposedly serious newspaper to have commissioned such a piece.

 

[Mrs Sowester]

are they just not bright enough to know when they are being manipulated

I'm convinced they've fallen for the 'abusive patients won't accept they have a psychological illness' line.
Hiding this piece in the Opinion section and only having pre-moderated comments open for a few hours is definitely not their usual MO.
They hardly ever pre moderate comments and most of their clickbait articles have comments open for a week.

 

[sarah darwins]

are they just not bright enough to know when they are being manipulated

yep. The Guardian is very pro Science with a capital S. It just has trouble understanding that not everything that claims to be Science actually is.

I find I'm not so much upset at any of this as shaking my head in a sort of awed astonishment — the kind you get when you watch Louis Theroux's Weird Weekends. It's pretty amazing to see significant parts of the British establishment sombrely discussing the therapeutic potentials of The Lightning Process. I mean, have they seen the website? All dodgy testimonials ("I discovered I was a genius at getting the life I love") and urgent pop-ups, recommendations from a smattering of daytime TV hosts. The whole thing just screams flimflam.

Seeing this being evaluated by a major university, discussed by 'science' journalists is just ... weird.

 

[sb4]

Thing is, I am pretty sure things like SMILE/lightning will help some people with MECFS but it would also help everyone else who doesn't have it equally as much, so why link it specifically to MECFS unless you went to frame it as a psychological disease?

The guardian is a paper of poor "journalism" IMO, so it doesn't surprise me that this was poorly researched and the wrong conclusions reached.

 

[Barry53]

Thing is, I am pretty sure things like SMILE/lightning will help some people with MECFS but it would also help everyone else who doesn't have it equally as much, so why link it specifically to MECFS unless you went to frame it as a psychological disease?

The guardian is a paper of poor "journalism" IMO, so it doesn't surprise me that this was poorly researched and the wrong conclusions reached.

i.e. It may help with coping strategies for various physical conditions, but not the physical condition itself.

 

[Jonathan Edwards]

That is interesting. Would that be in circumstances where you have been contacted by the news organisation with a request for an interview and they are working to fill a slot in a particular program? I suspect that matters would be different if the impetus did not come from the newspaper.

I suppose what I am trying to get at is, does it look as though this piece was solicited by the paper, or was it submitted to them speculatively?

It certainly would appear to be odd for a supposedly serious newspaper to have commissioned such a piece.

I don't think any UK newspapers have journalists who understand science. They don't actually understand economics either, but that is a bit different. This is standard fare for the Guardian. I suspect that with the SMILE story coming up on SMC the health editor at the Guardian remembered she had a journalist friend who said she had had ME and asked her to do a quick piece. An arts journalist would be more likely to know than a scientist what things are really like.

 

[HowToEscape?]

They do a a lot of censorship of comments from people with ME and given the criticism they generally allow on articles I think it shows the guardian has a very bad attitude towards ME.

It also shows a bad attitude toward censorship.

 

[skipskip30]

i.e. It may help with coping strategies for various physical conditions, but not the physical condition itself.

Isn’t even that highly debatable for an NLP based therapy?