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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in

Cinders66

Senior Member
Messages
494
Personally I woukd have liked criticism of LP to be put in the context of a Systemic exertion intolerance disease framework with it being understood and proven that exertion exacerbates symptoms and is its hallmark. Therefore any process that claims to be able to over ride symptoms with the mind and discourages pacing etc as being negative as I've seen reported, is a risk. Even on YouTube I saw patients feeling better on day one and thinking it good to go out and do things they've not done in ages, on top of a Tiring course. They claimed day 4 to still be better but How many of us have had periods of that in our illness where we didn't pace feeling better and do more then get the crash. You can get artificial highs sometimes if you push but then you can crash. I respect that the trial included long-term follow ups not short- term boosts only but it's a risky area and I bet many families will leap on this, possibly without due caution. In uk media, especially with the CFS name, still not enough about PEM is getting out there so people think it's not harmful to push the fatigue.
 
NHS choices have an article which is generally supportive of the LP and they have a history of supporting the BPS view. After the PACE long term follow up they insisted that it showed positive results for CBT/GET despite it being a Null result.

http://www.nhs.uk/news/2017/09Septe...th-chronic-fatigue-syndrome-study-claims.aspx
This can be rated at the bottom of the article, these are the results so far but extra ratings can only help. No sign up necessary.
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Messages
2,158
NHS choices have an article which is generally supportive of the LP and they have a history of supporting the BPS view. After the PACE long term follow up they insisted that it showed positive results for CBT/GET despite it being a Null result.

http://www.nhs.uk/news/2017/09Septe...th-chronic-fatigue-syndrome-study-claims.aspx

Just read the article. If feels journalistic rather than scientific. The fact that the only references listed are the journal article itself and the newspaper articles about it is a pretty damning. Who writes this stuff?

Edit to add: Worth visiting to post a negative rating.
 

anni66

mum to ME daughter
Messages
563
Location
scotland
Exercise increases inflammation. However, one of the main features of inflammation is that the tissue swells with fluid. Exercise pumps that fluid out so the effects of exercise on inflammation are usually apparent following a later period of rest during which the fluid build up is NOT pumped out.

Everyone is familiar with this. You twist an ankle. It gets inflamed. If you keep walking on it it tends to loosen up a bit and you find you can get back to the car or to the loo. But if you sit around resting it the next time you try to walk the ankle will not even bear your weight - until you have loosened it up again with some careful getting going.

So in rheumatoid arthritis if the patient rests completely inflammation tends to settle. If they exercise they loosen up as they are doing the exercise but they are stiff on waking up in the morning. They are also often stiff after lunch having had a break from activity.

And since there is no inflammation of this sort in ME Dr Crawley is talking complete and utter nonsense right from the start. She is beginning to garble her ideas to the point of being ridiculous.
From the selection criteria it' s likely a majority if the kids didn' t have ME. If you don' t screen on basis of PEM, you don' t gave a cohort if kids with ME.
 

SamanthaJ

Senior Member
Messages
219
Just read the article. If feels journalistic rather than scientific. The fact that the only references listed are the journal article itself and the newspaper articles about it is a pretty damning. Who writes this stuff?

Edit to add: Worth visiting to post a negative rating.
At the bottom of the article it says 'Analysis by Bazian'. The Bazian website testimonials section is 'interesting':

http://www.bazian.com/about_us/testimonials.html
http://www.bazian.com/about_us/testimonials.html
Simon Wessely, Professor of Psychological Medicine at the Institute of Psychiatry, King’s College London, and Honorary Consultant Psychiatrist at King’s and Maudsley Hospitals

“Whilst overall the media did a pretty good job in reporting the paper […] they found it difficult to get the most important message of the paper across. Not so Behind The Headlines. Within hours appeared an elegant, detailed and clear outline of our paper, its strengths and weaknesses, and its main messages. And they were also able to immediately comment on one or two of the more inaccurate headlines as well. I wish I knew how they did it, but I hope that they continue in the same vein. I have learned also my lesson – now if I want impartial, swift, accurate and succinct analyses of recent major research, and want to know what it really means, but don’t have the time to turn to the original paper itself, I know exactly where to look.”


Fiona Fox, Director, Science Media Centre

“Both the Science Media Centre and the journalists we work with find Bazian’s analyses extremely useful; they help to put a scientific study into context, making immediately clear its strengths and limitations. The “Behind the Headlines” service is particularly useful not only to the public and health professionals, but also to those working in science communication and science media. It is a great source of information and analysis about the biggest health stories of the day – showing where and how they were covered in the media, and providing much needed background on where they came from in the first place. Many specialist health reporters follow the service, using examples of previous stories covered to help explain to their newsdesks why the context and rigour of scientific studies are important.”


Katherine Jarman, Health Producer, BBC News

“I find it very useful to read Bazian’s views on a study's strengths and limitations.”


Lawrence McGinty, Health and Science Editor, ITV News

“I think Bazian’s assessments are excellent and hit the right top notes. […] they could be fantastically useful in either getting a story on or, more likely, preventing scare stories.”

If Bazian is not officially linked to the SMC it looks as though it might as well be, and seems to be being paid to write this sort of propaganda for NHS Choices among others. I haven't heard of them before - has anyone else? Seems like a name to watch out for.
 
Messages
15,786
If Bazian is not officially linked to the SMC it looks as though it might as well be, and seems to be being paid to write this sort of propaganda for NHS Choices among others. I haven't heard of them before - has anyone else? Seems like a name to watch out for.
They did the hatchet piece on the PACE long term followup as well. The author identified himself on Twitter, and had previously made very disparaging comments about ME patients. Neither Bazian nor the NHS gave a damn about the inaccuracies or bias.
 
Messages
13,774

user9876

Senior Member
Messages
4,556
Pretty sure he was the author. Maybe they're happier if Bazian calls them editors instead of "regurgitating monkeys with typewriters".

From this blog http://blogs.nhs.uk/choices-blog/2016/07/25/a-recipe-for-success/ July last year

Our Behind the Headlines team, led by Gerard Blair, produces daily health news stories that also lend themselves well to social media.

So looks like the journalist who promoted CBT/GET from a null result and at the same time was trying to discredit ME patients with accusations of death threats (not at all stigmatizing!) is now in charge of this section.
 
Messages
1,478
Does it matter?
We cannot assume that those with clinical depression will necessarily have a stronger self reporting response than other conditions.

Very few people are convinced by the "death by many small cuts" type of argument. Most people see it as arguing for the sake of arguing.

Why bother with lesser reasons when there are much bigger problems - it is a quack therapy and the trial results are untrustworthy as they are subjective self reports in an unblinded trial of an intervention that explicitly tells patients to answer that they are doing better, even when they are not.
I genuinely have no idea what you are arguing here.

I guess everyone wants to slag it off for one particul reason rather than take it apart piece by piece. I agree it's not worth arguing over...the paper is a piece of shit we can all agree. I was just trying to be balanced in the critique. I'm ducking out of this since I have about half a teaspoon right now.
 
Messages
2,391
Location
UK
Just picking up on the placebo response, I don't want to divert the discussion into placebos but the Prof from the SMC said "this could be due to placebo which would still be GOOD news."
Of course if a condition really is all in the head, then a placebo effect may work to break a vicious circle, and I'm guessing this professor has swallowed/promotes that line. But for a biomedical condition, it's pretty dumb.
 
Messages
2,391
Location
UK
For any NHS-approved treatment, is it legitimate for the details of that treatment to remain company confidential, and for patients and practitioners to be sworn to secrecy on the methods involved, such as seems to be the case with LP. Is it in the least bit legitimate/legal/ethical to run a trial, especially on children, using a treatment that is explicitly hidden from scrutiny? Feels like so many red flags to me, and could any of this provide a viable standpoint from which to raise formal objections or proceedings?
 
Messages
2,391
Location
UK
Phil Parker and all the BPS practitioners seem to like parading the "randomised controlled trial" aspects, as justification in itself that such trials must therefore be perfect, the gold standard. But like a million and one other gold standards, there are endless ways of thoroughly undermining their integrity to the point of being worthless.

I also note that RCTs are apparently supposed to be quantitative. But to me that seems open to massive abuse. Just taking rubbish readings (which can include properly-quantized values, but from the wrong system variables) and turning them into numbers, seems to be all it takes in order to justify a trial as quantitative - so long as you get numbers to crunch. It doesn't seem to matter whether the system variable being read makes any sense or not for the experiment you are doing. Let alone then blindly treating some of these numbers as if they can all then be treated as sitting on nice linear scales for simplistic comparison etc.

In computer controlled systems there are many continuously variable (analogue) variables that get quantized, so they can be processed digitally. But just turning analogue values into numbers does not, of itself, magically grant them gold standard validity. If you measure a system variable, pressure, temperature, whatever, and are not really measuring what you should be measuring, all the digitization in the world is not going to change the fact you have made a pigs ear of the design and it's going to be a mess.
 
Messages
66
The Today programme needs more than a harrumphing John Humphrys

The BBC Radio 4 listener whose blood pressure isn’t regularly sent off the charts by the Today programme is a rare one indeed. Young people declare it too old, while old people say it’s too young. No one likes John Humphrys apart from the scores of people who can’t get enough of his harrumphing, and would picket Broadcasting House in the unlikely event of him being crowbarred from his desk.

Pity the poor mug patrolling the programme’s Twitter feed and wading through the torrent of indignation and invective while still on the first coffee of the day.

Lately, however, the ire levelled at the programme has gone up a notch. The extra helping of irritation has largely been directed at Sarah Sands, who was appointed editor in January following eight years in charge of the London Evening Standard. Among the complaints thus far – and it’s been said that many are coming from inside the network – are that it has become lightweight and magazine-ish, that fashion and arts stories are being given undue prominence, that the political argy-bargy has been toned down, and that it is failing to set the news agenda.

In any case, the big interview slots have, in recent weeks, occasionally been turned over to cultural figures..... This, apparently, is a bad thing for those who can’t enjoy breakfast unless it is soundtracked by a barking match between Humphrys and whichever hapless politician has been frogmarched to Broadcasting House, or between the advocates in one of the frequent issue-based items pointlessly reduced to adversarial “for” and “against” positions.
 

Jonathan Edwards

"Gibberish"
Messages
5,256

Presumably the author of this piece in the Guardian wants Today to follow the Guardian's example of having more 'girls' stuff' (as the author herself puts it). Presumably to offset men's interest in politics and the environment and health stories we need stuff on whether big handbags are a good thing to have any more. This is the drivel that has turned the Guardian into a wet rag after the genuinely courageous journalism under Rusbridger.

So Esther Crawley is allowed to simper about her trial but Charles Shepherd has to fight to be allowed to say his piece in defence against her slander. Humphrys can be a bit blinkered at times but if someone says something he is not expecting that is interesting and convincing he has the decency to take interest.
 
Messages
78
I think it does bring UCL into disrepute but I do not know who would care these days.
i agree, as a graduate of UCL which was just published as one of the top 20 universities in the world, I was horrified to see people from there quoting about this in a positive way.
Could pass on to the provosts PR department saying it doesnt do much to enhance the firward thinking excellence of UCL being dragged backwards in the national press by these people.
 
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Londinium

Senior Member
Messages
178
Presumably the author of this piece in the Guardian wants Today to follow the Guardian's example of having more 'girls' stuff' (as the author herself puts it)

That quote had my wife harrumphing worse than John Humphreys when he's faced with inconvenient truths about Brexit. As she put it: 'why are stories about hospitals and prisons now considered solely to be boys stuff?'
 
Messages
78
In case anyone is looking for it now it's off the BBC website, I posted a recording of Crawley's 10 minute interview on the Today programme here: http://forums.phoenixrising.me/inde...onic-fatigue-26-sept.54596/page-9#post-914180

If anyone else has recordings of this stuff, or is doing a transcript, it would be good to make that publicly available.
I sent a link to the programme to someone and just clicking on it again I still get the whole programme - http://www.bbc.co.uk/programmes/b095ptl7
So if there is not a full recording and someone can do it then it looks like it's still available. If not I will ask techie partner if he can do it, or if someone tells me how they do it then I will get the whole thing - don't know if you ripped the other clip you have or recorded it on another device?