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List of media stories on tribunal PACE data release ruling

PhoenixDown

Senior Member
Messages
456
Location
UK
Here's King's College own article on pace: http://www.kcl.ac.uk/ioppn/news/rec...g-disability-in-chronic-fatigue-syndrome.aspx

It was written before the PACE trial data release ruling. As you can see it's full of misleading propaganda.

Reducing fear avoidance beliefs key in chronic fatigue syndrome
Posted on 14/01/2015
CachedImage.axd

Reducing fears that exercise or activity will make symptoms worse is one of the most important factors determining the success of cognitive behaviour therapy (CBT) or graded exercise therapy (GET) in reducing fatigue and improving physical function in people with chronic fatigue syndrome (CFS), according to new analysis of data from the PACE trial, reported in The Lancet Psychiatry journal.

CFS (sometimes referred to as myalgic encephalomyelitis, ME) is a condition for which one of the defining symptoms is exhaustion, affecting a person’s everyday life to varying degrees of severity. It is thought to affect around 250,000 people in the UK. Existing treatments for CFS aim to reduce fatigue (exhaustion) and improve physical function (such as an improving a patient’s ability to walk, or to do everyday tasks which most people take for granted).

The PACE trial, published in The Lancet in 2011, examined the effects of three different treatments for people with CFS, compared with usual specialist medical care (SMC): cognitive behaviour therapy (CBT, where a health professional helps the patient to understand and change the way they think about and respond to their symptoms), graded exercise therapy (GET, a personalised and gradually increasing exercise programme delivered by a physiotherapist), and adaptive pacing therapy (APT, where patients adapt activity levels to the amount of energy they have). The study found that people with CFS benefitted from CBT or GET more than from APT or SMC.

In this study, led by Professor Trudie Chalder from King's College London, researchers from King’s, Oxford University, and Queen Mary University of London, used a statistical method called mediation analysis to identify the factors, such as beliefs about activity and physical fitness through which CBT and GET had their beneficial effects on fatigue and physical function. These potential mediating factors were almost all measured halfway through the study participants’ receipt of treatment.

According to Professor Chalder, “Although the PACE trial results suggest that CBT and GET offer safe and effective treatment options for a majority of CFS patients, the improvements seen in the trial were moderate. By identifying the mechanisms whereby some patients benefit from treatment, we hope that this will allow treatments to be developed, improved, or optimised.”

Of all the mediating factors analysed, the researchers found that a reduction in fear avoidance beliefs (fears that exercise or activity will make symptoms worse, which is an understandable reaction to having CFS) was the strongest, accounting for up to 60% of the overall effect of CBT and GET on outcomes. Fear avoidance improved more with GET than with CBT, and improved exercise tolerance (as measured by metres walked in a fixed time) was a strong mediator of GET alone. Other factors analysed (including avoidance of activity, damage beliefs and catastrophizing) were weaker mediators of the effects on fatigue and physical function.

According to Professor Chalder, “Our results suggest that fearful beliefs can be changed by directly challenging such beliefs (as in CBT) or by simple behaviour change with a graded approach to the avoided activity (as in GET). Clinically, the results suggest that therapists delivering CBT could encourage more physical activities such as walking, which might enhance the effect of CBT and could be more acceptable to patients.”

One of the co-authors, Professor White, added, “It is important to bear in mind that this paper addresses how CBT and GET work for CFS. It does not speak to how CFS arises in the first place.”

The study was funded by UK Medical Research Council, Department of Health for England, Scottish Chief Scientist Office, Department for Work and Pensions, National Institute for Health Research (NIHR), NIHR Biomedical Research Centre and Dementia Unit at South London and Maudsley NHS Foundation Trust and King’s College London.

For further information please contact Louise Pratt, Public Relations and Communications Manager, Institute of Psychiatry, Psychology & Neuroscience, King's College London, UK. T) +44 (0) 20 7848 5378 /+44 (0) 7850 919020 E) louise.a.pratt@kcl.ac.uk

For full article and comment see: http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(14)00069-8/abstract
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I've just noticed that the Times article (behind paywall) hasn't been posted in this thread (I can't see it anyway) so I'm posting it here for reference:
http://www.thetimes.co.uk/article/c...uld-be-the-body-trying-to-hibernate-3fzp2zgxv
Here's a link to a readable version of that article.
Actually, that version misses out the second half of the Times article which is about the PACE trial tribunal decision.

The ME Association have a full copy:
http://www.meassociation.org.uk/201...trying-to-hibernate-the-times-30-august-2016/
 

snowathlete

Senior Member
Messages
5,374
Location
UK

user9876

Senior Member
Messages
4,556

Snowdrop

Rebel without a biscuit
Messages
2,933
IMO the times article was a purely awful piece of writing (I read from the MEA website).

It was full of talk about how PwME feel. We feel that CBT/GET trivialised the disease. Well, actually I think it's more accurate to say in general that we think the name cfs trivialises the disease and that CBT is fairly useless as a treatment for ME and GET actually harms us.

When mentioning the dauer state he uses the words 'they claim' which can be read as suggestive of: there is no evidence they're making a 'claim' that needs to be backed up.

Of the study he says: 'more than half of those screened had been told they have ME' that sounds disingenuous. As I understand it the test was robust in it's findings and the sensitivity was 90+%. If you know nothing about the study how does one interpret this statement?

And 'Dr's have to judge if a patients lifestyle and behaviour fit the criteria' :bang-head: OK symptoms of sickness qualifies as sickness behaviour when used in a medical jargon context but here that's not at all what's implied when you read the statement as is. Sickness behaviour/symptoms are nowhere to be found.

Then of course, while PACE can only be lauded this study must be viewed with caution and he provides a handy quote of a psychiatrist saying so. Apparently this will not be a study that is a thing of beauty right out of the gate. It must prove itself preferably with many many other confirmation trials that will all be held with scepticism for a long time to come. (OK that last comment goes beyond the actual article reporting but I'm gonna imply the thinking)

Then 'some sufferers took this as implying that it's all in the mind' Well, NO. There are many many articles out there to read and the BPS, if they didn't initially (I don't recall) have been on record as saying that they thought there was an initial viral (or some other) trigger---but that we then continued to believe we were sick after the sickness was over.
That's where the use of CBT comes in. So not implying. This is how it is. I found that statement particularly insulting.

The use of the term 'bitter arguments' is brought up in the context of talking about patients. Certainly we have reason for how we feel about our treatment. Not a whisper about how the PACE authors have behaved or how vigorously they have tried to fight this, the money they spent.

TW opines that for many years ME patients feel they were being judged. More like lives were ruined, families disowned sick family members derisive comments were normal from people who were friends. But hey, we just felt judged. It was really our own inadequacy and sensitive nature and lack of self esteem. :rolleyes: Oh, and while all this was happening we just happened to be really sick.

On this subject particularly with the british media it is all about HOW they say something. There is a level of subterfuge that seems ever present when reading media reports regarding this illness.

If TW is actually on the side of what science says and what patients have been saying about their experience of this disease than I'd say he's pussyfooting around and not talking straight about what he means by it all.

Perhaps there was more of the article that I could not see (I couldn't tell). But for the above reasons I found the piece ambiguous.
 
Messages
13,774
A legal company has written up the story
http://knowledge.freshfields.com/en...tter&utm_campaign=text&utm_medium=Freshfields

The unfortunate part is them saying


When there was no evidence of that. It was all in Ross Anderson's and QMUL's imagination.

I'm not sure that was so bad. People have said that they'd be interested to hear the views of participants... that could count? While QMUL might try to spin that as angry activists frantically working to track down participants, the freshfields article didn't say that.
 
Messages
15,786
When there was no evidence of that. It was all in Ross Anderson's and QMUL's imagination.
It's not really a problem for us, in a legal summary. It's not being read by people who are looking to form an opinion about ME/CFS or treat patients, just people interested in the legal implications.

And in that legal context, the article (perhaps incorrectly, and definitely without support) suggests that even militant harassers who want to track down and throw eggs at study participants can't be denied the data. It would be annoying in a mainstream article, but in a legal article regarding open trial data, it simply gives the impression that even actual intent of harassment isn't an excuse to play hide-the-data.

So that article contains an error which works in favor of data sharing :D
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
• Although the trial had been criticised, and there were so-called ‘activists’ who wanted to contact trial participants, there was no evidence that this would increase the risk of identification from ‘remote’
the word "activists" is qualified by quote marks and the phrase "so-called", so I'm happy with that. Also happy that this decision is being seen as a precedent and used as a basis for advising clients.

Freshfields don't come cheap. I used to work next-door to their Fleet Street offices and walk through their ridiculously opulent courtyard on my way to get my lunch-time sandwiches 25 years ago.
 

user9876

Senior Member
Messages
4,556
I'm not sure that was so bad. People have said that they'd be interested to hear the views of participants... that could count? While QMUL might try to spin that as angry activists frantically working to track down participants, the freshfields article didn't say that.

Yes I did pick out what I thought was bad. The rest seemed good to me. But I wonder what the stories going through the legal profession are.


It's not really a problem for us, in a legal summary. It's not being read by people who are looking to form an opinion about ME/CFS or treat patients, just people interested in the legal implications.

And in that legal context, the article (perhaps incorrectly, and definitely without support) suggests that even militant harassers who want to track down and throw eggs at study participants can't be denied the data. It would be annoying in a mainstream article, but in a legal article regarding open trial data, it simply gives the impression that even actual intent of harassment isn't an excuse to play hide-the-data.

So that article contains an error which works in favor of data sharing :D

Yes on reflection that is probably the point that they are making and I think that is a good point. A campaign should not deny access to data but the fact that people are campaigning should be a signal of public interest. The vexatious point was intended to be one of a campaign using FoI to disrupt rather than find info and in this case the clear goal is to find information and understand the trial better because they have failed to publish results correctly.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Last edited:
Action for M.E. comment

Alan Cook, Chair of Board of Trustees, Action for M.E., says, “As a point of principle, Action for M.E. supports the sharing of research data to enable replication and validation. Like a number of other organisations, I wrote to QMUL in February on behalf of Action for M.E. in support of the release of data related to the PACE trial.

“The Board are pleased to see that QMUL has now shared the data as instructed to do so by the Information Commissioner, and we await published analysis of it with considerable interest.

https://www.actionforme.org.uk/news/pace-trial-data-released-to-me-patient-via-foi-request/

Originally posted this in another thread, now deleted my other posting.