United Kingdom: Science Media Centre (including Fiona Fox)

JemPD said:
:(Yes i must say i do feel pretty f'ckd reading this constant stream of propaganda bilge churned out by these people. Dreading the sunday papers :cry:
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They want us to feel f'cked, part of their ploy, but don't let them win!

They're running scared, this fact sheet was a different tone from usual I think, full of mis-information and lies but the focus was more on covering their asses I think.

Let's focus on the paper when it comes out not on this fake news.
 
Webdog said:
Just wanted to say that rejection of PACE is not a guarantee of complete rejection of GET/CBT for ME/CFS.

Healthwise, which provides medical content for millions of Americans, has rejected PACE. However, Healthwise still points to Cochrane, unnamed clinical experts, and the assertion that GET/CBT remains beneficial for some patients to continue recommending GET/CBT. To be fair, Healthwise has deemphasized GET/CBT. But not abandoned the treatments.

Googling has shown me Healthwise has a number of psychosomatic medicine specialists on staff as content reviewers. Which could account for their reluctance to completely drop GET/CBT, even after abandoning PACE as unreliable.

I don't want to take this thread off track, but even if the Science Media Centre does abandon PACE, it doesn't necessarily mean they will completely abandon GET/CBT. Healthwise has shown there is a fallback position.
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I completely agree. PACE may be the GET/CBT’s jewel in the crown, but there is still a large body of similarly (though perhaps not as egregiously) flawed work left standing once PACE has gone. That’s why I wrote this PEM/GET primer, focussing on the flaws in the GET research as a whole, not just GET.
https://emerge.org.au/wp-content/uploads/2018/02/PEM-GET-Primer-December-2017.pdf
 
Simone said:
I completely agree. PACE may be the GET/CBT’s jewel in the crown, but there is still a large body of similarly (though perhaps not as egregiously) flawed work left standing once PACE has gone. That’s why I wrote this PEM/GET primer, focussing on the flaws in the GET research as a whole, not just GET.
https://emerge.org.au/wp-content/uploads/2018/02/PEM-GET-Primer-December-2017.pdf
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Thank you. Helping to plan #MillionsMission in London with #STOP GET as main message. Can we use Executive Summary & cite reference to primer in a leaflet? Thanks.
 
SMC's Expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments

They've had trouble finding people supporting Sharpe and co.
Jon Stone's comment is not really over enthusiastic.
We need better treatments for CFS/ME, be they biological treatments directed at the associated pathophysiology of the condition, or more effective forms of rehabilitation. Until we have these, the question is whether it is better to offer a modestly effective treatment supported by data from many other trials, with a realistic discussion of its pros and cons, than none at all.
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But still standing by his colleagues (and protecting his own business)
“The PACE Trial has been subject to an extraordinary degree of hostility. On the basis of this reanalysis, this was not warranted – the basic difference in outcomes are still present. Additionally, it is worth reflecting that positive trials of CBT for fatigue in conditions such as Multiple Sclerosis with similar treatment effects do not mean that MS is a psychological condition. The same is true for CBT/GET and CFS/ME.”
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Ponting's one is a clear step back, and supportive of the reanalysis findings. A very different speech from Holgate's.

The authors also make the case that the lack of substantial and enduring effects of CBT and/or GET seen from a trial of the size of PACE implies that these therapies are unlikely to be commonly effective.
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And as usual, the "authors' response", more disconnected and unsubstanciated than ever.

http://www.sciencemediacentre.org/e...-for-chronic-fatigue-syndrome-cfs-treatments/

 
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Cheshire said:
Additionally, it is worth reflecting that positive trials of CBT for fatigue in conditions such as Multiple Sclerosis with similar treatment effects do not mean that MS is a psychological condition. The same is true for CBT/GET and CFS/ME.
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My response (if i had the ability) would be however in ME/CFS GET worsens patients physical condition and trying to brainwash them into believing they are not ill is not legitimate medicine nor considered ethical behaviour by most medical systems.
Telling MS patients to believe they don't have MS would likely lead to an ethics board meeting in many countries much as it would if you told a cancer patient to pretend they don't have cancer and should by extension shun chemotherapy because they are not actually ill.
 
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So we now have three SMC releases in 2 days.

''CFS/ME factsheet for journalists: The illness and the controversy''. here

''Reanalysis of the PACE trial'' here

''Expert reaction to reanalysis of the PACE trial for chronic fatigue syndrome (CFS) treatments'' here
 
Cheshire said:
And still the same good old bullshit about CBT and GET
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Alvin said:
My response (if i had the ability) would be however in ME/CFS GET worsens patients physical condition and trying to brainwash them into believing they are not ill is not legitimate medicine nor considered ethical behaviour by most medical systems.
Telling MS patients to believe they don't have MS would likely lead to an ethics board meeting in many countries much as it would if you told a cancer patient to pretend they don't have cancer and should by extension shun chemotherapy because they are not actually ill.
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As awful as the fact sheet is, I detect a change in the way they’ve framed CBT and GET. Perhaps not quite so willing to blantantly display how they’ve been used in ME/CFS, and sounding much more reasonable in order to claim their critics are the unreasonable ones. The CBT and GET described in the fact sheet are not as they were described in PACE. It’s a considered ploy to note how these are used in other illnesses without saying how differently they are applying them in ME/CFS.
  • CBT is a talking therapy that helps patients to work out how best to understand and manage their illness, with the aim of enabling them to do more of the things they want to do. Typically patients start by becoming more consistent in the way they approach activity and then build up activities slowly over time. CBT can also help patients to improve their sleeping pattern. Some evidence suggests that CBT can have subsequent physiological effects such as reducing levels of the stress hormone cortisol. CBT is used in a variety of other conditions such as anxiety disorders, insomnia, chronic pain, inflammatory disorders and neurological conditions
  • GET is a structured exercise programme that helps the patient to establish a comfortable and stable level of physical activity before trying out gradually increasing activity in a consistent and carefully monitored way. GET also aims to help patients to gradually do more of the activities that they value. It can also be used to aid recovery from other illnesses such as heart disease and cancer
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sea said:
As awful as the fact sheet is, I detect a change in the way they’ve framed CBT and GET. Perhaps not quite so willing to blantantly display how they’ve been used in ME/CFS, and sounding much more reasonable in order to claim their critics are the unreasonable ones. The CBT and GET described in the fact sheet are not as they were described in PACE. It’s a considered ploy to note how these are used in other illnesses without saying how differently they are applying them in ME/CFS.
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They can reframe in public all they want, as far as we know they are still using the same lies and snake oil in treatments. They still abduct children from their families for forced "treatment", they still lock up adults against their will, they still fight to deny benefits to patients who are disabled. Until this changes its only lipstick on a pig. That what we need to remind the public.
 
Alvin said:
They can reframe in public all they want, as far as we know they are still using the same lies and snake oil in treatments. They still abduct children from their families for forced "treatment", they still lock up adults against their will, they still fight to deny benefits to patients who are disabled. Until this changes its only lipstick on a pig. That what we need to remind the public.
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Absolutely agree. I don’t believe they’ve changed their position at all, they’re just trying to make it sound more reasonable, and we need to make sure the public know exactly what we’re dealing with.
 
sea said:
As awful as the fact sheet is, I detect a change in the way they’ve framed CBT and GET. Perhaps not quite so willing to blantantly display how they’ve been used in ME/CFS, and sounding much more reasonable in order to claim their critics are the unreasonable ones. The CBT and GET described in the fact sheet are not as they were described in PACE. It’s a considered ploy to note how these are used in other illnesses without saying how differently they are applying them in ME/CFS.
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Well, that is a lie, because the type of CBT tested in the PACE trial has nothing to do with the CBT that helps people coping when suffering from other illnesses.

From their protocol:
CBT will be based on the illness model of fear avoidance, used in the three positive trials of CBT [18, 25, 26]. There are three essential elements: (a) Assessment of illness beliefs and coping strategies, (b) structuring of daily rest, sleep and activity, to establish a stable baseline of general activities, with a graduated return to normal activity, (c) collaborative challenging of unhelpful beliefs about symptoms and activity. Both therapists and participants will receive separate manuals.
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We must fight against this normalisation of their CBT, try to prevent them from sweeping the false illness belief (which seems now very embarrassing) under the carpet, because that was their number one aim, and the major element of the therapy.
 
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