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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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New PACE paper, more SMC spin.

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Dolphin

Senior Member
Messages
17,567
Bob said:
I've only just discovered the Lancet's commentary, by Knoop & Wiborg, so I'm posting the link in case anyone else missed it (i don't know if it's posted in this thread and I missed it):
http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(14)00145-X/abstract
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I posted it here: http://forums.phoenixrising.me/inde...-paper-more-smc-spin.34924/page-2#post-545564

There's a thread for discussing it here: http://forums.phoenixrising.me/inde...mmentary-on-pace-trial-mediators-paper.34928/
 
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Dolphin

Senior Member
Messages
17,567
Bob said:
I haven't read the media articles yet. I don't think I can face them.

It's depressing that they've managed to get so much cr*p published in so many newspapers again.
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Here are two things you may miss:
Calder worked on a 2011 study called the PACE trial. It found that CBT, where a health professional helps patients understand and change the way they respond to symptoms, and GET, a personalised, gradually increasing exercise programme, helped around 60 percent of CFS patients improve.

from: http://www.reuters.com/article/2015/01/14/health-fatigue-treatment-idUSL6N0US1U320150114
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[Doesn't mention that 45% in the Specialist Medical Care-only group improved (the definition of improvement wasn't demanding. The third primary outcome measure in the protocol measured improvement but it's never been reported on)]

The study found the two treatments enabled at least one in three people to recover from the disorder, which leaves many bed-bound or in a wheelchair.

http://www.dailymail.co.uk/health/a...e-anxious-activities-aggravate-condition.html
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Even the authors only paper gave a recovery rate of 22% and their recovery definition was rubbish.
 
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daisybell

Senior Member
Messages
1,613
Location
New Zealand
And then there's this...
http://www.telegraph.co.uk/health/h...igue-syndrome-the-symptoms.html#disqus_thread
Ok the article could be worse, but why do they have to put a comment about militant patients scaring off researchers under the picture?
@charles shepherd please can't the MEA do something? This is all so wrong, and I can't believe that we are stuck in the same old wheel of hell. If just one reporter could actually read the research and assess the facts.
I feel really upset about this, particularly coming on the back of the good article on Medscape. No hope of me returning to the UK, despite the fact I would like to... I wouldn't risk it.
 
biophile

biophile

Places I'd rather be.
Messages
8,977
Keep-Calm-and-Carry-On-Navy-Blue-Poster-Front.jpg
 
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Valentijn

Senior Member
Messages
15,786
Bob said:
It's depressing that they've managed to get so much cr*p published in so many newspapers again.
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More opportunities for us to make concise comments explaining why patients who are willing to say they feel better after being brain-washed to do so will also be more likely to agree that they now fear exercise less. And a good time to point out that little problem with the lack of any objective improvement in any group of ME/CFS patients in any CBT/GET trial, ever :rolleyes:

But yeah, I'm glad I haven't had breakfast yet :vomit:
 
Marco

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
In all honesty I wouldn't be too concerned as the press and their readerships have much bigger fish to fry over the next few days.

Why draw attention to something that's likely to be largely ignored anyway.
 
chipmunk1

chipmunk1

Senior Member
Messages
765
The findings about fear avoidance did not imply a psychological cause, said Chalder. “We know that beliefs are incredibly powerful, as are behaviours, and they are an incredibly powerful aspect of the nature of the illness. It doesn’t matter whether you’ve got cancer, MS [multiple sclerosis ], depression or CFS, your beliefs are going to be incredibly important.”
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no they are not. if you have cancer you are going to die even if you dont believe it.

this is what happens when social scientists are trying to teach us how nature works.
 
Cheshire

Cheshire

Senior Member
Messages
1,129
From The Guardian Article:

Patients’ fear that exercise or activity will make chronic fatigue syndrome worse can significantly hinder treatment of the debilitating condition, according to researchers.


She said fear was understandable given the nature of the condition but that people with ME often did too much on days when they felt the symptoms less, hence the importance of experts guiding them through a gradual increase in activity.


http://www.theguardian.com/society/...ients-fear-exercise-hinder-treatment-study-me
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That defies logic!!!! An exercice phobia is at the core of the pathology, BUT the people suffering from it are doing too much at the same time???
 
chipmunk1

chipmunk1

Senior Member
Messages
765
Cheshire said:
From The Guardian Article:

That defies logic!!!! An exercice phobia is at the core of the pathology, BUT the people suffering from it are doing too much at the same time???
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well spotted.

the fearless phobics. makes a lot of sense.

She said fear was understandable given the nature of the condition but that people with ME often did too much on days when they felt the symptoms less, hence the importance of experts guiding them through a gradual increase in activity.
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yes the viral infection made them unlearn basic behaviour. Everyone knows that nature cannot and does not self-regulate. Never has. Humans are not capable of learning simple basic behaviour on their own. Never were.

We also need some potty training again.

to sum it up:

We have a massive chronic exercise/activity phobia so serious that it leaves us disabled.

From time to time the severe phobia goes away on it's own and we react by exercising so much that we become completely disabled by it.

Now one has to conclude if we get over our phobia on our own , it doesn't need to be treated.

We just need help with our tendency to do too much. The answer: Don't exercise. No matter what happens don't! It will disable you. Isn't that what patients have been saying for a long time?

BTW: Has anyone ever heard of someone with a spider phobia who occasionally keeps a black widow as a pet spider?

Someone with a fear of flying taking flying lessons once a year?

Social anxiety with part-time extroversion?

If this the typical presentation of a phobia sufferer?
 
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chipmunk1

chipmunk1

Senior Member
Messages
765
And then there's this...
http://www.telegraph.co.uk/health/h...igue-syndrome-the-symptoms.html#disqus_thread
Ok the article could be worse, but why do they have to put a comment about militant patients scaring off researchers under the picture?
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probably to discourage sufferers from commenting on the article or make them less credible if they do comment.

it seems they don't want people to speak out and tell the truth. I wonder why?

the spin and brain washing seems to have worked.. from the comments:

Was it called 'Yuppie flu' because it is a recent illness, never happened when people had to work to eat and one just got on with it and worked past illness
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This topic has been researched to death ! It is a Psychiatric problem which of course the "sufferers " reject "
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Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
As a disinterested observer I perceive above the rantings of a totally sane, rational, highly intelligent, emotionally balanced, scientifically critical and penetratingly insightful group of human beings. Presumably none of them have CFS? (Maybe just ME.)

I think there are one or two better journalists out there. Hopefully that will become apparent in the not too distant future.

On another positive note, my impression is that the CBT enthusiasts are actually digging themselves deeper and deeper into their irrational hole. The ironies are beginning to sprout like daisies - as someone pointed out.
 
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