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New PACE paper, more SMC spin.

jimells

Senior Member
Messages
2,009
Location
northern Maine
“We have generally taken the view that the main responsibility for investigating and exposing any significant conflicts of interest should lie with the journalists ...”

"... whom we know are mostly just stenographers hanging onto our every word..."

Move along, folks, nothing to see here except propaganda...
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Nature said:
That is a message that Fox has honed well since establishing the SMC in London in 2002.

It's probably just a coincidence, but 2002 is the same year that responsibility for this illness was moved from an NIH institute (I forget which one) to the Office of Research on Women's Health. It's also the same year the CFS Centers of Excellence (or whatever they called them) were shut down.

2002. It was a very bad year, apparently.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine

Dolphin

Senior Member
Messages
17,567
A response from:

Nasim Marie Jafry
Writer of novel The State of Me (2008), had ME for 31 years
Edinburgh

has gone up:
http://www.bmj.com/content/350/bmj.h227/rr-3

She said
ME is a complex neuroimmune illness, yet important and current biomedical research (at home and abroad) is consistently by Professor Chalder and her colleagues.
should read
ME is a complex neuroimmune illness, yet important and current biomedical research (at home and abroad) is consistently *ignored* by Professor Chalder and her colleagues.

She believes it was edited (it was slow to go up).
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Response to Lancet article from Prof. Betsy Keller, Ph.D., Ithaca College
Jan 24, 2015
https://theothersideofthestretcher....e-from-prof-betsy-keller-ph-d-ithaca-college/

Some Extracts:
For ME patients, activity overreaching equals symptom exacerbation, including decreased functional capacity. It’s a predictable action and reaction that is borne out by numerous and replicated physiological studies.

Given what we have learned in the past eight years about this illness, it is intellectually embarrassing to suggest that ME is a psychological illness. [...]
[...] with regard to GET, there are very, very few individuals in the world who truly understand the hairline trigger created by the aerobic metabolism pathology in these patients.
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
Here's an opportunity for somebody:

https://www.facebook.com/permalink.php?story_fbid=824260817631578&id=171411469583186

ME Association on Facebook said:
One of the TV new channels wants to catch up with this theme. It's something they've been wanting to do since the Prof Trudie Chalder press conference at the Science Media Centre earlier this month, which their reporter attended

I want the news film to catch the opposite vibe - that it is NOT fear or exercise and exercise avoidance that makes M.E. worse, that it is instead something far more deep-rooted in the way that the bodies of people with ME cannot cope with doing too much exercise – that over-exertion, physical or mental, can make them very ill indeed.

My strategy may not work, of course. It suddenly complicates the story for the reporter concerned. I left him all of a wobble...

So my question is this.

Is there anyone out there – preferably living in or close to London, Manchester or Birmingham – with a bit of a horror story to tell about their ME and what happened to them after exercise ,who would be prepared to do an interview on camera?

If so, please email me asap with your contact details and let me know whereabouts you live. If you can briefly let me know what happened to you when you did too much exercise, so much the better. I'm at tony@meassociation.org.uk

Thanks, Tony
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Well, reading the responses to that should be fun!

I wonder why they bothered responding, esp with such a bog-standard letter. It would be nice to think that the BMJ invited them to respond because they are planning to publish some of the posts, but I'd be surprised if that was the case.
 

chipmunk1

Senior Member
Messages
765
T.C:

We would like to clarify that we did not say that fear avoidance was the cause of CFS [3,4]. We did not state that the illness was psychological or an exercise phobia. Nor did we say that fear of exercise in CFS was “irrational”. Rather, in an illness where exercise increases symptoms, we believe that being cautious about engaging in activity is understandable [4]. The same processes are important in other chronic illnesses such as low back pain where fear avoidance beliefs have been shown to both moderate and mediate the effects of treatment [5

what i said before.. they just use the concept of deconditioning and fear avoidance of low back pain(completely unrelated illness if you ignore that some believe both are due to somatisation) and apply it to ME

400px-Fear-avoidance_model.jpg


http://en.wikipedia.org/wiki/Fear-avoidance_model

Introduced by Lethem et al. in 1983, this model helped explain how these individuals experience pain despite the absence of pathology.[2][3][4] If an individual experiences acute pain and manages the situation by using avoidant behavior, a lack of pain increase wouldreinforce this behavior.[5] However, this avoidant behavior may cause the individual to decrease exercise which may in turn lead to increased disability

This is of course not a real scientific model it is a formal and polite way to accuse someone of causing their symptoms because of their flawed personality.
 
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Dolphin

Senior Member
Messages
17,567
Well, reading the responses to that should be fun!

I wonder why they bothered responding, esp with such a bog-standard letter. It would be nice to think that the BMJ invited them to respond because they are planning to publish some of the posts, but I'd be surprised if that was the case.
It will be very annoying if the BMJ publish their letter but none of the other letters.
Theirs is 310 words and 5 references so would just fit into the limits the BMJ generally apply for published letters.
 
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eafw

Senior Member
Messages
936
Location
UK
It will be very annoying if the BMJ publish their letter but none of the other letters.

I was wondering if there is anywhere else we can get the best responses published ? Do the letter writers still have rights over their content such that it can be reproduced in a newspaper article for instance ?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I was wondering if there is anywhere else we can get the best responses published ? Do the letter writers still have rights over their content such that it can be reproduced in a newspaper article for instance ?

I would think so.