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"Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

slysaint

slysaint

Senior Member
Messages
2,125
Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Daisymay said:
Did she get legitimate REC approval for SMILE do you know? Sorry I'm loosing track of it all.
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The study application received ethics approval from South West 2 Local Research Ethics Committee.


For the original pilot study, the application had been reviewed on 8 July 2010 also by a South West Research Ethics Committee (REC) and ultimately received a favourable opinion on 8 September 2010.

Mrs Joan Kirkbride, Head of Operations, National Research Ethics Service:

"Subsequently the National Research Ethics Service (NRES) received a number of emails and letters about this study and, despite being satisfied with the ethical review, felt it fair to give consideration to the issues raised.

"It was clear that the application had received a considered and extensive review of the ethical issues of the project prior to the issue of the favourable opinion. This met all required procedures and processes, however, in view of the weight of correspondence received, much of which raised very similar issues, NRES asked the REC to consider the application, taking into account the issues that had been raised in the subsequent correspondence. Dr Hugh Davies, NRES Ethics Advisor provided a summary to the REC on the issues which had been raised and the opportunity was offered to Dr Crawley and the research sponsor to respond to the issues raised..."

Full comment from Mrs Joan Kirkbride, Head of Operations, National Research Ethics Service

and

Extract of Minutes from South West 2 REC meeting held on December 2, 2010 (which includes Committee's responses to points discussed)

are archived here on my old ME agenda site:

https://meagenda.wordpress.com/2011...lation-to-smile-lighting-process-pilot-study/

Letter issued by NRES following scrutiny of complaints in relation to SMILE Lighting Process pilot study

January 6, 2011

-------------

By the way, the original pilot study had initially proposed that the age range would be 8 to 18. By September 2010, this had been raised to age 12 to 18.

( https://meagenda.wordpress.com/2010/09/16/smile-–-specialist-medical-intervention-and-lightning-evaluation-documents/ )
 
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Art Vandelay

Art Vandelay

Senior Member
Messages
470
Location
Australia
Ysabelle-S said:
The abusive patient narrative is meant to silence us, deny us a right to be heard, and prevent proper researchers from entering the field and throwing out the quacks. We know that. And they know we know. They play victim to cover up the scale of their bad research, poor science and their mistreatment of vulnerable patients.
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I think it this case the abusive patient lie is also meant to be a pre-emptive strike against the ridicule and criticism Creepy Crawley knew she'd receive on the release of her 'study'.

It's an old strategy used to discredit any criticism before it occurs.
 
lilpink

lilpink

Senior Member
Messages
988
Location
UK
Daisymay said:
Did she get legitimate REC approval for SMILE do you know? Sorry I'm loosing track of it all.
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Ahh that's not my area of particular knowledge. There should be others on here who can help with that. I know many people complained (to the GMC too I'm fairly sure) that the trial was unethical. But that's not *quite* the same thing I grant you.

EDIT: I see this has been answered above. :)
 
TiredSam

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Art Vandelay said:
I think it this case the abusive patient lie is also meant to be a pre-emptive strike against the ridicule and criticism Creepy Crawley knew she'd receive on the release of her 'study'.

It's an old strategy used to discredit any criticism before it occurs.
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Well she'll be quite surprised when a load of polite scientists, researchers, academics and journalists turn up then.
 
A

arewenearlythereyet

Senior Member
Messages
1,478
I'm glad I had an early night!

Everyone has pretty much said what I have been thinking...thanks.

One thing I did wonder is how on earth would you scale this rubbish up, or put in a control if you were to even to attempt to do it properly? This seems to be highly prone to variation.

What is the significance of the word "STOP" vs any other synonym...e.g. "DESIST"
or simply "F*** AWWWWFFF"?


If she is just getting a load of lazy teenagers and people with anxiety or depression, surely she can't say that it even meets the current nice guidelines for diagnosis for ME?. I thought those were conditions that had to be eliminated before diagnosis. Is this why she is saying that children have a different sort? I.e. So she can continue recruiting participants outside of the diagnostic criteria.mperhaps she should explain her interpretation of what the criteria should be for children and submit these to NICE for their review?

I'm thinking that perhaps a control could be comparing the process to people who don't have ME but do have depression and see what the difference is there?

Edited to change synonym...the use of antonyms would be unethical!
 
Y

Ysabelle-S

Highly Vexatious
Messages
524
Frankly, until we have reliable biomarkers, no one can make any claims about recovery from ME due to this or that therapy or drug, because they can't even prove they had the illness in the first place.

I've had two plates of homemade broccoli and cheese soup, and I'm hankering after another one. Need to find something else to eat or my soup will all be gone.
 
C

Chrisb

Senior Member
Messages
1,051
arewenearlythereyet said:
I'm thinking that perhaps a control could be comparing the process to people who don't have ME but do have depression and see what the difference is there?
Click to expand...

I wonder how the results would compare with recovery in a group with caring families providing old fashioned convalescent care, and left to their own devices, without intrusive interventions from schools or social services.
 
lilpink

lilpink

Senior Member
Messages
988
Location
UK
Again apols if this has been posted already.

I notice EC can be heard on record as saying that in children CFS (sic) '.. is more genetically heritable'. I am not aware of any science that underscores this assertion. I think she needs to prove that this is so.

http://www.bbc.co.uk/programmes/p05gsrnk

Chronic fatigue: A new approach?


EDIT: is someone able to cache this please?
 
W

Wonko

Senior Member
Messages
1,467
Location
The other side.
Again, surely if 1% of the child population has "M.E." and it's heritable that would imply that around 0.5% of the adult population has it - as far as I am aware this is not the case. It's not only not in the same baggage car it's not on the same train.

these children, at least in the majority of cases, cannot have M.E.

edit - the above statements may not be scientifically valid, I am aware of this, however the point I am trying to make probably is valid.
 
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A

arewenearlythereyet

Senior Member
Messages
1,478
Wonko said:
Again, surely if 1% of the child population has "M.E." and it's heritable that would imply that around 0.5% of the adult population has it - as far as I am aware this is not the case. It's not only not in the same baggage car it's not on the same train.

these children, at least in the majority of cases, cannot have M.E.
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I also noticed listening to the radio programme and reading the papers, we seem to now be quoting 190k people with ME (thought it was 250k?), in the same article as saying 1% of all children. Shame it's not Jeremy Paxman doing the interviewing...he would have spotted that one.
 
Kalliope

Kalliope

Senior Member
Messages
367
Location
Norway
A Norwegian newspaper for health care and medicine has no less than three articles on the trial today. I think this is the first time ever they cover a study on ME so extensively.

Studie antyder at kontroversiell ME-metode kan fungere på ungdom
google translation Trial suggest controversial ME-method may work on young adults

- Ikke overraskende
google translation Interview with prof. Wyller - Not surprising
"This is very interesting, important and not surprising, says Vegard Brun Wyller"

- Dette er veldig spennende resultater
google translation - These are very exciting results (Interview with senior doctor at national resource centre for CFS/ME)
"It's very important to get research on other forms of treatment, such as cognitive approaches,"
 
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