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Crawley: Natural course of CFS/ME in adolescents

JadeD

Senior Member
Messages
165
Location
UK
Please correct me if I'm wrong, but how can she get away with entitling the study 'the Natural Course of CFS/ME in Adolescents, but later confirms that the term 'chronic disabling fatigue' is better suited as 'CFS/ME' was not verified by clinical diagnosis.

It's either about CFS/ME patients or it's not. You can't have a mixed bag and then claim 75% of adolescents recover after 2-3 years. I'm not disputing that the rate of recovery for adolescents is far better than for adults, but yet again another poorly designed longitudinal study does not support this yet.

I'm utterly embarrassed to live in the UK when this BPS nonsense is being published.
 
Messages
13,774
I'd have thought it's in her own interests to distance this work from 'CFS' so much as possible.

with approximately 75% recovering after 2–3 years.

A natural recovery rate of appx 75% makes it harder to justify specialist services which are able to claim a recovery rate of appx 80%, and her 'research' largely seems focussed on trying to justify funding for her services.
 

Starlight

Senior Member
Messages
152
I can't understand how she gets away with this insanity,total deception in plain sight. It is scary.it seems that anything goes as a scientific study today. I can't believe that the science community can accept this bs.is it that nobody bothers to read this stuff but ourselves.I feel so angry,.....again.
 
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Londinium

Senior Member
Messages
178
Natural Course of Lung Cancer following Cough Medicine

Design
Longitudinal follow-up of patients following administration of cough medicine.

Participants
We identified patients who had an unexplained cough. We used the term 'unexplained cough' because we didn't check whether the patients had lung cancer.

Results
98% of patients who received a dose of cough medicine ceased to have a cough within two months.

Conclusions
Positive clinical outcomes are expected for patients with an unexplained cough (a proxy for lung cancer) if they are provided with cough medicine.


[Expect to see NICE recommending that chemotherapy is withdrawn and replaced by cough medicine within the following six months]
 

Cheesus

Senior Member
Messages
1,292
Location
UK
I'm going to write to the journal to ask for their justification of conflating CFS/ME with "CDF." You simply cannot do a study on an undefined cohort then place them in whatever disease category you like. Those kids could have had anything.

This is really the height of poor science. How anyone could put their name on something like that is beyond me. I'd be extremely embarrassed.
 
Messages
2,125
see also this thread:http://forums.phoenixrising.me/inde...nti-science-brs2017.51066/page-22#post-846814

This was the original report :http://adc.bmj.com/content/early/2017/01/19/archdischild-2016-311198

Why has it been changed (6months later) ? and what exactly has been changed?

eta:
Well wouldn't you know it...........she has created a new diagnosis CDF :

http://adc.bmj.com/content/early/2017/01/19/archdischild-2016-311198

"We identified adolescents who had disabling fatigue of >6 months duration without a known cause at ages 13, 16 and 18 years. We use the term ‘chronic disabling fatigue’ (CDF) because CFS/ME was not verified by clinical diagnosis."

"Conclusions The prevalence of CDF lasting 6 months or longer (a proxy for clinically diagnosed CFS/ME) increases from 13 to 18 years. However, persistent CDF is rare in adolescents, with approximately 75% recovering after 2–3 years."

The term CDF is used throughout the report.
 
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Cheesus

Senior Member
Messages
1,292
Location
UK
I'm going to write to the journal to ask for their justification of conflating CFS/ME with "CDF." You simply cannot do a study on an undefined cohort then place them in whatever disease category you like. Those kids could have had anything.

This is really the height of poor science. How anyone could put their name on something like that is beyond me. I'd be extremely embarrassed.

Sent my email:

I am writing to you in your capacity as the Interim Editor in Chief of the Journal Archives of Disease in Childhood. I recently came across the paper ‘Natural course of chronic fatigue syndrome/myaglic encephaloymyelitis in adolescents’ published in Volume 102, Issue 6 of ADC by Crawley et al (2017).

The title of the paper and the majority of the introduction imply that the study is about adolescents with CFS/ME. However, the final sentence of the introduction undermines that objective: “As children in our study were not examined by a physician, we have used the term ‘chronic disabling fatigue’ (CDF) rather than CFS/ME to indicate chronic fatigue that is disabling.”

Those children could have had a variety of different diseases that cause prolonged fatigue, yet we are led to believe that a study of their collective conditions can somehow add to the body of literature on a specific disease process. CFS/ME is a highly contentious disease with a great deal of conflicting evidence and hypotheses; answers as to its exact nature and cause are as yet to be determined. By publishing a study of patients who are so poorly defined as to be undefined, ADC has further muddied already murky waters. The addition of this study to the body of literature is not only unhelpful, but is actively detrimental to the pursuit of answers for patients with this highly disabling disease.

How is ADC able to justify publishing a study that to all appearances is about CFS/ME, yet fails to assess if any of the study participants actually have CFS/ME?

I look forward to your reply.
 

Cheesus

Senior Member
Messages
1,292
Location
UK
I had a reply from the editor. I was directed to make a response to the paper directly on the website.

I have submitted the same email onto the website in a slightly modified format to suit the context. I used a pseudonym because I do not particularly want my PR username to be associated with my real identity, as I publish a lot of very personal medical information under my PR username. I am sure you can all understand.
 
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HowToEscape?

Senior Member
Messages
626
I had a reply from the editor. I was directed to make a response to the paper directly on the website.

I have submitted the same email onto the website in a slightly modified format to suit the context. I used a pseudonym because I do not particularly want my PR username to be associated with my real identity, as I publish a lot of very personal medical information under my PR username. I am sure you can all understand.
Yep, and there are web crawling bots that automate the process of linking those.