Tips welcomed regarding submitting published, peer-reviewed papers to databases (if possible)

[Tom Kindlon]

I had a paper published in a peer-reviewed journal back in December 2011. It took me a lot of effort to research it and write it up, and deal with the peer reviewers' comments. The abstract is below and there's a thread on it: http://forums.phoenixrising.me/index.php?threads/harm-from-get-and-cbt.13633/ .

Unfortunately the journal is/was not PubMed-listed (and has now stopped been published), which means fewer people are aware of it.

It had been suggested to me that I might be able to get it archived on PubMed Central to make it more visible. I searched and saw that Leonard Jason had done that with two papers of his that were published in the same journal.

Tonight I have finally had a chance to look in to this. Unfortunately, it looks like I won't be able to archive it on PubMed Central because I'm not an NIH employee nor was it funded by the NIH (see for example: http://publicaccess.nih.gov/determine_applicability.htm

and

Can I deposit papers not arising from NIH funds to PubMed Central?

The NIH Public Access Policy applies only to papers arising from NIH funds. Outside of these arrangements, PubMed Central will deposit papers only from journals with which it has formal agreements. See “How to Join PMC” for more information.

Certain other funding agencies, such as the Wellcome Trust and Howard Hughes Medical Institute, have similar policies to the NIH Public Access Policy that also designate PubMed Central as the repository for their papers. You should refer to the specific funder’s site for information on how to submit their eligible papers to PubMed Central.​

​

from:​

http://publicaccess.nih.gov/FAQ.htm

Does anyone know whether there are any other databases I could submit it to, to try to ensure it is more widely known about? It has been referenced in a few papers/letters but would like it to be more widely known about. I did send it to hundreds of local and national patient groups around the world. I was thinking I might send it to some of the authors whose papers I referenced.
Thanks.

Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Bulletin of the IACFS/ME. 2011;19(2):59-111.

Tom Kindlon
Information Officer (voluntary position)
Irish ME/CFS Association
PO Box 3075, Dublin 2, Rep. of Ireland
Tel: +353-1-2350965
Email: tkindlon@maths.tcd.ie or info@irishmecfs.org


ABSTRACT

Across different medical fields, authors have placed a greater emphasis on the reporting of efficacy measures than harms in randomised controlled trials (RCTs), particularly of nonpharmacologic interventions. To rectify this situation, the Consolidated Standards of Reporting Trials (CONSORT) group and other researchers have issued guidance to improve the reporting of harms. Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) based on increasing activity levels are often recommended for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). However, exercise-related physiological abnormalities have been documented in recent studies and high rates of adverse reactions to exercise have been recorded in a number of patient surveys. Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health while 20% of respondents (range 7-38%, n=1808, 5 surveys) reported similar results for CBT.

Using the CONSORT guidelines as a starting point, this paper identifies problems with the reporting of harms in previous RCTs and suggests potential strategies for improvement in the future. Issues involving the heterogeneity of subjects and interventions, tracking of adverse events, trial participants’ compliance to therapies, and measurement of harms using patient-oriented and objective outcome measures are discussed. The recently published PACE (Pacing, graded activity, and cognitive behaviour therapy: a randomised evaluation) trial which explicitly aimed to assess “safety”, as well as effectiveness, is also analysed in detail. Healthcare professionals, researchers and patients need high quality data on harms to appropriately assess the risks versus benefits of CBT and GET.

The full paper is available free here: http://www.iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx