Submissions are now sought for a special journal edition, "ME/CFS - The Severely & Very Severely Affected"

[Tom Kindlon]

Submissions are now sought for a special journal edition, "ME/CFS - The Severely & Very Severely Affected"

Guest Editors:

Dr. Kenneth Friedman
Laboratory Corporation of America Holdings, Burlington, United States

Dr. Lucinda Bateman
Bateman Horne Center, Salt Lake City, United States

Prof. Kenny Leo De Meirleir
Professor emeritus Physiology, Pathophysiology and Medicine, Vrije Universiteit Brussel

Deadline for manuscript submissions:
31 December 2020

Message from the Guest Editors

“ME/CFS—The Severely and Very Severely Affected” is a proposed themed Special Issue of Healthcare concerning housebound and bedbound Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients. Our intent is to redefine ME/CFS as the serious disease that it is. Up to this point in time, all literature and case definitions of ME/CFS have excluded severely and very severely affected patients, and diagnosis, patient management, and case definitions have been based on the ambulatory ME/CFS patient. Although never formally studied, it is estimated that twenty-five percent of ME/CFS patients are either severely or very severely affected. What other disease’s diagnosis, patient care, and case definition exclude the most severely ill twenty-five percent?

We aim to document, describe, and promulgate what can and should be done for this hidden patient population. By focusing on the severely affected, it is our hope that the pathophysiological nature of the disease will be better accepted and understood, and effective methods of symptom reduction and patient improvement will be placed in the medical literature.

More details including the email addresses for the guest editors are in this file which I have uploaded in 2 places:
<https://www.dropbox.com/s/6lnhn6xo8d8eh2w/me_cfs_issue_Flyer.pdf?dl=0>
<https://www.mediafire.com/file/klrm1p0ilnuubrw/me_cfs_issue_Flyer.pdf/file>
I have also uploaded with this post.

I have posted some details on Twitter and Facebook. Here are links to facilitate sharing:

 

[Tom Kindlon]

Tom: I've uploaded the attached file here:
<https://www.dropbox.com/s/tng01btbj...ely and Very Severely Affected—Flyer.pdf?dl=0>
and here:
<https://www.mediafire.com/file/gbqb...nd_Very_Severely_Affected%u2014Flyer.pdf/file>
-------

---------- Forwarded message --------- From: Ken Friedman Date: Sun, Apr 5, 2020 at 9:25 PM

I am very pleased to inform you that the first paper for the above entitled, themed, medical journal issue, hosted by the journal Healthcare, has been accepted for publication.

We invite all authors to submit papers relevant to this topic. We invite others who know potential authors to inform them of the opportunity and encourage them to submit papers. All submitted manuscripts are subject to peer review.

For further information please refer to the journal issue's website:

https://www.mdpi.com/journal/healthcare/special_issues/me_cfs_issue

Some information about this project is attached.

The importance of this issue is underscored by PubMed literature search last night for articles published concerning the severely or very severely affected ME/CFS patient. Not one article appeared using that search strategy. With an estimated 20 percent of ME/CFS patients being severely or very severely affected at some time during the course of their illness, it is time to fill that void in the medical literature. That is our intent!

Subsequent to journal publication, it is our intent to republish the journal issue as an on-demand print monograph - permissible under our open copyright agreement.

Consider contributing to this historic work.

Many thanks, Ken and co-guest editors Lucinda Bateman, M.D., and Kenny DeMeirleir, M.D.

--
Kenneth J. Friedman, Ph.D.
Board Member, NJME/CFSA Board Member,
ImmuneDysfunction.org
Associate Professor of Pharmacology and Physiology, New Jersey Medical School (retired)

 

[Tom Kindlon]

Ken Friedman
7:51 PM (19 minutes ago)

The first manuscript in this themed issue of the journal Healthcare has been published and may be found at:

https://www.mdpi.com/2227-9032/8/2/88

If you know of potential authors, please let me know. The issue closes at the end of 2020.

Thank-you,
Ken

--
Kenneth J. Friedman, Ph.D.
Board Member, NJME/CFSA
Board Member, ImmuneDysfunction.org
Associate Professor of Pharmacology and Physiology, New Jersey Medical School (retired)

I haven't read this paper so far but I hope some of the other submissions have more of a specific focus on the severely affected:

The Development of a Consistent Europe-Wide Approach to Investigating the Economic Impact of (ME/CFS): A Report from Euromene Apr 2020
https://www.s4me.info/threads/the-d...me-cfs-a-report-from-euromene-apr-2020.14535/

 

[Arnie Pye]

Merged thread

Link : https://www.mdpi.com/journal/healthcare/special_issues/me_cfs_issue

Keywords

• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
• ME/CFS
• Chronic Fatigue Syndrome (CFS)
• Myalgic Encephalomyelitis (ME)
• severely affected (housebound) patients
• very severely affected (bedbound) patients

For anyone interested the link above has an option to "Download all papers".