Special edition of the journal Work with at least 12 articles on ME/CFS

T

Tom Kindlon

Senior Member (Voting Rights)
Some or all of these are worthy of their own threads, but I'm not going to set up those threads at this time.

From: Dr. Marc-Alexander Fluks
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Source: Work
Preprint
Date: June 16, 2020
Guest Editor: Amy Mooney

___ Jacobs K.
From the Editor.
Work. 2020 June 16.
https://content.iospress.com/articles/work/wor203167

___ Mateo LJ, Chu L, Stevens S, Stevens J, Snell C,
Davenport T, VanNess JM.
Post-exertional symptoms distinguish myalgic
encephalomyelitis/chronic fatigue syndrome subjects
from healthy controls.
Work. 2020 June 16.
https://content.iospress.com/articles/work/wor203168

___ Lee J, Wall P, Kimler C, Bateman L, Vernon SD.
Clinically accessible tools for documenting the
impact of orthostatic intolerance on symptoms and
function in ME/CFS.
Work. 2020 June 16.
https://content.iospress.com/articles/work/wor203169

___ Davenport TE, Stevens SR, Stevens MA, Snell CR,
Van Ness JM.
Properties of measurements obtained during
cardiopulmonary exercise testing in individuals
with myalgic encephalomyelitis/chronic fatigue
syndrome.
Work. 2020 June 16.
https://content.iospress.com/articles/work/wor203170

___ Ausubel B
What ME/CFS caregivers want you to know.
Work. 2020 June 16.
https://content.iospress.com/articles/work/wor203171

___ Mirin AA.
NIH can no longer turn its back on chronic fatigue
syndrome.
Work. 2020 June 16.
https://content.iospress.com/articles/work/wor203172

___ Mirin AA, Dimmock ME, Jason LA.
Research update: The relation between ME/CFS disease
burden and research funding in the USA.
Work. 2020 June 16.
https://content.iospress.com/articles/work/wor203173

___ Vink M, Vink-Niese F.
Graded exercise therapy doesn’t restore the ability to
work in ME/CFS. Rethinking of a Cochrane review.
Work. 2020 June 16.
https://content.iospress.com/articles/work/wor203174

___ Lopez-Majano D.
Impact of myalgic encephalomyelitis on treatment of
comorbidities: A lived experience.
Work. 2020 June 16.
https://content.iospress.com/articles/work/wor203175

___ Chu L, Fuentes LR, Marshall OM, Mirin AA.
Environmental accommodations for university students
affected by myalgic encephalomyelitis/chronic fatigue
syndrome (ME/CFS).
Work. 2020 June 16.
https://content.iospress.com/articles/work/wor203176

___ Tokunaga K, Sung AP, Tang JJ, Guglielmo MJ, Smith-
Gagen J, Bateman L, Redelman D, Hudig D.
Inclusion of family members without ME/CFS in research
studies promotes discovery of biomarkers specific for
ME/CFS.
Work. 2020 June 16.
https://content.iospress.com/articles/work/wor203177

___ Podell R, Dimmock ME, Comerford BB.
Documenting disability in myalgic encephalomyelitis/
chronic fatigue syndrome (ME/CFS).
Work. 2020 June 16.
https://content.iospress.com/articles/work/wor203178

___ Mooney A.
Research, recommendations and lived/personal experience
with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
(ME/CFS).
Work. 2020 June 16.
https://content.iospress.com/articles/work/wor203179
 
Trial By Error: A Few Interesting Studies

By David Tuller, DrPH
I’m always highlighting dodgy research from the CBT/GET ideological brigades. These studies are fun to tear apart (metaphorically and sometimes literally), but it’s also nice to be able to recommend some decent research. Below are a few recent papers that I have found to be of interest. All of them were published by the journal Work.
Click to expand...
 
We find the disease burden of ME/CFS is double that of HIV/AIDS and over half that of breast cancer.
Click to expand...
That is simply stunning. I would really like for this to be expanded on because it's one of those facts that need overwhelming evidence for people to believe, most physicians would scoff at the idea, rejecting it as absurd, even with this paper as evidence.

I don't doubt the work, I just know that citing peer-reviewed papers is not enough without eminence-based validation. The ability to cherry-pick and discount contradictory evidence on ME is impressive, as if there is a visceral need for the belief system of conversion disorder to be true.

One would think that medical authorities would be interested in addressing this. I really don't understand how that's not the case. The need for denial is so intense that even a figure of this magnitude would barely register a shrug. Government is obligated to act on evidence and to actually follow through a reliable process in order to validate it. I don't understand why medicine can simply void that and just go with feels.
 
rvallee said:
That is simply stunning. I would really like for this to be expanded on because it's one of those facts that need overwhelming evidence for people to believe, most physicians would scoff at the idea, rejecting it as absurd, even with this paper as evidence.

I don't doubt the work, I just know that citing peer-reviewed papers is not enough without eminence-based validation. The ability to cherry-pick and discount contradictory evidence on ME is impressive, as if there is a visceral need for the belief system of conversion disorder to be true.

One would think that medical authorities would be interested in addressing this. I really don't understand how that's not the case. The need for denial is so intense that even a figure of this magnitude would barely register a shrug. Government is obligated to act on evidence and to actually follow through a reliable process in order to validate it. I don't understand why medicine can simply void that and just go with feels.
Click to expand...

At least we got the abstract for that one, detailing that NIH ME research funding was only 7% of the value comensurate with the disease burden. The preceding paper intriguingly entitled "NIH can no longer turn its back on chronic fatigue syndrome" has no information about why, due to the lack of an abstract. I surely hope the confusion about paywalls can be resolved since the power of information like this is enhanced by availability to form a point of reference for public debate.

I think its a valid question to ask though, why does the profession dismiss ME?

When I look for answers the following perspective occurs to me.

Primarily economic, we know the insurance lobby worked hard on reducing their liabilities by framing ME as mental illness which until the 1996 Mental Health Parity Act and subsequent legislation was a driving force behind the misrepresentation of ME in adversarial legal proceedings because payouts for mental conditions were many times lower than for physical conditions.
https://en.wikipedia.org/wiki/Mental_Health_Parity_Act

Dr Byron Hyde gave us some pointers about how this propaganda snowball began to roll with the academically fraudulent claims of hysteria in disease, by McEvedy, in his Little Red Book, which topic was discussed in Jen Brea's documentary Unrest.
http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf - see p11+

As I see it economic pressures also acted on health care provision decision makers who swallowed the lie which came from opportunists looking to advance their careers either by serving the insurance lobby or by using that illegitimate dynamic to expand the patient population they were funded to serve by government.

This raises a secondary aspect of the primary cause, professionalism, while the path of increase for certain professionals was short termist misdiagnosis this created pressure to suppress contradictions to their narrative which unduly impacted NIH and NICE decision making, still evident in the difficulties over criteria, definitions and best practice guidelines today. The knock on effects of which had powerful import for GP practice which is circumscribed by these agencies and most medical professionals would find themselves obliged to avoid sticking their necks out and thus were absenting themselves from the political battlefield. This was a wholesale capitulation of an entire profession to the undue influence of the capture of regulation by the insurance lobby and has important lessons we must recognise to prevent repetition in the future.
 
Threads have been started for the individual studies.
They have been listed with links to the threads and the articles by one of the news team, copied below:
https://www.s4me.info/threads/news-in-brief-june-2020.15439/#post-270040

Special edition Work
A special edition of the journal Work includes 12 articles on ME/CFS. The special edition was organized by Editor Amy Mooney who is a caregiver of a child with ME/CFS.
Thread here

Jacobs K. From the Editor.
Article here

Mooney A. Research, recommendations and lived/personal experience with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
Article here Thread here

Mateo LJ, Chu L, Stevens S, Stevens J, Snell C, Davenport T, VanNess JM. Post-exertional symptoms distinguish myalgic encephalomyelitis/chronic fatigue syndrome subjects from healthy controls.
Article here Thread here

Lee J, Wall P, Kimler C, Bateman L, Vernon SD. Clinically accessible tools for documenting the impact of orthostatic intolerance on symptoms and function in ME/CFS.
Article here Thread here

Davenport TE, Stevens SR, Stevens MA, Snell CR, Van Ness JM. Properties of measurements obtained during cardiopulmonary exercise testing in individuals with myalgic encephalomyelitis/chronic fatigue syndrome.
Article here Thread here

Ausubel B. What ME/CFS caregivers want you to know.
Article here Thread here

Mirin AA. NIH can no longer turn its back on chronic fatigue syndrome.
Article here

Mirin AA, Dimmock ME, Jason LA. Research update: The relation between ME/CFS disease burden and research funding in the USA.
Article here Thread here

Vink M, Vink-Niese F. Graded exercise therapy doesn’t restore the ability to work in ME/CFS. Rethinking of a Cochrane review.
Article here Thread here

Lopez-Majano D. Impact of myalgic encephalomyelitis on treatment of comorbidities: A lived experience.
Article here Thread here

Chu L, Fuentes LR, Marshall OM, Mirin AA. Environmental accommodations for university students affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Article here Thread here

Tokunaga K, Sung AP, Tang JJ, Guglielmo MJ, Smith- Gagen J, Bateman L, Redelman D, Hudig D. Inclusion of family members without ME/CFS in research studies promotes discovery of biomarkers specific for ME/CFS.
Article here Thread here

Podell R, Dimmock ME, Comerford BB. Documenting disability in myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS).
Article here Thread here
Click to expand...

This one also appears to be from the same batch but not included above:
Cardiopulmonary responses to exercise in an individual with ME/CFS during long-term treatment with intravenous saline, 2020 Davenport et al
 
Moved from the NICE guideline thread

Hope they have taken om board NG206....?

Source: Work
Date: December 2021
URL: https://workjournal.org
https://content.iospress.com/journals/work
Ref: https://content.iospress.com/journals/work/Pre-press/Pre-press

Call for Papers
---------------

We are excited to announce the opportunity to publish in a Special Section of WORK: A Journal of Prevention, Assessment & Rehabilitation

Special issue focus

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID: the disease burden of post-infectious illnesses on an individual, family, community and society.

WORK: A Journal of Prevention, Assessment & Rehabilitation is an interdisciplinary, international journal which publishes high-quality peer-reviewed manuscripts covering the entire scope of the
occupation of work.

Manuscript are encouraged, but not limited, to focus on topics involving ME/CFS and/or Long COVID:
* biological disease process
* effects of disability within a socioeconomic, racial, ethnic, gender, or age-group context
* methods for evaluating and documenting disability and disease burden
* best practice protocols for diagnosis, treatment or care for individuals with post-exertional malaise or comorbid illnesses.
We encourage submissions from authors from around the world with varying experience and perspective.


Submission Format

A variety of presentation styles will be accepted:
* Research and clinical paperBron:
* Literature reviews and surveys
* Case studies and lived-experience narratives

Submissions will be double blind peer-reviewed and must follow the 'Instructions for Preparation of Manuscripts'.
http://workjournal.org/preparation-manuscripts

When submitting, please indicate the 'Special Section on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)' so that your submission will be directed to the guest editor and the reviewer team.

All author fees have been waived. Articles will be published in paper format for journal subscribers. Articles will be available in electronic format with open access (no cost download) at
https://workjournal.org/

Published June 2020: The Special Section on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (WORK 66:2)
https://content.iospress.com/journals/work/66/2,

Deadline for manuscript submission: May 6, 2022

Contact guest editor Amy Mooney MS OTRIL with questions AmyMooneyOT@gmail.com
 
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