The Case of Chronic Fatigue Syndrome-Myalgic Encephalomyelitis in Handbook of Research Methods in Health Psychology, 2020, Jason et al

Dolphin · Oct 19, 2020

Jason LA, Cotler J, Bhatia S, Sunnquist M. The Case of Chronic Fatigue Syndrome-Myalgic Encephalomyelitis. Handbook of Research Methods in Health Psychology. 2020 Nov 30:228.

I can read quite a lot of it here:

https://books.google.ie/books?hl=en...DDbhNvvDLKhwM&redir_esc=y#v=onepage&q&f=false

ME/CFS Skeptic · Oct 20, 2020

The final sentences in the conclusion read:

The ME and CFS community has been vociferous in their advocacy efforts for increasing funding for research, the creation of centers for clinical excellence, and the establishment of a research case definition. It is clear that policy makers are more likely to be receptive t o these issues if patients act collectively and forcefully (Best, 2012) as occurred within the area of HIV/AIDS. Yet the patient community continues to remain divided regarding the most basic issues, such as what to call their illness, and this division complicates the formation of collective efforts of activism that are need to accomplish many of the necessary goals of this patient movement.
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Andy · Oct 20, 2020

The ME and CFS community
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Now surely that is two communities?

Yet the patient community continues to remain divided regarding the most basic issues, such as what to call their illness
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Not helped by researchers dividing us into ME and CFS groups.

Trish · Oct 20, 2020

Yet the patient community continues to remain divided regarding the most basic issues, such as what to call their illness
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Andy said: ↑

Now surely that is two communities?

Not helped by researchers dividing us into ME and CFS groups.
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And creating multitudes of names, definitions and diagnostic criteria. Patients didn't create the ridiculous Oxford definition, or decide the Fukuda criteria would make PEM optional. Patients didn't invent the multiple names of the illness.

If doctors create multiple different criteria and names, of course patients will be divided over which one describes their condition.

I think that sounds too much like patient blaming. It's none of our making that we are stuck in this ridiculous situation.

Mithriel · Oct 20, 2020

When a group of self proclaimed experts come along and change the definition and name of a disease at the same time so that people already diagnosed no longer fit the criteria you are bound to have more than one group.

When SW and mates set up CFS in the UK, they were selecting for a new illness which bore little relationship with the original ME. To say they were the same thing was such a terrible thing to do that no one can believe it happened so it is no wonder the result was a mess.

It was like saying that migraine was now a pain in the knee.

Dolphin · Oct 20, 2020

From: Dr. Marc-Alexander Fluks

Source: Handbook of Research Methods in Health Psychology
Chapter 17: Chronic Illness, pp 228-241
Date: November 29, 2020 and january 2021
URL: https://books.google.com/books?id=fPQCEAAAQBAJ&pg=PA228
Ref:
https://www.routledge.com/Handbook-...-Psychology/Ragin-Keenan/p/book/9780429488320

The case of Chronic Fatigue Syndrome-Myalgic Encephalomyelitis
--------------------------------------------------------------
Leonard A. Jason, Joseph Cotler, Shaun Bhatia, Madison Sunnquist

Overview

Chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) affect
approximately 1 million Americans (Jason, Richman, Rademaker, Jordan,
Plioplys, Taylor, et al., 199%); while some individuals believe that CFS
and ME refer to the same illness, others characterize ME as a more
severe, neurological disorder that is discrete from CES (Twisk, 2013).
This controversy will be reviewed in detail. The widespread,
debilitating symptoms of the illnesses include but are not limited to
feeling sick after activity (known as post-exertional malaise), memory
and concentration problems, and unrefreshing sleep (IOM, 2015).

Some researchers suggest that ME and CFS were first conceptualized under
the diagnostic label 'newrasthenia,' defined as a neurological disease
characterized by muscle weakness or fatigue. Notably, neurasthenia was
one of the most frequently diagnosed illnesses in the late nineteenth
century. However, use of this term had substantially decreased by the
mid-twentieth century (Wessely, 1994)

Throughout the twentieth century, several outbreaks of idiopathic,
fatigue-related illneses occurred, including 'atypical poliomyelitis' at
Los Angeles County Hospital in 1934 (Meals, Hauser, & Bowe 1938),
'encephalomyelits' at the Royal Free Hospital in London in 1955
(Crowley, Nelon, & Stovi 1957), and 'chronic mononucleosis-like
syndrome' in Lake Tahoe, Nevada, in 1984 (Barnes, 1986). After the Lake
Tahoe outbreak, national attention began to focus on this illness
(Wessely, 1994), and in 1988, it was named donc fatigue syndrome by the
Centers for Disease Control and Prevention (CDC; Holmes, Kaplan, Gantz,
Komaroff, Schonberger, Straus, ct al, 1988). For over two decades, the
ease definition that the CDC developed (Fukuda, Straus, Hickic, Sharpe,
Dobbins, & Komaroff, 1994) has bbeen prominently used in research and
clinical practice; however, the Institute of Medicine (10M) recently
developed an updated clinical case definition (IOM, 2015).

The annual direct and indirect costs of ME and CFS in the United States
are estimated to be between $19 and $24 billion (Jason, Benton, Johnson,
& Valentine, 2008). Individuals with ME and CES have an increased risk
of cardiovascular-related mortality and a lower mean age of death by
suicide and cancer in comparison to the general US population
(McManimen, Devendorf, Brow Moore, Moore, & son, 2016). In addition,
arthritis, high blood pressure, fibromyalgia, and multiple chemical
sensitivities are commonly comorbid (Jason, Porter, Hunnell, Brown,
Rademaker, & Richman, 2011). Although no virus has been identified as
the cause of ME and CFS, the immune system may be overactive (Fischer,
William, Strauss, Unger, Jason, Marshall, etl, 2014), and there is and
fibromyalgia using regression tree analysis and artificial neural
network analysis, composed of computer-based models used to evaluate
complex correlations. The patients were randomly divided into two
groups. One group served to derive classification criteria sets by
sophisticated procedures, including artificial neural networks in
parallel. These criteria were then validated with the second group.
Symptoms that best differentiated patients with ME and CES from the
other patients were acute onset of fatigue and sore throat.
Additionally, a recent study highlighted that the duration of
post-exertional malaise symptoms can distinguish ME and CFS from other
chronic illnesses (Cotler, Holtzman, Dudun, & Jason, 2018). The lesson
that is apparent from this section is that it is essential for a
consensus on a case definition among investigators for establishing a
solid empiric foundation in any illness or disease.
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Esther12 · Oct 20, 2020

Andy said: ↑

Now surely that is two communities?
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Or one community for 'ME and CFS'.

Andy said: ↑

Not helped by researchers dividing us into ME and CFS groups.
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I thought it was ambiguous on this point.... but that could create another reason for division!

Snow Leopard · Oct 21, 2020

Esther12 said: ↑

Or one community for 'ME and CFS'.
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So there is ME, CFS, ME/CFS, ME & CFS, so we're up to four different communities so far!

Andy · Oct 21, 2020

Snow Leopard said: ↑

So there is ME, CFS, ME/CFS, ME & CFS, so we're up to four different communities so far!
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Don't forget CFS/ME. So anywhere between one and five different communities have got to stop being difficult and agree with each other what we should call our illness. It's not as if we have anything better to do with our time.

cfsandmore · Oct 21, 2020

Andy said: ↑

Don't forget CFS/ME. So anywhere between one and five different communities have got to stop being difficult and agree with each other what we should call our illness. It's not as if we have anything better to do with our time.
Click to expand...

Don't forget the baby in the family, SEID.

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