The Lonely, Isolating, and Alienating Implications of ME/CFS. Boulazreg & Rokach. 2020

John Mac

John Mac

Senior Member (Voting Rights)
Full title:
The Lonely, Isolating, and Alienating Implications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Abstract
This article provides a narrative review on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) through a psychosocial lens and examines how this impairment affects its sufferers during adolescence and adulthood, as well as how it impacts family caregivers and healthcare professionals’ mental health.

Since there has been a lack of investigation in the literature, the primary psychosocial stressor that this review focuses on is loneliness.

As such, and in an attempt to help establish a theoretical framework regarding how loneliness may impact ME/CFS, loneliness is comprehensively reviewed, and its relation to chronic illness is described.

We conclude by discussing a variety of coping strategies that may be employed by ME/CFS individuals to address their loneliness.

Future directions and ways with which the literature may investigate loneliness and ME/CFS are discussed.
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https://www.mdpi.com/2227-9032/8/4/413



 
"Catastrophizing, defined as the general tendency to assumethatthe worst-case scenario will happen, presents challenges for the overly cautious ME/CFS sufferer. Pessimism, a fear of movement, and an intense irrational fear of expecting the worst to occur leads these individuals to isolate in an attempt to protect themselves from potentially negative exposure. However, this approach to confine and stay away from social and recreational pursuits is counterproductive; in fact, studies investigating the implications of social deprivation have shown that it instead increasespain perception [33,34]. Thus, kinesiophobia and catastrophizing may create a sort of negative feedback loop where an individual, wishing to mitigate symptoms, stays at home to “protect” themselves, only to have significant distress and an increase in pain."

Yea im not reading any more of this stigmatizing trash
 
A literature review with a ton of misinformation and distortion. Love the method: key word search of titles. Whoa, amazing.

Never ceases to amaze me how removed from science and how akin to religion psychology can be.

Funny how we have a thread on alienation and this article is yet another example of it.
 
Weird. Who could have known that discriminating against a disease had horrible consequences? Other than all the past and ongoing examples of the same thing done for the same reasons, obviously.

Great idea to reinforce this discrimination by repeating obviously false tropes, this guarantees decades of work for this jobs program. 1) Malign, insult, gaslight and discriminate a disease into ostracization, 2) study the horribly iatrogenically-enforced isolation as if it were part of the illness, rather than the criminal negligence of maligning, insulting, gaslighting and discriminating us.

In other news, casual drug use creates massive international drug industry, terrorism and extremely violent cartels capable of turning countries into chaos. Well, drug prohibition does but isn't it just the same? No? It isn't? Oh, well.

I have no idea why this is part of the "Special Issue "ME/CFS – the Severely and Very Severely Affected"". Very insulting.
 
MSEsperanza said:
the journal 'healthcare' or the publisher MDPI.
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They recently did a special issue on severe ME (this article is part of that special issues I think).

Thought this was interesting, although the reference simply refers to the announcement of research funding for ME in Canada, so it doesn't really provide more info
Initially deemed to be psychosomatic in nature [7] and as epidemic hysteria [8,9], this mislabeling has persisted to this day, leading researchers to make observation that the medical community continues to harbor “prejudiced opinions that it is not a real illness” [10] (p. 309). One example of this was seen in Canada; in 2016, the federal government’s scientific panel rejected a grant application for ME/CFS research, implying that “it was not a disease” [11]
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Merged thread

This article provides a narrative review on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) through a psychosocial lens and examines how this impairment affects its sufferers during adolescence and adulthood, as well as how it impacts family caregivers and healthcare professionals’ mental health. Since there has been a lack of investigation in the literature, the primary psychosocial stressor that this review focuses on is loneliness. As such, and in an attempt to help establish a theoretical framework regarding how loneliness may impact ME/CFS, loneliness is comprehensively reviewed, and its relation to chronic illness is described. We conclude by discussing a variety of coping strategies that may be employed by ME/CFS individuals to address their loneliness. Future directions and ways with which the literature may investigate loneliness and ME/CFS are discussed
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Open access, https://www.mdpi.com/2227-9032/8/4/413/htm
 
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I started reading this with interest and an open mind, but gave up when I'd read this paragraph:

Catastrophizing, defined as the general tendency to assume that the worst-case scenario will happen, presents challenges for the overly cautious ME/CFS sufferer. Pessimism, a fear of movement, and an intense irrational fear of expecting the worst to occur leads these individuals to isolate in an attempt to protect themselves from potentially negative exposure. However, this approach to confine and stay away from social and recreational pursuits is counterproductive; in fact, studies investigating the implications of social deprivation have shown that it instead increases pain perception [33,34]. Thus, kinesiophobia and catastrophizing may create a sort of negative feedback loop where an individual, wishing to mitigate symptoms, stays at home to “protect” themselves, only to have significant distress and an increase in pain.
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My bolding.
 
Trish said:
I started reading this with interest and an open mind, but gave up when I'd read this paragraph:
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FFS!

I have literally never come across one of these patients with 'intense irrational fears' and 'kinesiphobia' in 40-odd years. I would be astonished if anyone has. ME patients are some of the most resilient people I've ever encountered, even though all – and I mean ALL – would really benefit from protecting themselves a whole lot more that they actually do.

Yet another publication made for no reason other than to help someone hold onto their bloody salary, without the need to listen to and understand any of the patients they purport to be studying.
 
"Kinesiophobia is the most extreme form of fear of movement, and is defined as an excessive, irrational and debilitating fear of physical movement and activity resulting from a feeling of vulnerability to painful injury or reinjury, and it has been reported as a common feature of patients with CFS [18], fibromyalgia, .
Fear-avoidance is said to play a role in the so-called deconditioning syndrome which can either be expressed in a weakened muscle strength, or disordered muscle coordination, during physical activity [16]."
https://www.hindawi.com/journals/bmri/2013/580460/

"There appears to be no association between exercise capacity and kinesiophobia in adult patients with CFS who seek treatment for their symptoms."
https://www.archives-pmr.org/article/S0003-9993(04)00264-3/fulltext
 
Fear-avoidance is said to play a role in the so-called deconditioning syndrome which can either be expressed in a weakened muscle strength, or disordered muscle coordination, during physical activity [16]."
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Riiight. Santa is said to live at the North Pole with Mrs Claus and the elves. There's probably less evidence for the fear avoidance theory.
 
Barry said:
I'm beginning to think these BPS psychs are some of the most irrational people on the planet. Not just unscientific but completely gaga.
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I suspect they have little contact with patients, and when they do, are unable to understand because they're trained to interpret what is being said according to rigid theories that don't have much to do with the real world. The theories being designed to create jobs and make psychs feel important rather than actually explain anything.
 
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As such, Campling and Sharpe [26]) recommend cognitive behavioral therapy (CBT) to examine one’s thoughts, enhance rational thinking, and encourage positive and proactive cognitions which will usher similarly proactive behaviors. “Does CBT work for people with ME/CFS? [they asked]. Yes, it does seem to help. It is not a cure, but research including a number of clinical trials in different centers has shown that about two-thirds of patients who take part in such a program are able to do more and feel better” (p. 169).
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Have a cup of very low-quality evidence.
 
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