Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A description of adult experiences, 2020, Essebo & Joqi

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Dolphin

Senior Member (Voting Rights)
From: Dr. Marc-Alexander Fluks


Source: Blekinge Institute of Technology (Sweden)
Date: January 23, 2020
URL:
http://www.diva-portal.org/smash/record.jsf?pid=diva2:1386311&dswid=-3647

http://www.diva-portal.org/smash/get/diva2:1386311/FULLTEXT02.pdf
Rem: Translation: Google


Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
(ME/CFS): A description of adult experiences
--------------------------------------------------------------
Jenny Essebo, Diyana Joqi
- Blekinge Institute of Technology, Faculty of Engineering,
Department of Health, Karlskrona, Sweden

Available from: 2020-01-23
Created: 2020-01-17
Last updated: 2020-01-23


Abstract

Background
Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex
chronic disease with unknown etiology and without medical cure.
Knowledge of the disease is low among health care professionals, which
can lead to patients leaving for a long time without support. The nurse
is responsible for updating her knowledge and supporting the people
through person-centered care to achieve health and reduce suffering. By
studying people's own experiences of the disease, based on their world
of life, new knowledge and understanding can be created.

Objective
To describe adults' experience of living with Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Method
A qualitative literature study was chosen for the method with an
inductive approach based on two pathographs and seven chapters from an
anthology. The content analysis was done according to inspiration from
Lundman and Hällgren Graneheim's description, the analysis was mainly
manifest with latent elements.

Results
The analysis resulted in three categories and six subcategories. In the
category Consequences of limiting life, it emerged that people felt that
life was limited due to the changed physical and mental abilities.

In the Changed I category, it emerged that the people experienced that
the one they were changed. In the category, Difficulties in managing the
disease, it emerged that people experienced difficulties in learning to
live with and accept the disease, but that they learned to manage it
using different strategies and a new way of thinking. They also
described experiences of lack of knowledge, difficulties in getting a
diagnosis and a feeling of not being taken seriously in contact with
health care.

Conclusion
Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has a
profound impact on the whole person, physically, mentally and mentally
as well as affecting relationships, family dynamics, functional ability,
well-being and everyday life. The disease is difficult to learn to live
with and there is a need for support, strategies and information from
the healthcare system to facilitate the person's adaptation to everyday
life and well-being.

Keywords: chronic fatigue syndrome, suffering, world of life, ME/CFS,
myalgic encephalomyelitis, myalgic encephalomyelitis/chronic fatigue
syndrome, nursing, pathographs, nurse, experiences, well-being

--------
(c) 2020 Blekinge Institute of Technology
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I have read the thesis in its enterity in Swedish. It's to long to translate, but I have translated some statements that I find troublesome or outright erroneous :

"Potential explanatory models has to do with autoimmunity, chronic infection, dysfunctions of the autonomic nervous system and the hormonal system, psychosomatic dysfunction and metabolic disease (Blomberg, Gottfries, Elfaitouri, Rizwan & Rosén, 2018)"
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" Because ME/CFS does not have any clear biomarkers the diagnosis is controversial."
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"An important part of the treatment is to teach patients strategies to conserve energy, of which PACE and Graded exercise therapy are examples. Patients may also have use for Cognitive Behavioral Therapy (CBT) to aid in changing adverse thought patterns and manage anxiety and stress relating to the disease. (Castro-Marrerol et al., 2016)"
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" Rest/recovery, sleep and diet are important parts in the care of the disease. Disturbed sleep patterns are common and for many people daytime naps feel natural to increase alertness and improve physical and mental functioning .

The nurse needs knowledge that this has little effect and interferes with the aim of a natural sleep pattern. Various sleep disorders are common and can exacerbate symptoms of fatigue, why it is important for the team to assess this, and then gradually introduce changes aimed at improving sleep patterns. (NICE, 2007)."
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" Gastrointestinal issues and allergies are common among these patients, and can cause inflammation and malnutrition (Castero-Marrero et al, 2016). Getting to the grocery store and cooking can also become difficult for the ill petson. The nurse's guidance to healthy eating habits and regular meals is therefore important."
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We are currently discussing in a Swedish ME-group if we should get in contact with the educational institution and the student's tutor, to alert them to the factual errors in the thesis.

Since this will be read by people soon to become nurses, coming in direct contact with patients, their knowledge surely spreading to colleagues etc, isn't it important that they aren't misinformed, giving potentially harmful advice?

Some people in the ME-group think this is petty and a waste of energy though, because it's just a masters thesis.
 
If you have the resources then it might be worth contacting the tutor. If it works out then the next batch might of nurses might be a little better informed.

Like you @Anna H I can see issues with every quote in your post. Especially -

" Gastrointestinal issues and allergies are common among these patients, and can cause inflammation and malnutrition (Castero-Marrero et al, 2016). Getting to the grocery store and cooking can also become difficult for the ill petson. The nurse's guidance to healthy eating habits and regular meals is therefore important."
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I completely fail to see how a nurse telling you about healthy eating and that regular meals are important are going to overcome being unable to go food shopping or shop online or prep and cook food. o_O
 
An important part of the treatment is to teach patients strategies to conserve energy, of which PACE and Graded exercise therapy are examples.
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Ehhhhhh what? Maybe the same way cocaine is a relaxant.

Really tired of seeing pacing framed as a treatment. Literally no one but deniers have ever pretend it is. It's hard enough to make progress on a complex problem, having people sow confusion about everything is maddening.
 
Rest/recovery, sleep and diet are important parts in the care of the disease. Disturbed sleep patterns are common and for many people daytime naps feel natural to increase alertness and improve physical and mental functioning .

The nurse needs knowledge that this has little effect and interferes with the aim of a natural sleep pattern.
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If you want a single example of how utterly disconnected these clowns are from the reality of our lives, their 'advice' on sleep and naps is a good one.

This stuff is nothing more than a tacit admission that they have no practical useful advice to offer us, and are refusing to face up to that cold hard fact.

Even after more than 35 years of dealing with this shit, it still amazes me the lengths they will go to in order to deny they know nothing, and are, if fact, grossly incompetent and doing serious harm.
 
rvallee said:
Ehhhhhh what? Maybe the same way cocaine is a relaxant.

Really tired of seeing pacing framed as a treatment. Literally no one but deniers have ever pretend it is. It's hard enough to make progress on a complex problem, having people sow confusion about everything is maddening.
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Right!!! It looks to me as if they don't even understand what they're saying themselves, if they did, at least it should say "pacing" instead of "PACE" . That sentence doesn't make any sense.

Exactly how I feel about this, it only creates confusion.
 
Invisible Woman said:
If you have the resources then it might be worth contacting the tutor. If it works out then the next batch might of nurses might be a little better informed.

Like you @Anna H I can see issues with every quote in your post. Especially -



I completely fail to see how a nurse telling you about healthy eating and that regular meals are important are going to overcome being unable to go food shopping or shop online or prep and cook food. o_O
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I can't see that helping either, and it's so patronizing, implying we are to ignorant to know what's good for us.
Thanks for the support @Invisible Woman :)
We're scraped a bit thin at the moment but trying to put something together.

@Sean I totally agree!

Thanks, I really value your input !
 
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rvallee said:
Really tired of seeing pacing framed as a treatment. Literally no one but deniers have ever pretend it is. It's hard enough to make progress on a complex problem, having people sow confusion about everything is maddening
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Chronic disease management is not treatment and i agree with you @rvallee

What i want my health care system to do is to look for treatments that are of value to me, which means that are likely to modify my disease. All that management stuff is aimed at adopting behaviors which falls within their guidelines on how to cope and manage this disease, which they usually like to lump with other diseases as well. Seemingly the understanding of the patients going through the program is that you must pace, do yoga or tai chi, eat what they tell you, take the supplements they tell you go to bet at 9PM and up by 7 AM, and you must practice mindfulness religiously. And if you fail to do those, then you are deemed non-compliant and there is nothing they can do for you. This is not medicine, it is CBT in disguise.

We all deserve so much better.
 
Anna H said:
Right!!! It looks to me as if they don't even understand what they're saying themselves, if they did, at least it should say "pacing" instead of "PACE" . That sentence doesn't make any sense.
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Ooh I didn't even make the connection and I think you nailed why they did, they think PACE studied pacing. Which, of course, any reasonable person would think and the whole point of this Orweillian acronym.

Which... uh... :facepalm:
 
rvallee said:
Ooh I didn't even make the connection and I think you nailed why they did, they think PACE studied pacing. Which, of course, any reasonable person would think and the whole point of this Orweillian acronym.

Which... uh... :facepalm:
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Also kind of Orwellian (or at least ironic) is that, in Latin, PACE means "with peace." It's usually used as an expression of deference to a respected person's contrary opinion, sort of like starting a sentence with "No offense..."

So... "Pace Mike, but I think this study* is for the birds."

[*PACE]
 
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