A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs, 2020, Pilkington et al

https://www.sciencedirect.com/science/article/abs/pii/S0277953620305888

Some of these have been involved with annoying papers in the past

Social Science & Medicine
Available online 16 September 2020, 113369
In Press, Journal Pre-proof

 

what is with all these no blame frameworks ? . fraudsters in the world of medicine get away with causing immense suffering for their own personal gain and the patients are doubly insulted when said misconduct is eventually brought into focus and then dismissed as if no harm is done .

 

I ever thought that this is one of the main clues anyway. You cannot care for people if you handle them like things.

This indeed sheds light on some carers. - I have worked with old people as well as with handicapped ones, and should know a bit what I am saying. True, things are there often not the best, but most of the carers I had encountered have indeed cared for people, not for things.

I don´t consider myself for asking much. After all the sentence "explains" quite well why a complex disease is dismissed.

 

The main theme over the last few years in MUS/FND/BPS has been over how to manipulate people into accepting their delusional fantasy, how to lie better and more convincingly. They know the patients see through the BS and so put all their efforts into masking the BS. Very Orwellian.

So obviously in building an ideology that blames patients for their imaginary non-medical illness, they have to sell the idea that they are not doing that, just like they use the ridiculous software-hardware analogy to pretend they don't mean psychogenic when they 100% mean psychogenic.

Liars lie when you reward their ability to lie. This field has been built entirely on promoting the best liars, the best manipulators, the most skilled at getting false consent as an exercise in box-ticking, knowing full-well they have no true consent.

 

That abstract strikes me as being a way to pull the wool over the eyes of patients and "ordinary" people. Fill it full of words that any normal person won't understand. What on earth is "meta ethnography"? I looked it up and still have no idea of what it is and what its relationship to this study is.

But of course that is my fault. I'm over 70 so my mind must have gone. I'm stupid because I don't understand the words they use. I really object to stuff like this - if you're publishing a paper in English please use PLAIN English so normal people can at least have a chance of understanding what the hell you're going on about. Grrr.

 

File under swallowed-a-dictionary-of-post-modernist-academic-speak gobbledygook.

 

Merged thread

A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs

Abstract

Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is indicated by prolonged, medically unexplained fatigue (amongst other symptoms), not alleviated by rest, and causing substantial disability. There are limited treatments on offer, which may not be effective and/or acceptable for all people, and treatment views are polarised. We, thus, aimed to take a step back from this debate, to explore more broadly preferences for formal and informal support among people with CFS/ME. We used a meta-ethnography approach to examine the substantial qualitative literature available. Using the process outlined by Noblit and Hare, and guided by patient involvement throughout, 47 studies were analysed. Our synthesis suggested that to understand people with CFS/ME (such as their invisibility, loss of self, and fraught clinical encounters), it was useful to shift focus to a ‘relational goods’ framework. Emotions and tensions encountered in CFS/ME care and support only emerge via ‘sui generis’ real life interactions, influenced by how social networks and health consultations unfold, as well as structures like disability support. This relational paradigm reveals the hidden forces at work producing the specific problems of CFS/ME, and offers a ‘no blame’ framework going forward.

https://www.sciencedirect.com/science/article/abs/pii/S0277953620305888?via=ihub

 

NIHR article
People with chronic fatigue want to be taken seriously and to receive personalised, empathetic care
Published on 15 March 2021 doi: 10.3310/alert_45455

https://evidence.nihr.ac.uk/alert/chronic-fatigue-syndrome-people-want-personalised-empathetic-care/

eta:

 

"PWME have been complaining a lot that the treatment is no good and they have turned out to be right which is rather embarrassing so the best thing is to forget all about arguments about quality of evidence and focus on why the patients keep whinging by explaining that it isn't our fault that things have been screwed up."

 

The NIHR article is titled: "People with chronic fatigue want to be taken seriously and to receive personalised, empathetic care"

The first paragraph reads:

People with chronic fatigue syndrome (CFS) have extreme tiredness which lasts at least four months. The condition is also known as myalgic encephalomyelitis (ME). Other common symptoms of CFS/ME include headaches and problems with sleep, memory or concentration.
​

Surely, the NIHR staff involved in writing this article should have known that the misrepresentation of ME as "chronic fatigue" is a primary reason why people with ME are not taken seriously, and that is distressing for them [1]. As is their definition of the disease, which omits post-exertional malaise as the hallmark feature of ME. One would have expected them to read the diagnostic criteria proposed in the draft NICE guidelines, which they otherwise refer and link to...



[1] Johnson ML, Cotler J, Terman JM, Jason LA. Risk factors for suicide in chronic fatigue syndrome [published online ahead of print, 2020 Jun 12]. Death Stud. 2020;1-7. doi:10.1080/07481187.2020.1776789

 

I sent a mail to the NIHR Evidence contact address.
--

Dear Madam or Sir,

I am writing to you regarding a NIHR Alert article on a study
on ME/CFS that was published on 15 March ("People with chronic fatigue
want to be taken seriously and to receive personalised, empathetic
care") [1].

I would like to thank the authors for reporting on the
study by Pilkington et al. [2], which highlights the many aspects in
which the healthcare of people with ME/CFS is lacking. However,
there are a number of issues with the article.

First, the title "People with chronic fatigue want to be
taken seriously (...)" does not help to achieve this stated aim.

The misrepresentation of ME/CFS as "chronic fatigue" is a primary reason
why people with ME/CFS are not taken seriously. As the US National
Academy of Medicine concluded, the emphasis on chronic fatigue "can
result in stigmatization and trivialization", in that it fails to
account for the fact that "ME/CFS is a serious,
chronic, complex, and multisystem disease that frequently and
dramatically limits the activities of affected patients", with many
debilitating symptoms [3]. This emphasis on "chronic fatigue" has also
been shown to be a risk factor for suicide in people with ME/CFS, the
rate of which is estimated to be 7-fold greater than that in the general
population [4, 5].

The title of the article should be amended to "People with ME/CFS
(...)", or at the very least, "People with CFS/ME" as used by
Pilkington et al. [2]

(Note that NICE has now switched to using the term "ME/CFS" rather than
"CFS/ME", per the new draft guideline [6], so as to match the
international terminology in the scientific literature that is used by
other academic and research bodies -- e.g. in the US, the National
Institutes of Health, the Centers for Disease Control and Prevention,
the National Academy of Medicine --).

Second, the first paragraph of the article defines CFS as "extreme
tiredness which lasts at least four months". This is repeated under
the section "What's the issue?": "CFS/ME is a long-term condition that
causes severe fatigue".

This definition seems to be derived from that of
the outdated 2007 NICE guideline for CFS/ME (CG53) [7] but it omits the
hallmark feature of post-exertional malaise, even though the guideline
requires it and that it is now adequately set forth in the revised
definition of the 2020 draft guideline [6] -- which the article refers
to --. This is in line with the emphasis of modern diagnostic criteria
for ME/CFS on post-exertional malaise, and not fatigue or "tiredness"
[3, 8, 9].

The definition in the article should be amended to emphasize
post-exertional malaise rather than fatigue or "tiredness", and to match
that of the draft NICE guideline which requires all four of [6]:

1. Debilitating fatigability that is not caused by excessive
cognitive, physical, emotional or social exertion and is not
significantly relieved by rest

2. Post-exertional symptom exacerbation after activity that:
(a) is delayed in onset by hours or days, (b) is
disproportionate to the activity, (c) has a prolonged recovery
time lasting hours, days, weeks or longer

3. Unrefreshing sleep, which may include: (a) feeling
exhausted, flu-like and stiff on waking, (b) broken or shallow
sleep, altered sleep pattern or hypersomnia

4. Cognitive difficulties (sometimes described as ‘brain fog’),
including problems finding words, temporary dyslexia or
dyscalculia, slurred speech, slowed responsiveness, short-term
memory problems, confusion, disorientation and difficulty
concentrating or multitasking

I hope these corrections can be made so that, when reading your
otherwise supportive article, people with ME/CFS do not
feel that their condition is being trivialized, as has sadly been the
case too often in the past.

Sincerely,

X

--
References

[1]
https://evidence.nihr.ac.uk/alert/chronic-fatigue-syndrome-people-want-personalised-empathetic-care/

[2] Pilkington K, Ridge DT, Igwesi-Chidobe CN, et al. A relational
analysis of an invisible illness: A meta-ethnography of people with
chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their
support needs. Soc Sci Med. 2020;265:113369.
https://doi.org/10.1016/j.socscimed.2020.113369

[3] Institute of Medicine. 2015. Beyond
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an
Illness. Washington, DC: The National Academies Press.
https://doi.org/10.17226/19012.

[4] Johnson ML, Cotler J, Terman JM, Jason LA. Risk factors for suicide
in chronic fatigue syndrome [published online ahead of print, 2020 Jun
12]. Death Stud. 2020;1-7. https://doi.org/10.1080/07481187.2020.1776789

[5] Roberts E, Wessely S, Chalder T, Chang CK, Hotopf M. Mortality of
people with chronic fatigue syndrome: a retrospective cohort study in
England and Wales from the South London and Maudsley NHS Foundation
Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive
Search (CRIS) Register. Lancet. 2016;387(10028):1638-1643.
https://doi.org/10.1016/S0140-6736(15)01223-4

[6] https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline

[7] https://www.nice.org.uk/Guidance/cg53

[8] Bruce M. Carruthers, Anil Kumar Jain, Kenny L. De Meirleir, Daniel
L. Peterson, Nancy G. Klimas, A. Martin Lerner, Alison C. Bested,
Pierre Flor-Henry, Pradip Joshi, A. C. Peter Powles, Jeffrey A. Sherkey
& Marjorie I. van de Sande (2003) Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome, Journal of Chronic Fatigue Syndrome, 11:1, 7-115,
https://doi.org/10.1300/J092v11n01_02

[9] Carruthers BM, van de Sande MI, De Meirleir KL, et al. Myalgic
encephalomyelitis: International Consensus Criteria [published
correction appears in J Intern Med. 2017 Oct;282(4):353]. J Intern Med.
2011;270(4):327-338. https://doi.org/10.1111/j.1365-2796.2011.02428.x

 

@cassava7 thank you for sending this concise and very much to the point response.

 

https://twitter.com/user/status/1371768594854465537

 

The summary could give the impression that the patients had been asked what they wanted from professionals. However my guess is few if any of the papers actually asked that; most were probably general qualitative research studies. Asking patients specifically what they wanted might have yielded different results.

 

Don't know if you received a response @cassava7 but the article has been revised broadly in line with your requests, https://evidence.nihr.ac.uk/alert/cfs-me-people-want-personalised-empathetic-care/

 

However, they still write (bolding mine):

 

Bolding mine.

Am I being particularly obtuse here?

If they don't listen in the first place how will they be able to help with the physical symptoms? Especially if they just make knee jerk attributions to the causes of those symptoms.

If I want a therapist I'll book an appointment to.go.see one. I want my doctor to be my doctor not just bl@@dy sit there with an empathetic look on his face while listens but does naff all to help. Otherwise I might just as well stay home and talk to the dog. An excellent listener - unless he needs to tell me it's dinnertime.