Open impact of chronic fatigue syndrome CFS/ ME on identity construction among young adults

@Dania Ala - I know you have designed your study for a certain age range, 18-25, but I wonder if interviewing people with ME aged, say, 25 and over, who have been sick with ME since they were children and are now adults, could be informative. I know that would be a memory thing, a retrospective, but would provide insight into growing up with ME.

I have seen very insightful accounts by adults' with ME about their experiences as children/youngsters with ME. Unfortunately those accounts often include the very real pressure families are under from schools re attendance, and from social services. Families, mothers especially, being suspected of encouraging, inducing illness in their children and referred to social services for investigation, apparently 1 in 5 families of children with ME.

'Carol Monaghan MP - Children with ME - House of Commons ME debate'




Also, interviewing people with ME (pwME) who are beyond the identity forming stage *may* reduce some of the hazards, likely harms, which may result from young adults being interviewed about ME and the identity forming thing, and everything about it, which includes all the disbelief, the losses, the disease denial, the loss of friendships, loss of education possibilities, loss of the possibility of fulfilling life ambitions, loss of relationships potential, family members' disbelief etc etc.

I suspect you are not aware of all the harms that are inflicted on pwME by the medical/society denial of ME, and medical/society abuses of pwME.

Though really, losing one's life to a serious illness, an illness which is perpetually and very publicly disputed, denied, gaslighted, and actually vilified, creates the most massive psychological pressures whatever age the pwME is. PWME who became sick in their 20s/30's/40's etc also face a devastating loss of identity and have to rebuild a new identity somehow.

Am struggling to articulate these thoughts, Not sure if I have expressed that very clearly,




Edit Add:

Some important Reports by the ME charity for children/young people, The Tymes Trust:

'False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)'

First published in the peer reviewed journal Argument and Critique

https://www.tymestrust.org/pdfs/falseallegations.pdf



'The Forgotten Children - A Dossier of Shame' 2003

'Tymes Trust presented this document to the Prime Minister on the 12th of May 2003. It details shocking statistics the Trust has collated from information supplied by families of children with ME.'

'Tymes Trust has evidence that the very systems set up by the government to help sick children and young people are being interpreted in ways that either ignore children with ME, or threaten, bully and intimidate them'

https://www.tymestrust.org/pdfs/theforgottenchildren.pdf


Further publications and Reports by the Tymes Trust.
https://www.tymestrust.org/tymespublications.htm

https://www.tymestrust.org/



2024: accusations of child abuse against parents of children with Long Covid (also mentions similar against families of children with ME):

https://www.s4me.info/threads/artic...-fii-accusations-in-me-cfs.38203/#post-528131

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Lou B Lou said:
@Dania Ala - I know you have designed your study for a certain age range, 18-25, but I wonder if interviewing people with ME aged, say, 25 and over, who have been sick with ME since they were children and are now adults, could be informative. I know that would be a memory thing, a retrospective, but would provide insight into growing up with ME.

I have seen very insightful accounts by adults' with ME about their experiences as children/youngsters with ME. Unfortunately those accounts often include the very real pressure families are under from schools re attendance, and from social services. Families, mothers especially, being suspected of encouraging, inducing illness in their children and referred to social services for investigation, apparently 1 in 5 families of children with ME.

'Carol Monaghan MP - Children with ME - House of Commons ME debate'




Also, interviewing people with ME (pwME) who are beyond the identity forming stage *may* reduce some of the hazards, likely harms, which may result from young adults being interviewed about ME and the identity forming thing, and everything about it, which includes all the disbelief, the losses, the disease denial, the loss of friendships, loss of education possibilities, loss of the possibility of fulfilling life ambitions, loss of relationships potential, family members' disbelief etc etc.

I suspect you are not aware of all the harms that are inflicted on pwME by the medical/society denial of ME, and medical/society abuses of pwME.

Though really, losing one's life to a serious illness, an illness which is perpetually and very publicly disputed, denied, gaslighted, and actually vilified, creates the most massive psychological pressures whatever age the pwME is. PWME who became sick in their 20s/30's/40's etc also face a devastating loss of identity and have to rebuild a new identity somehow.

Am struggling to articulate these thoughts, Not sure if I have expressed that very clearly,



Edit Add:

Some important Reports by the ME charity for children/young people, The Tymes Trust:

'False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)'

First published in the peer reviewed journal Argument and Critique

https://www.tymestrust.org/pdfs/falseallegations.pdf



The Forgotten Children - A Dossier of Shame 2003

'Tymes Trust presented this document to the Prime Minister on the 12th of May 2003. It details shocking statistics the Trust has collated from information supplied by families of children with ME.'

'Tymes Trust has evidence that the very systems set up by the government to help sick children and young people are being interpreted in ways that either ignore children with ME, or threaten, bully and intimidate them'

https://www.tymestrust.org/pdfs/theforgottenchildren.pdf


Further publications and Reports by the Tymes Trust.
https://www.tymestrust.org/tymespublications.htm

https://www.tymestrust.org/

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@Dania Ala

Edit Add:

Some important Reports by the ME charity for children/young people, The Tymes Trust:

'False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)'

First published in the peer reviewed journal Argument and Critique

https://www.tymestrust.org/pdfs/falseallegations.pdf



The Forgotten Children - A Dossier of Shame 2003

'Tymes Trust presented this document to the Prime Minister on the 12th of May 2003. It details shocking statistics the Trust has collated from information supplied by families of children with ME.'

'Tymes Trust has evidence that the very systems set up by the government to help sick children and young people are being interpreted in ways that either ignore children with ME, or threaten, bully and intimidate them'

https://www.tymestrust.org/pdfs/theforgottenchildren.pdf



Further publications and Reports by the Tymes Trust.
https://www.tymestrust.org/tymespublications.htm

https://www.tymestrust.org/



2024: Accusations of child abuse against parents of children with Long Covid (also mentions similar against families of children with ME):

https://www.s4me.info/threads/artic...-fii-accusations-in-me-cfs.38203/#post-528131

.
 
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Hello everyone,

Thank you all for your support and insights into my research. I would like to inform you that I did bring it up for discussion with my supervisor.


Here are the changes we are making based on the feedback:

Regarding the interview process, my supervisor and I have decided to shorten the duration to 20-30 minutes, depending on the severity of ME, to accommodate participants with varying levels of severity and also to provide the interview questions in advance, as JemPD suggested.


We've taken Lou B Lou's suggestion about including individuals over 25 in the research, focusing on their reflections on when they were diagnosed or experienced symptoms of ME/CFS during their young adulthood and reducing potential harm to the participants.


I want to take a moment to express my deep appreciation for your feedback and for taking the time to post your comment. I am really glad to hear from the ME/CFS community.

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Hutan said:
Thanks for the added information Dania Ala.
I do feel somewhat reassured after reading the attached files. My sense from them is that the primary assumption is that the disease and societal attitudes towards it affect young people's experience of the transition to adulthood. As opposed to an underlying assumption that childhood experiences and personality flaws cause the disease and that this research aims to find evidence to support that view. Is that correct @Dania Ala?

Background

I didn't quite understand that last sentence though. With that reference to 'causal attributions', what is assumed to cause what? Will 'a struggle to maintain a coherent sense of identity' be evaluated as a cause of ME/CFS?



I doubt that the highlighted sentence is true - "essential" sets a very high bar for relevance. For thousands and thousands of years, most people muddle through from adolescence to adulthood, with the transition largely unobserved and ignored by science, and with the presence or absence of any formal understanding of the process having minimal impact on their psychological wellbeing.



Protocol
The main issue of note I think is the aim to do 7 to 10 interviews, probably mainly of UK university student volunteers. As I've commented before, it's really important to be aware of the limited understanding that this small self-selected sample will provide, and to not extrapolate it to all young people with ME/CFS.



The list of negative consequences does not include the possible impacts on family, or on the ME/CFS community, should the conclusions made by someone without substantial knowledge of ME/CFS from a highly selected sample of 7 to 10 interviewees turn out to be wrong.



Dania, what information on the purpose and aims of the study do you expect the debrief form to contain that the information provided before the interview will not? Can we see Appendix D? Have you contacted the patient charities you list to confirm that they can actually provide timely support to anyone feeling in need of such support after the interview? I know some members have found that it is very hard to access support. What medical professionals who specialise in CFS will participants have access to during and after the study?


A suggestion for you. You could invite your participants to have a zoom call with you after you have drafted but not finalised your dissertation - a group call where you present the results of your study. It would be a way of being accountable, and double-checking that you have got things right. You could ask them to discuss their participation in your study - what was interesting, what could have been done better.

Again, thanks for responding so constructively to our comments. I hope your study goes well and is a useful experience.
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Sorry can I ask which document these quotes are from I think I missed something
 
NelliePledge said:
Sorry can I ask which document these quotes are from I think I missed something
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I have got a bit confused but Dania has messaged me the protocol, which says what I have already read so I guess we were already given the background information in the protocol sent for ethical approval. I think Dania is uncertain what can be posted publicly.

My worry as for the toolkit study is how you can make any interpretation of a study of this sort since there are no controlled observations. You cannot draw any conclusions about cause and effect. So you cannot test any theories.
 
@Jonathan Edwards and @NelliePledge

Regarding your concern about my study, I understand the importance of controlled observations in drawing conclusions about cause and effect.

However, my research approach is qualitative in nature, and there is a lack of this kind of research. Instead of testing theories, I aim to explore the lived experiences of individuals with ME/CFS. Through interviews and analysis of their narratives, I hope better to understand their challenges, feelings, and needs. This qualitative approach allows for a rich exploration of their experiences, which can ultimately inform strategies for support and assistance. I hope this clarifies the focus and goals of my research.
 
Dania Ala said:
However, my research approach is qualitative in nature, and there is a lack of this kind of research. Instead of testing theories, I aim to explore the lived experiences of individuals with ME/CFS. Through interviews and analysis of their narratives, I hope better to understand their challenges, feelings, and needs. This qualitative approach allows for a rich exploration of their experiences, which can ultimately inform strategies for support and assistance. I hope this clarifies the focus and goals of my research.
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Dear Dania,
I am aware that I can be quite an abrasive critic but I have the best of intentions. I would dearly love to rescue you from this bogus view of 'research' and recruit you to actually helping people with ME/CFS. Read Brain Hughes's book: it is all in there.

I have heard this 'qualitative research' thing a thousand times. On the NICE guideline committee Dr Chris Burton said the same about his 'pragmatic' trials - not designed to lookout cause and effect. Well, if you want to know if a treatment works, you are studying cause and effect. If you are studying the impact of CFS on identity you are studying cause and effect.

This term 'qualitative research' has become a label for 'the right thing to do' in certain social science areas and also in disciplines tacked on to medicine. But in biomedical science terms it is just a label for useless science. And the place is awash with it. There I no lack because it isn't any use anyway.

What you are describing is, as you say, a desire to explore. If you are not testing theories then you are not generating understanding and unless your exploring is rigorously defined in terms of selection and control data it is no use to anyone else wanting to test a theory.

To put it bluntly, it is gawping. It is OK to gawp at Nelson's column but gawping at other people's distressing experiences is not without a serious risk of harm. People who would like some honest help for their condition get very fed up with gawpers, most of whom then tell them what to do in a condescending way.

Research is not about following what other people do. It is about doing things other people haven't thought to do or have not managed to do reliably. It is tough and it is much tougher now because there is a sea of bad research drawing out anything useful.

You have probably been studying psychology for maybe 5 years. The members here have been looking at these problems for ten, some twenty five, years, and published papers in journals about the handling of psychological aspects. This forum is the leading resource on psychological aspects of ME/CFS - for those who really want to explore. And in simple terms what you will find demonstrated is that the 'psychology' of ME/CFS to date is a complete load of nonsense. Which is not surprising if, as is the case, psychologists follow Freud as the paradigm of how not to do science - fitting what you find to your theory rather than finding a theory to fit what you found.

I would go for a completely different project - the psychology of the 'experts' who insist in believing that the cure to ME/CFS lies in 'mind/body interaction' when there isn't the slightest evidence that it does. The psychology of the false beliefs of psychologists. That is where we really need progress.

And remember, I am not a patient or even a relative of a patient, just an old doctor who got intrigued by just how much these people with ME/CFS have been conned by bad 'research'.
 
To put it another way, it is time psychologists began to understand the psychology of research. Everyone else does - biomedical, pharmacologists, physicists, ecologists,. We all understand that the simplest of experiments is mired in your own psychology or, as Feynman the physicist said, 'the easiest person to fool is yourself.'
 
I think that's wise advice for future research by @Dania Ala. If you really want to make a difference for people with ME/CFS in the future, stick around here and continue to listen and learn.

I think you have made a good start by listening and adapting your project to provide questions in advance, invite older participants to look back at their early stages of illness and it's impact, and using shorter interviews. I take that as a positive step.

I understand this is a lot to take on board when you are in the middle of a Masters' degree, and already launched on your project. It's probably too late to change the information collection stage further without jeopardising completion of your degree.

However, I hope you will change the write up to reflect the fact that such an information collecting exercise with a few short interviews with a few patients cannot provide useful information that can be applied to the care of people with ME/CFS. What it can provide is a useful learning experience for you in listening to people, and in beginning to understand the limitations of such research methodology.
 
Jonathan Edwards said:
This term 'qualitative research' has become a label for 'the right thing to do' in certain social science areas and also in disciplines tacked on to medicine. But in biomedical science terms it is just a label for useless science. And the place is awash with it. There I no lack because it isn't any use anyway.
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I disagree that there is no place for ‘qualitative research’. I accept that it can not tell us about cause and effect and it is, even with great methodological care, subject to researcher bias. However in areas where we still have enormous gaps in our knowledge I would argue that it is akin to the observation of the nineteenth century naturalist. Such observation can then lead to more informed falsifiable hypotheses that can lead ultimately to rigorous experimental research.

Indeed I would argue if the misnamed bio psychosocial researchers into ME had started with more rigorous observation of and discussion with their patients we would never have had the unscientific mess of such as the infamous PACE study. Rather we would be seeing more in-depth physiological studies of clearly defined post exertional malaise.

The main difficulty in qualitative research is to know if the framework used to inform the patient interaction will elicit ultimately helpful data or obscure the patient reality. Inevitably research at this stage is something of a boot strap operation, but as long as the researchers are aware of its limitations it may be a useful first step even if it just provides a structure that subsequent researchers dismantle.
 
Peter Trewhitt said:
I disagree that there is no place for ‘qualitative research’.
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Aha, but so would I in that sense.

Almost all of my research was qualitative research in the sense that I studied qualitative differences between cell populations in tissues and the immune system that did not need any numbers. Identifying the macrophage subpopulations in synovial tissue was very like nineteenth century naturalist work.

But that is not what we are dealing with. This is Qualitative Research with capital letters. And this term is, as far as I know, only ever used in disciplines allied to medicine like psychology and rehabilitation as a justification for work that to be of value needs certain parameters to be adequately controlled but which are not adequately controlled. It is always 'But this is Qualitative Research' so we don't need to know if our sample is representative or what would have happened if the disease had not occurred or whatever. And it is always in the context of trying to answer a question or test a theory about causation that cannot be tested - the impact of this on that...

If we want a nineteenth century naturalist approach then the thing to do is browse this forum for hours noting all the ways people interact and report their stories. There is no earthly point in bothering people with interviews - S4ME contains a wealth of material that would take a whole masters year to read through. That is the approach I have taken - to listen every day and to learn.

The other side of the nineteenth century naturalist approach is of course putting animals in zoos and standing on a platform viewing their antics shuffling back and forth in a cage - perhaps making wise comments like ' look, the rhino seems to have problems with his identity construction'. Fortunately, some more sensible people came along and simply said - that is cruel, stop it and go back to observing in the field in a way that does not disturb.
 
Qualitative research by PhD nurse researchers of FM subjects was the only repository of the personal reactions of PwFM to their illness and its effects on their lives that I've found, outside of online support group members.

That a health profession took the time to investigate the effects of illness on the lives of FM patients was a support in itself.

Does this type of research uncover any previously unknown symptom or association that warrants further investigation?

There can be problems with abstracting recurrent themes or setting up a framework of questions in this type of literature, but if done well and subjects are given free rein over time to express how the impacts of the illness or condition affects them, it's superior to the psychological 'research' of FM.
 
Jonathan Edwards said:
I would go for a completely different project - the psychology of the 'experts' who insist in believing that the cure to ME/CFS lies in 'mind/body interaction' when there isn't the slightest evidence that it does. The psychology of the false beliefs of psychologists. That is where we really need progress.
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+1

But be under no illusions about the resistance you will meet within the profession, @Dania Ala.
 
Peter Trewhitt said:
Such observation can then lead to more informed falsifiable hypotheses that can lead ultimately to rigorous experimental research.
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I agree with this take and disagree with Jo's. There is a lot of awful qualitative research in public health, just as there is awful quantitative research. No one in their right minds is using qualitative research to settle issues of cause and effect--I mean, maybe they're trying to, but that's not a proper use of it, and attacking it for something it's not designed to do doesn't make a lot of sense to me.

Good qualitative research is designed to find out things you might not have found out had you not talked to people in depth about what's going on or if you just drew up a questionnaire without having much insight. I suppose you could argue that, well, that's just what you do in preparing for quantitative studies and that there's no reason to write it up as "research." But i don't see why people shouldn't publish what they find. I think qualitative researchers, at least in public health, can be too eager to make it be "science" with all sorts of methods and terminology to make it sound like "science." That's irritating to me--everything they talked about was stuff done in journalism all the time, we just don't give it names. Like "coding" the data--that's just reading through your notes or transcripts and figuring out what people are talking about.

To me it's really a form of formalized journalism--or, if you will, observation--describing things without trying to draw out cause and effect. Maybe ideas about possible cause and effect, or things to test later. It's used to generate hypotheses that can then be tested in more rigorous research. I don't think making categorical statements about it being useless is warranted. Bad qualitative research, even a lot of it, doesn't invalidate the idea of good qualitative research.
 
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