Closed Uni of Edinburgh: Irritable bowel syndrome (IBS), chronic fatigue syndrome (CFS) and fibromyalgia in those aged 45 and older – the impact of emotions

Trish said:
I have sent the following to the student and his supervisor:
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Very well thought-out and worded message, @Trish. Hopefully it will persuade the candidate to think about what they're trying to achieve, whether it might help to know at least little bit about the conditions they're investigating, and whether questions like these can be even be answered meaningfully, let alone tell us anything actually worth knowing.
 
dave30th said:
I feel sorry for the student, who is obviously being steered wrong.
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I agree which is why I addressed it to both the student and their supervisor. I also cc'd another individual listed as a contact as 'If you would like to discuss this study with someone independent of the study please contact Dr Helen Griffiths at helen.griffiths@ed.ac.uk. It doesn't indicate in the information what her role is in relation to this research.
 
I wonder what the impetus for this questionnaire was in the mind of the student PhD candidate

Perhaps the student met one person or even several with one of said conditions whose emotions seemed over the top, or was depressed or despondent.

Life circumstances (a break-up of a romance, the death of a friend or family member or someone beloved, a chronic, unrelenting illness and I include the Thor-ripping your muscle tissues out while twisting them @ 18 hours a day in FM as an emotional stressor) happen to everyone.

Why, underneath it all, do psychs believe that they can reverse (or help ameliorate) a condition like this? In my experience as an RN, I've met quite a few psych professionals who have a lot of psych problems themselves and somehow believe that through helping others, they are helping themselves, though I don't know the exact mechanism.

Only the psychs who are smart enough to go deep and are open and whole to the existence of another, only these few offer any help, which is primarily just listening.
 
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shak8 said:
I wonder what the impetus for this questionnaire was in the mind of the student PhD candidate

Perhaps the student met one person or even several with one of said conditions whose emotions seemed over the top, or was depressed or despondent.
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Theory testing - I couldn't guess which particular suite of psych theories the individual is signed up to but the research has nothing to do with 'persons', it's just about matching replies to reported symptoms and then showing how patients can be catalogued and how that supports or doesn't support one or other theories (in reality hypotheses at best, often just weak propositions) about how people behave when ill, or er, believe they are ill !
 
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It's 2 weeks since I emailed the researchers. I had a brief acknowledgement from the student who said they would respond in more detail once the team had discussed it.

Time to send a reminder. I think I'll send some references and tell them about the importance of working with patients and mention DecodeME as a model of how to do that.
 
Jaybee00 said:
If this is tax payer funded research wouldn’t they have to give this to you? Also curious how they were able to secure funding for this study…what agency funded this.
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I suspect its funding is just the salary of the supervisor and any grant the PhD student got to live on for the 3 years his PhD takes. It doesn't cost much to run a questionnaire based study disseminated by social media.
I guess given Universities are publicly funded FOI could be used. I'll ask again if I don't get a reply soon.

I have sent the following follow up:
Dear Stuart Airey and Tim Bird,

I hope you have found time to discuss my email. I mentioned in a couple of places in it that I could send you references. I don't know what your knowledge of ME/CFS is and whether you have had a chance to look beyond the psychological studies working in the narrow field of psychosomatic medicine to get a more rounded view of current understanidng of the disease. I hope so.

Rather than give you a long list of research studies, I have collected a few more accessible sources. I hope you find them informative. They give the perspectives of expert clinicians and academics in fields including psychology and medicine, some of whom are also patients with ME/CFS or Long Covid.

1. Dialogues for a Neglected Illness is a Wellcome Foundation funded series of videos that give expert views on different aspects of ME/CFS. If you don't have time to watch them all, I recommend the Prologue and 'The Tangled Story' particularly.
https://www.dialogues-mecfs.co.uk/

2. Doctors with ME is a fairly new organisation of doctors either with ME/CFS or working with patients with ME/CFS or researching it. They have produced an excellent introduction to, and summary of, key points from the new NICE guideline:
https://doctorswith.me/nice-gp-upda...uBBhnXfi_TnrqJO4i9FsC8X9ZgOtRAkgf6U0xB6MFV-gU

3. A lot of clinicians are suffering from Long Covid and many of these are also being diagnosed with ME/CFS. Many are now recognising that they have misunderstood ME/CFS and are getting together with people with ME/CFS to help educate their colleagues. This article links a pair of videos in which psychology Professor Brian Hughes, and a group of doctors with either ME/CFS and Long Covid discuss the problem of psychologisation of physical diseases that don't as yet have a biomarker:
https://thesciencebit.net/2021/08/0...ong-covid-me-and-the-all-in-your-head-cartel/
All the sections in Professor Hughes' blog about ME/CFS are well worth reading, as is his book about the crisis in psychology research.

4. ME/CFS research in some places is improving vastly for the better because the researchers are embedding expert patients into the research team right from the start. An excellent example of this is the Genome Wide Association Study DecodeME run by Professor Chris Ponting at Edinburgh University. SInce it's your university, I suggest it might be worth making contact to learn more about how they are running the project and making use of their patient experts in ensuring the questionnaire part of the data collection is appropriate, accessible and acceptable for people with ME/CFS.
https://www.decodeme.org.uk/

I hope you find these resources enlightening and helpful.

I look forward to hearing from you.

Best wishes,
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As to funding, this is stated in the information in the original post

This study has been organised by Stuart Airey as part of the doctorate in clinical psychology and is sponsored by the University of Edinburgh. The study has not required any additional funding.
 
By odd coincidence, the student was writing to me just as I was writing to him.

Dear Trish Davis,

Thank you for your email regarding the project and your detailed feedback and questions.

The advertising for the study was designed to give a brief lay summary of the project to those who may be interested in participating. It was not our intention to imply causality and we apologise if this was misleading in any way. The participant information sheet does however give more information and states that “Some research suggests that difficulties in processing emotions and differences in the way we relate to others can contribute to the severity of symptoms. In addition, people suffering from IBS, CFS or fibromyalgia often feel as though their symptoms are not taken seriously by others, including medical professionals. This may result in emotional and relationship problems.”

The aim of the study is not to attempt to conceptualise these as psychological or psychiatric conditions, but to further investigate the existence (or absence) of relationships theorised in the existing literature, with a particular focus on people in later life. All of the questions from the survey that you have highlighted are part of standardised published questionnaires. We are aware of the limitations of a cross-sectional study design and any conclusions that can be drawn from the results. Limitations of the study will be highlighted in the final thesis document and any publications that may follow.

Advertising for the project has now ceased in order to allow us to begin our analysis. The results of the study will form part of a thesis submitted for appraisal by the University of Edinburgh. A lay summary will be made available to participants as outlined in the participant information sheet.

We would be pleased to provide you with a summary of the project when it is completed later in the year.

Best wishes,

Stuart Airey

Dear Stuart,

It seems that while I was writing to you, you were writing to me. I hope you will take advantage of the links I provided in my second email to further information about ME/CFS. I assume you are keen to learn more, since you have shown interest in studying this disease.

Thank you for your reply to my intial email. I will be interested to see what you manage to make of the results of your study, given all the flaws I identified in your questions. The fact that they are part of standard questionnaires does not preclude the possiblity that they include ambigous and inappropriate questions or that they can be misused to draw flawed conclusions. I am pleased to hear that you will be including limitations in your thesis.

People with ME/CFS have been subjected to decades of badly designed studies with questionnaires incapable of providing meaningful data. I hope you will learn from the problems I raised with your project. If you are interested in further pursuing ME/CFS research, I would welcome research designed with expert patients as part of the research team into better questionnaire design that enables patients to communicate accurately their lived experience. I would be happy to discuss this further with you, or provide links to some analyses of problems with questionnaires used in ME/CFS research, or you could join the Science for ME forum and invite discussion on this topic.

Here is an example of such a critique done by a group of patients and scientists:
https://www.s4me.info/threads/s4me-...-with-the-chalder-fatigue-questionnaire.2065/

I take the point that your lay explanation was not a full description of the projects' aims. Again I hope you will learn from my feedback the importance of not misrepresenting a study to the patient participants. Many patients are also scientists and clinicians, and will expect scientifically accurate representation of a study they are being invited to participate in.

A couple of requests:

1. Please can you provide me with a link to the research on which you base this statement:

Some research suggests that difficulties in processing emotions and differences in the way we relate to others can contribute to the severity of symptoms.​

2. I repeat my request from my initial email. I assume a University and ethics committee being public bodies that these documents would be accessible under Freedom of Information, but I'm sure you would agree we don't need to go through that formal process for you to provide this documentation to interested participants in the research.

I would like to ask you for a copy of the research proposal, hypothesis being tested, statistical analysis plan and ethics approval for this study.​

Please don't worry that I will keep emailing you with further commentary and questions. Once I have your answers to the above 2 questions I will leave you in peace to get on with your research, unless of course you invite me to comment on or provide further information from a patient perspective to contribute to your work.Thank you for offering to send me a summary later this year. I will look forward to reading your work.

Best wishes,

Trish Davis
 
Pseudoscience is cheap. No surprise it's thriving in a publish-or-perish model where the systematic review model has encouraged the proliferation of garbage quality papers in massive quantities.

It didn't take hindsight to know where this was going, but even with hindsight the formula is just too easy to let go. All the theater of academic with none of the effort.
 
Trish said:
All of the questions from the survey that you have highlighted are part of standardised published questionnaires.
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The questions beginning "During the past 4 weeks, how much have you been bothered by any of the following problems" section are from PHQ-15 (PDF). The question series beginning "How much does your illness affect your life?" is from the Brief Illness Perception Questionnaire (BIPQ).
 
I was reminded of my dissatisfactions with this study by the contrast with the study just published by Nina Muirhead and others looking at impact on family members, discussed on this thread:
https://www.s4me.info/threads/bmj-i...amily-members-vyas-muirhead-et-al-2022.27458/
Since I never got a reply to my request for some futher information, I'm going to send a reminder to the student and his supervisor, and send them a link to this paper as an example of good research done with patient participation in the study design.
 
You have done well Trish. The simple fact is that questionnaires which look at emotion, anxiety and depression were never designed to be used with a physically ill population.

In essence, these questionnaires are comparing the responses to an imagined norm of emotional health. When they are used in chronic illness they have to be recalibrated to allow for emotional problems that are caused directly by the consequences of being sick. At the very least there should always be a control group with undisputed physical problems such as MS.

And all that is without those ambiguous questions such as "Do you sleep well?" or "Do you experience nausea?" which can be a sign of emotional problems in someone in good health but are also directly associated with chronic illness.
 
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