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

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.

 

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.

 

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:

 

By odd coincidence, the student was writing to me just as I was writing to him.

Spoiler: The student said:

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

Spoiler: I replied:

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

 

Thanks, Nightsong.

 

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.