Psychologists using forum posts for research papers promoting psych theories of ME

[Countrygirl]

The document is a doctoral thesis by a prospective clinical psychologist from the University of Exeter who has investigated the interactions of online ME forums.

She seems particularly keen to find material to enable the promotion of psychological therapies and notes that people are prepared to acknowledge psychological factors when discussing the illness amongst themselves when there is no (or so they think ) researcher or doctor evesdropping on their conversaton.

While I am aware that many of our threads are public I prefer to think that non-members who read our posts are other sufferers who can benefit from reading our contributions. I can't say I am happy with the thought that researchers of the BPS viewpoint are copying and misapplying our material. I trust that this will not be permitted here, although I am not sure if permission has to be granted.

The relevant material is from page 50 onwards.

https://ore.exeter.ac.uk/repository/bitstream/handle/10871/16296/KennedyA.pdf?sequence=1&isAllowed=y

This research highlights possible changes in patients’ views about psychological and physical influences of CFS/ME. Future research might explore factors mediating acceptability of psychological interventions. However, posters were sensitive to being “used” for research. Future research might explore couples’ (Brooks et al., 2014) and families’ (Donalek, 2009) experiences. Recommendations are: -  Investigating using varied online communications in health research;  Researching user-generated data gathered across online platforms;  Involving people with CFS/ME in research design  Researching experiences of families and friends, and  Investigating conditions for patient acceptance of a psychological component for CFS/ME

Conclusion

Posters jointly attempted to raise the social status of a social identity of having CFS/ME by making social comparisons with outgroups and seeking positive attributes for their ingroup. Through comparison with family, friends and doctors, posters positioned themselves as active in seeking information about and managing their condition. Comparisons with “pretty useless” doctors furthered a discourse of people with CFS/ME as experts in their condition. In particular, this study highlights how the supportive forum talk and development of an ingroup with shared understandings formed an environment in which some posters were able to explore having an illness with possibly psychological causes

 

[keenly]

Ignore this irrelevance.

Do not let cretins occupy space in your mind. Other studies have, and will prove her wrong.

God bless.

 

[Tally]

I can't say I am happy with the thought that researchers of the BPS viewpoint are copying and misapplying our material

Any researcher who uses online forums as a source should be laughed out of the room (unfortunately far more ridiculous things have already been done in BPS research and it's still taken seriously).

This is not a forum made up of people with ME/CFS, this is a forum made up of anyone with an internet connection. Even the said researcher can pose as a patient and write anything.

I'm fairly sure most of us are patients and only a small number of people have stumbled upon here or are maliciously posing as patients, but "I'm fairly sure" has no part in serious science.

I would be very interested to see how they explain which ME/CFS definition they used to diagnose forum members

Still it's a good reminder that everything we write here can be read by anyone.

 

[Pink]

If someone is here for research purposes, I think they need to let people know.
I would not appreciate my posts or info being used by anyone.

 

[Countrygirl]

If someone is here for research purposes, I think they need to let people know.
I would not appreciate my posts or info being used by anyone.

No, I agree!

I hope they would have the courtesy to ask permission and I hope sincerely that it wouldn;t be granted.

 

[Countrygirl]

Any researcher who uses online forums as a source should be laughed out of the room (unfortunately far more ridiculous things have already been done in BPS research and it's still taken seriously).
Still it's a good reminder that everything we write here can be read by anyone.

I think we need to form teams to man our ramparts with stun guns.Blat the blighters before they grab our posts for their nefarious ends. Any volunteers?

 

[Pink]

i have heard of this happening on other forums too, I guess it's a widespread issue.

 

[Runner5]

Grrrrr !!!!!!

 

[boombachi]

No, I agree!

I hope they would have the courtesy to ask permission and I hope sincerely that it wouldn;t be granted.

The author said that a statement about the research was placed on the forum and regularly pinged to the top. Some people refused consent to include their posts.

I appreciate the ethics of this but the tone of the paper is patronising and insulting. The whole point seems to be how can psychological therapies be sold to people who believe people with a mental health condition are in a social class below them.

I am not aware of any evidence that pwme believe this. Perhaps this researcher should aquaint herself with the resons why pwme reject psychological therapies before investing so much time making an argument that is completely beside the point.

 

[Kenny Banya]

The document is a doctoral thesis by a prospective clinical psychologist from the University of Exeter who has investigated the interactions of online ME forums.

She seems particularly keen to find material to enable the promotion of psychological therapies and notes that people are prepared to acknowledge psychological factors when discussing the illness amongst themselves when there is no (or so they think ) researcher or doctor evesdropping on their conversaton.

While I am aware that many of our threads are public I prefer to think that non-members who read our posts are other sufferers who can benefit from reading our contributions. I can't say I am happy with the thought that researchers of the BPS viewpoint are copying and misapplying our material. I trust that this will not be permitted here, although I am not sure if permission has to be granted.

The relevant material is from page 50 onwards.

https://ore.exeter.ac.uk/repository/bitstream/handle/10871/16296/KennedyA.pdf?sequence=1&isAllowed=y

You might like to know that a Clinical Psych doctorate is not the same rigour as a PhD (putting aside the quack field that psychology is)
Many just do the thesis to get the title of ‘Dr’ when they couldn’t care less for research

 

[matt321]

A couple of well known things to consider.

-Looking at only what can be easily observed instead of what is easily believed has been a powerful and successful approach to the most successful people in our history.

-People create an interpretation of their own reality that fits their circumstances. They will defend this position. The closer we get to the edge of someones view of their reality, the more they will attack to defend their position.


This researcher has quantified what most clinicians (including your favorite NY CFS Docs) believe to be the largest hurdle in moving someone through chronic illness. They correctly observed what is actually happening. Those of us who have recovered all had to develop an awareness of what the reality was, not what we wanted it be.

Looking at myself, I struggled in this regard until I said. F it. Im going to find mentors that will show me what I want to know. Im going to be honest with myself. Im going to lay it all out for judgement...so that I can learn. So that I can improve.

m sure everyone is aware that this is from 2014.

 

[Sushi]

I remember this study being discussed here before but the details are hazy (Hazy is us!). If anyone has time to do a search, you may find something as the study rings a bell.

I can't say I am happy with the thought that researchers of the BPS viewpoint are copying and misapplying our material. I trust that this will not be permitted here, although I am not sure if permission has to be granted.

Here is what is written on our opening page (if you are not logged in):

If you are a researcher looking for study participants, please contact a Moderator prior to posting on the forums.

If we see anyone claiming to be doing research posting on the forum, we remove their post, contact them, ask them for explicit details (which they usually do not give--so they go away), and let them know that even if their project is approved to be posted on the forum (it has only rarely been--for instance Dr. Leonard Jason, DePaul University), that they must provide all their details--contact information, exact purpose, university, supervisor, how it will be used, where published etc. to the forum members.

Also, our posts are copyrighted and cannot be legally copied and posted elsewhere without written permission from the poster and the forum.

f someone is here for research purposes, I think they need to let people know.
I would not appreciate my posts or info being used by anyone.

Absolutely! Of course we can't prove that a person is who they say they are and there may be members here who are disguising their identities. So, even in Members' Only sections, be cautious about what you post. Google won't pick it up, but a member here for the wrong reasons might.

 

[Sushi]

A couple of well known things to consider.

"Well known"? By whom? That is not an adequate citation.

 

[kangaSue]

Ahh, Psychology ayy, the only medical profession where personal interpretation is acceptable in the forming of a diagnosis.
Talk to any "real" doctor, they all say the same thing about information gleaned by patients from forums. We are all just anecdotes whose individual opinions, symptoms or benefits gained don't matter as they don't apply to any other case.

 

[pibee]

Research psychologists do this for many illnesses, like cancer etc. Try not read too much into it. I know, it's hard.
Don't take it seriously, it will never impact medicine.

Also, in research they not so rarely use forum posts in general.

Our main problem is biomarker.


As much as I'm against BPS models, if you look at rituximab Phase III trial, placebo response was at least 18%, should this be investigated ? I guess. In many illnesses not just ME. I dont see personally possible benefit but I could be simply blind to it.

 

[lauluce]

If someone is here for research purposes, I think they need to let people know.
I would not appreciate my posts or info being used by anyone.

agreed

 

[Hugo]

If someone is here for research purposes, I think they need to let people know.
I would not appreciate my posts or info being used by anyone.

Yes its highly unethical to say the least.

 

[Hajnalka]

This researcher has quantified what most clinicians (including your favorite NY CFS Docs) believe to be the largest hurdle in moving someone through chronic illness.

Not sure what you mean with the "largest hurdle" that apparently "most clinicians" know about? Who are "your favorite NY CFS docs"? Nice nod to yuppie flu.

Looking at myself, I struggled in this regard until I said. F it. Im going to find mentors that will show me what I want to know. Im going to be honest with myself. Im going to lay it all out for judgement...so that I can learn. So that I can improve.

This is insulting and implies 17 million people, including tube-fed children, don't want to get better because they're not honest with themselves, fear judgement and don't want to learn... from mentors like you.

 

[boombachi]

Also, our posts are copyrighted and cannot be legally copied and posted elsewhere without written permission from the poster and the forum.
Absolutely!

Thanks for clarifying the situation @Sushi. Someone obviously thought this through when setting up the forum. I am grateful for that.

 

[E.man]

Piss poor 'research '.