Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and cfs, McManimen et al, 2018

From Leonard Jason's group,

https://onlinelibrary.wiley.com/doi/abs/10.1002/jcop.21984

Full paper available at http://sci-hub.tw/10.1002/jcop.21984

 

This stands out to me.

 

The stigma and disbelief is in part fueled by the all in the mind narrative promoted by Wessely et al. They would disagree they are sending out this message but it's hard to interpret their statement about illness beliefs perpetuating the illness any differently.

Some relevant statements by Sharpe in the press:

http://www.dailymail.co.uk/health/a...fessor-claims-sufferers-not-push-recover.html

 

It's an interesting paper

 

Some extracts from the introduction:

 

Given the above, it's not really surprising many with ME or CFS suffer from depressive symptoms or suicidal ideation.

 

https://etd.ohiolink.edu/!etd.send_file?accession=osu1147705028

Unsupportive Social Interactions Inventory

Instructions: The following is a list of possible responses the person with you before your speech may have used when talking with you. Please rate each item by indicating how much of the response you received, on
a scale from 0 (none) to 4 (a lot).

1. "I told you so" or similar comment.
2. "Should or shouldn't have" comments about my role in the speech.
3. Asked "why" questions about my role in the speech.
4. Blaming me, trying to make me feel responsible for the speech.
5. Changed the subject before I wanted to.
6. Did not seem to know what to say, or seemed afraid of saying or doing the "wrong" thing.
7. Did not seem to want to hear about it.
8. Did things for me that I wanted to do and could have done myself.
9. Discouraged me from expressing feelings such as anger, hurt, or sadness.
10. Felt that I should focus on the present or the future and that I should forget about what has happened and get on with my life.
11. Felt that I should stop worrying about the event and just forget about it.
12. Felt that I was overreacting.
13. Felt that it could have been worse or was not as bad as I thought.
14. From voice tone, expression, or body language, I got the feeling he or she was uncomfortable talking about it.
15. Refused to provide the type of support I was asking for.
16. Refused to take me seriously.
17. Responded with uninvited physical touching (e.g., hugging).
18. Said I should look on the bright side.
19. Seemed disappointed in me
20. Seemed to be telling me what he or she thought I wanted to hear.
21. Told me that I had gotten myself in the situation in the first place, and now must deal with the consequences.
22. Told me to be strong, to keep my chin up, or that it should not let it bother me.
23. Tried to cheer me up when I was not ready to.
24. When I was talking about it, person didn't give me enough time, or made me feel like I should hurry.

 

https://slideheaven.com/losing-face...erceived-by-chronic-facial-pain-patients.html

 

I'm guessing 89.5% figure is from a 2002 paper, but I don't think of this one.

 

They don't mention that there are issues with screening programmes for suicidal ideation or anything else. Too many people can get treated. So these issues would need to be investigated.

 

Maybe, just maybe, if they started with not assuming we are lazy, mad scroungers instead of giving us meaningless surveys it would help?

 

Just to be rigourous:
There is a possibility that the experiences were no different between the groups, and that the people who were depressed and/or have suicidal ideation had a more negative impression or interpretation than the others (i.e. reversing the direction of causation from one proposed). This might even still be interesting.

Also even the measures of functioning and symptoms are self-reported, so theoretically people with suicidal ideation or depression might report higher levels of symptoms and lower levels of functioning than another group who objectively were similar e.g. if asked what they were able to do or not do.