Discussion in 'PsychoSocial ME/CFS Research' started by Andy, Dec 8, 2018.
Paywalled at https://www.sciencedirect.com/science/article/pii/S0738399118308838
So what were they comparing this to? People with NO health issues?
Might have been a more interesting study, if they had also looked at various other named diseases eg:
and then to compared “Chronic Fatigue Syndrome”.
Guess which would get least notional support!!!
Did they ask any young people with 'CFS' what their experience was? No. Anyone can express good intentions, but reality can be very different. I fail to see the usefulness of this study.
It sounds like a simple student project. Get a bunch of students to answer a hypothetical question about what support they might give to a friend diagnosed with CFS, and compare it with what another sample of students says they would do for a friend with symptoms without a name.
Conclude that it's helpful to have a name for your condition.
Why not actually ask pwME, and people with another better known and equally disabling condition, about how supportive their friends actually are?
This might have been more useful in the 90s when there was debate as to whether to diagnose us at all and if it was harmful too. Perhaps that still lingers in some areas. CFS versus nothing wins but CFS generally is a handicap name afaic.
We have probably all heard "I'm tired too", when the CFS label is mentioned.
Support from friends for having CFS, does occur, but in my experience is rare. People have responded by saying CFS is short-lived, non-existent, a scam, just burn out etc.
I use the term ME now, and have for years. People think this sounds dire - which it is. People laugh at the CFS label.
This study seems to be a response to the justified disgust the ME community has for the stupid term "CFS". This research is unconvincing re real world experiences.
The abstract sounds like they compared a hypothetical person with tiredness symptoms and no diagnosis to one with tiredness symptoms and a CFS diagnosis. Sort of a no brainer. A comparison with a range of alternative labels (ME, SEID) may have started to be interesting.
People's hypothetical support often greatly exceeds their actual support. I, of course, am really going to end world hunger.
I'm going to end all wars!
From the 2015 IOM/NAM report:
Separate names with a comma.