quotes

I've been seeing many lately and thought a thread could be useful. Either coming from Long Covid advocates or professionals interested in learning about ME, people sometimes send out open requests for information, papers or studies on a specific topic that may span many subjects. Usually those...

Free full text: https://bjgpopen.org/content/early/2020/10/12/bjgpopen20X101143

I thought that this was of some interest as it has Wessely seeming to be unusually open about the limitations of questionnaires for assessing symptoms/disorders. Though this time that's seemingly partly because it goes against the 'work is good for you' creed used by the UK government (Waddell &...

I think I remember that one of the CBT or GET trials actively encouraged participants to no longer regard themselves as CFS patients. I thought I was confident it was the Dutch team of Bleijenberg and Knoop as they aim for a full recovery. But going through their papers, I can't seem the find...

Jim Al-khalili’s subject in his ‘The Life Scientific’ programme on BBC Radio 4 on Tuesday, February 14, was Professor Sir Simon Wessely. I thought given the new research into ME and Gulf War Illness this would be of interest. http://www.bbc.co.uk/programmes/b08dnr3g " Gulf War Syndrome. So...

An article from the American Psychological Association, that quotes Sharpe. (2013.) When symptoms are a mystery. https://www.apa.org/monitor/2013/07-08/symptoms "There has been an unfortunate split in our thinking between what's physical and what we think of as ‘real,' and what is mental, and...

I want to use this thread to collect studies suggesting that labeling patients with ME or CFS, makes them sicker (because it makes them think they have a real disease instead of psychosocial problems thay can overcome). Thus far, I've found two: Hamilton et al. 2005. The prognosis of...

I've heard it said and I see it on ME-pedia's main page for ME... but it's not cited. This is something that's hard to search for. Anyone know where this figure comes from? Is it for real? And how was it determined?

Another 'who said' post! I've got Vink's paper (2016). Even the PACE authors themselves say there was no difference between groups in lost employment, before or after the trial, and yet CBT and GET were more expensive anyway, and that may be enough. In general benefits is a terrible, terrible...

I know that there are at least a few who've said not to run blood tests or anything that might show objective dysfunction because that will strengthen false illness beliefs. Anyone have that on hand? Much thanks in advance, Jaime

Halp. Looking for a resource on this? I'll start the hunt through Phoenix Rising, but if someone has it handy, I'd really appreciate it.

"Missing the fizz: my long battle to understand the mysteries of ME" https://www.theguardian.com/society/2018/may/06/missing-the-fizz-my-long-battle-to-understand-the-mysteries-of-me The author has written a book on pursuing alternative healthcare. PACE bit, which does link to the new...

The PACE trial is a very large (n=640) and well conducted (1 year follow-up rate of 95%) multicentre randomised study, funded by the Medical Research Council, Department of Health and Department of Work and Pensions, and ironically also the Scottish Chief Scientist’s office, and one of whose...

While the UK BPS school seem to push a narrative of vexatious, dangerous patients, other scientists have praised PWME for their support. I thought it would be useful to collect those quotations - not least so that people can tweet them in response to the other narrative - but I can't remember...

I didn't know where to put this, but thought it of interest. From a Bristol Uni magazine in 2013 an article by Esther Crawley. http://www.bristol.ac.uk/media-library/sites/university/migrated/documents/nonesuch6.pdf (pages 15/16 on pdf, 29/30 in mag) Her mission: "‘The aim of my fellowship is...