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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. M

    Letter to Medical Director of NHS Highland (and others?)

    Thanks Willow, these are good points. My GP (who's good) says NHS Highland are planning to appoint a psychiatrist as clinical lead. Apparently he's the only consultant in the region interested in ME-CFS. Alarming....
  2. M

    Letter to Medical Director of NHS Highland (and others?)

    Thanks Sean, The 3 versions of the Scottish Good Practice Statement are here: http://www.show.scot.nhs.uk/GoodPracticeStatementonME-CFSforGeneralPractitioners.aspx It's the first one, http://www.show.scot.nhs.uk/App_Shared/docs/MainDoc.pdf that Kat is referring to. Page 17 suggests she's wrong...
  3. M

    Letter to Medical Director of NHS Highland (and others?)

    For the record, here's the response of Katrina Allen (AfME's current Scottish rep) to the draft letter: On health prof. education developments – I would encourage you to read through the SGPS full version (not just the summary). I think there’s some useful info in there and I think it could be...
  4. M

    Letter to Medical Director of NHS Highland (and others?)

    Sean, I usually spell out the lead author's name in the text. I'm less like to make mistakes that way...
  5. M

    Letter to Medical Director of NHS Highland (and others?)

    Thanks for the input so far folks. I need to look at my own 'alert' settings.
  6. M

    Letter to Medical Director of NHS Highland (and others?)

    Hi Folks, Please see my draft letter below. The NHS in South Lochaber are committed to putting a community service for ME in place. I want to make sure they don't get any silly ideas about CBT and GET... (but I also don't want to prevent the small proportion of people who would benefit from...
  7. M

    Initial thread

    Hello, I've been looking at the bottom line of Table 2 in the McCrone 2012 paper. I get slightly different numbers when I work out the percentages (eg. 84 % not 86 % lost employment for GET). Odd. I'd like to know about the people who didn't take any days off work. Were they employed before...
  8. M

    Initial thread

    Thanks for everyone's input. Tom, I think having a narrower focus is a good idea. I searched web of science for ' 'trial' or 'intervention' ' and ' chronic fatigue syndrome' or ' myalgic encephalomyelitis' ' - the result was almost 2000 papers - we don't have the capacity to trawl thru these...
  9. M

    Initial thread

    Hello, Sorry for the silence - I was unwell in Jan, organising training for GPs in Feb, and since have been recovering from organising training for GPs! My own measure of how well I am is my number of hours worked, since it is properly objective (I'm lucky to have a 0 hours, 0 salary contract...
  10. M

    Initial thread

    Hi folks, Thanks for meeting here, and thanks to Tom for setting up this discussion. I'm Meg, I've had ME for nearly 5 years. I’m now well enough to work quarter time or so (as a research scientist) in good weeks. I set up Lochaber ME a few years ago http://www.me-lochaber.org.uk/. My...
  11. M

    Initial thread

    Thanks for all the posts, folks, I've been off-line - I've not read 'em all closely but will come back to read properly - prob on Thurs. I replied to Mike at the Cochrane review, saying that the first step is a methodology study (i.e. not involving Cochrane, tho Mike would probably give helpful...
  12. M

    What do you want to ask Fluge and Mella?

    I'm aware I'm too late, but will post anyway, just in case it's something you can bring up later. There are two issues on my mind just now: 1) Hashimoto's thyrioditis has links to atypical coeliac (e.g. Hadithi et al., 2007, World Journal of Gastroenterology, 11, 1715-1722). Do Fluge and Mella...