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  1. Snowdrop

    Caretaking resources and info needed

    Hi @Kafka I've never read this so don't know how much it will help but there's this: http://www.stonebird.co.uk/Care Sheets.pdf and there might be something here: http://www.25megroup.org/info_Carers.html ETA: also found this but it requires payment to access...
  2. Snowdrop

    Healthwise to "retire the GET/CBT topics" from medical content

    That's really good news. Thanks Webdog for pursuing this.
  3. Snowdrop

    Radio Food Programme says doctors not taught about food

    I am coming late to this thread and have not read all posts (skimmed) I will try and stay on point although the conversation may have drifted elsewhere. I think teaching nutrition ought to happen in a simple way in grade school and then as a module in both biology and chemistry (with different...
  4. Snowdrop

    AFME decide Geneva is where their #millionsmissing contribution should be

    I expect that they are. But while I have no direct knowledge I expect that they may have other sources of funding too and that it is that funding that might be problematic. I do have one (sadly already vague) bit of knowledge of other funding -- it was announced here somewhere 50,000 pounds...
  5. Snowdrop

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    Do you actually consider that a likely possibility? I guess different styles come down to assessing probabilities. I don't consider it likely at all. I think judges (and certainly any open minded person)can put things into context and come up with what is reasonable or not.
  6. Snowdrop

    AFME decide Geneva is where their #millionsmissing contribution should be

    It's beginning to look to me very much like a charity that wants to be relevant to the patient population and do right by them but is also very much afraid to rock the boat in the UK. Again, it could be a who funds them issue. Certainly whatever it (might) be they won't feel at liberty to...
  7. Snowdrop

    Action for ME's administration and how that affects its views about treatment

    I believe in 2015 (and I expect since) SC pay was between 70-80 thousand pounds. I get this figure from the end of year 2015 trustee report and accounts under (pg 28) Staff Costs -- subheading number of employees whose emoluments amount for the purpose of taxation to over 60 thousand pounds -...
  8. Snowdrop

    Turning badmouthing of ME/CFS on social media into something positive - a fundraising possibility

    Or two hashtags that are short and make the point: #ImWithTuller #biosci4ME
  9. Snowdrop

    Book: A brief History of the worst ways to cure everything

    here https://undark.org/article/five-questions-lydia-kang/ is a link to an article in undark about the book in the thread title. I thought it might be of interest to someone here and maybe there might be someone here who might want to read the book.
  10. Snowdrop

    United Kingdom: National Inpatient Centre for Psychological Medicine (NICPM)

    And this has always been a big problem that this community is up against. When a person who is ill and suffering goes to a Dr and gets a diagnosis the person may well have zero knowledge of that illness and accept the Dr's conclusions. As a result the powers that be in the UK (and I presume...
  11. Snowdrop

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    @dave30th Well I thought you behaved admirably. And I thank you.
  12. Snowdrop

    David Tuller - Trial By Error: A Post About Andrew Lloyd

    So all of David Tuller's work has/will come to naught because he made a snarky comment about Lloyd. Good to know. Maybe you can volunteer to engage with these researchers. We wait with baited breath. ETA: sorry just had to come back and add that DT has done so much for this community and...
  13. Snowdrop

    Action for ME has joined S4ME

    Science requires debate/discussion. @Action for M.E. are still around whether PwME like it or not and so IMO they are very welcome to be here. With the caveat that joining and then remaining silent and not engaging with other members is quite creepy. In other words . . . Would like to see...
  14. Snowdrop

    IBS: Identification of an analgesic lipopeptide produced by the probiotic Escherichia coli strain Nissle 1917

    @adreno Can you describe your use of Mutaflor; what dose you used and how long before symptoms abated and what type of symptoms if you don't mind sharing? I'd be interested. ETA: didn't see above post.
  15. Snowdrop

    Treating patients with MUPS (article more interesting than its title)

    While it doesn't include ME there is actually a book on the subject: http://ca.wiley.com/WileyCDA/WileyTitle/productCd-0470890657.html Masquerading symptoms: Uncovering Physical Illnesses that present as psychological problems
  16. Snowdrop

    Unrest film - Jen Brea

    Is there any record of the panel discussion?
  17. Snowdrop

    Chronic fatigue syndrome (CFS/ME) symptom-based phenotypes & 1-year treatment outcomes in two clinical cohorts of adult patients.., 2017, Collin et al

    Maybe one day when we're more settled here we can come up with a system that scores these things. For now I'll volunteer the pink JPM for a two thumbs down score. I expect with the situation we find ourselves in (although rapidly changing thankfully) that there might need to be a score of...
  18. Snowdrop

    BBC: I made a film from my bed to prove my illness is real - Jen brea

    Is it normal for the BBC site to not take comments? Also, they provide Ms Lipman's twitter address if anyone wants to thank her.
  19. Snowdrop

    IgG - what is it good for?

    I found this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099256/ Don't know if it's helpful but thought it might be.
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