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  1. Joel
    Post

    Mesalazine/Mesalamine - anti-inflammatories

    Hi Ana, sorry for the delay in my reply. I'm not able to be here much lately. My situation is complicated because of multiple health conditions....
    Post by: Joel, Apr 5, 2022 in forum: Drug and supplement treatments
  2. Joel
    Post

    GERD, acid reflux, heartburn and hiatus hernia

    I have acid problems, mainly due to intollerances. PPIs made my problems worse but maybe can work for you. The idea my gastro said was to take...
    Post by: Joel, Jan 19, 2022 in forum: Gastrointestinal and Urinary
  3. Joel
    Post

    United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

    I’m sure he would much prefer it all to be confidential rather than out there on social media.
    Post by: Joel, Nov 1, 2021 in forum: UK clinics and doctors
  4. Joel
    Post

    NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

    Progress? what did i win?
    Post by: Joel, Oct 30, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  5. Joel
    Post

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Thanks Andy, that’s great.
    Post by: Joel, Oct 30, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  6. Joel
    Post

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    This guideline is a great victory. Well done everyone who has made it happen. We’ve won the battle but not the war yet, it seems to me. The...
    Post by: Joel, Oct 30, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  7. Joel
    Post

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    That's good, I hope, but they might work around that by blaming something else perhaps. sorry I was being lazy, should have stayed in bed today.
    Post by: Joel, Oct 26, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  8. Joel
    Post

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    Beds is one of the clinics which fully embraced PACE and the underlying dogma it was based on. I hope we don't see clinics diagnosing ME patients...
    Post by: Joel, Oct 26, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  9. Joel
    Post

    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    I agree, given we are stuck with (non curative) CBT in the new guideline, what we need is to influence how that is now implemented so that it is...
    Post by: Joel, Oct 26, 2021 in forum: 2020 UK NICE ME/CFS Guideline
  10. Joel
    Post

    Mattress toppers that don't make you too hot?

    I totally understand. I haven’t tried one of those but I suspect they must be pretty comfortable. Hope it works well for you.
    Post by: Joel, Oct 15, 2021 in forum: Home adaptations, mobility and personal care
  11. Joel
    Post

    Mattress toppers that don't make you too hot?

    The latex topper I have came with a substantial cover which protects it and that unzips and is washable. As you point out there’s no way you could...
    Post by: Joel, Oct 15, 2021 in forum: Home adaptations, mobility and personal care
  12. Joel
    Post

    Mattress toppers that don't make you too hot?

    They are super crazy heavy, I will tell you that. Much much heavier than memory foam. I think the delivery guy carried it all up the stairs for...
    Post by: Joel, Oct 15, 2021 in forum: Home adaptations, mobility and personal care
  13. Joel
    Post

    Mattress toppers that don't make you too hot?

    Getting a better mattress did improve my quality of sleep. I was really struggling before, including with overheating from the memory foam...
    Post by: Joel, Oct 13, 2021 in forum: Home adaptations, mobility and personal care
  14. Joel
    Post

    Mattress toppers that don't make you too hot?

    I have a latex mattress and topper, from latexsense. It is good but it does degrade over time. It looses some of its support. I’d recommend...
    Post by: Joel, Oct 13, 2021 in forum: Home adaptations, mobility and personal care
  15. Joel
    Post

    Covid-19 vaccination experiences

    I had AZ vaccine a couple days ago. I had disturbed sleep but otherwise no side effects. I feel more ill today but i think it is PEM rather then...
    Post by: Joel, Mar 29, 2021 in forum: Epidemics (including Covid-19, not Long Covid)
  16. Joel
    Post

    Should I get an air purifier to cope with dust?

    I’m sure you’re right, but as they have become popular more people like me who really can’t breath easily as it is let alone when smoke starts...
    Post by: Joel, Mar 8, 2021 in forum: Home adaptations, mobility and personal care
  17. Joel
    Post

    Should I get an air purifier to cope with dust?

    I have a small one which works really well at cleaning the air. You can tell the air is cleaner just by breathing in that room after a few hours...
    Post by: Joel, Mar 8, 2021 in forum: Home adaptations, mobility and personal care
  18. Joel
    Post

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    It look like this might be a victory (at long last, something to be happy for) but we also need to think how they will read the new guidelines and...
    Post by: Joel, Nov 10, 2020 in forum: 2020 UK NICE ME/CFS Guideline
  19. Joel
    Post

    Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study - 2020 - Rekeland, Mella, Fluge et al

    They are comparing a group of 12 with the alleles with a group of 28 without. The numbers are just much too small to be reliable and meaningful....
    Post by: Joel, May 1, 2020 in forum: ME/CFS research
  20. Joel
    Post

    Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study - 2020 - Rekeland, Mella, Fluge et al

    I’m a little underwhelmed by this. Fatigue measure of 69.5 is not normal still and neither is just 5,589 steps. Can this be called remission?...
    Post by: Joel, May 1, 2020 in forum: ME/CFS research
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