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  1. JellyBabyKid

    Streaming nose first thing in the morning - allergies? Bug? Some weird ME/CFS thing?

    Is has a name?! I have always had this. Interestingly, my dad and grandad both have/had chronic rhinitis and awful hayfever and sneezing.
  2. JellyBabyKid

    Streaming nose first thing in the morning - allergies? Bug? Some weird ME/CFS thing?

    SAME! it is like semi permanent hayfever, and I get very irritated eyes too. I have had chronic rhinitis for over a decade, but this is new and ANNOYING! I use a saline spray every morning, which helps and sometimes cold water face plunges, which definitely help. I am fortunately enough to...
  3. JellyBabyKid

    Trial Report Comparison of Digitally Delivered Gut-Directed Hypnotherapy Program With an Active Control for Irritable Bowel Syndrome, 2024, Anderson et al

    Thanks. I was really struggling with IBS at the time. I find other mediations far more helpful. These were just...awkward. might have been me..they might work for someone else.
  4. JellyBabyKid

    Trial Report Comparison of Digitally Delivered Gut-Directed Hypnotherapy Program With an Active Control for Irritable Bowel Syndrome, 2024, Anderson et al

    I am somewhat embarrassed to say I have tried Nerva, on the recommendation of a dietitian. It involves lots of education about how your gut works and guided meditations involving images of blocked or fast flowing rivers and imagining them flowing smoothly or being blocked with rocks to slow...
  5. JellyBabyKid

    JK Rowling new book — chronic illness references

    What a brilliant and eloquent review on GoodReads. Thank you for using your limited spoons to speak out.
  6. JellyBabyKid

    UK BACME ME/CFS Guide to Therapy 2025

    It does make me wonder what happens if anyone says "DecodeME results" to them. I am quite sure their hypothesis/model will account for it though, in some gymnastic way. It's weird how these things always seem to, even before the research comes out :unsure:
  7. JellyBabyKid

    bodysymptoms.org: Postlaunch evaluation and update, 2025, Saunders et al

    "Post exertional malaise (PEM) is the name given to the experience of having a dip in energy, and reduced exercise tolerance, in the days following exertion (strainful exercise)". I think they are confusing PEM with DOMS there :unsure: My PEM is frequently confused with "have I got flu" or "...
  8. JellyBabyKid

    The HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE)

    And what power have we patients got to say this is totally unsuitable? If we can coordinate with LC folks that's a lot of voices See: New Booklet: Prevalence of ME/CFS in the UK https://meassociation.org.uk/2025/11/new-booklet-prevalence-of-me-cfs-in-the-uk/
  9. JellyBabyKid

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    Seriously?! Weren't research questions identified as part of the NICE guidelines? Didn't we also have the James Lind priority setting partnership? How are we still in a scoping phase?!
  10. JellyBabyKid

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    My letter arrived the day after the scheme closed last year, and had to get my MPs office to chase it up, so I have already rung the helpline.
  11. JellyBabyKid

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    Same My last submission was 108 pages. I have kept and scanned every piece of evidence for the 17 years I have seen sick. I used Google lens to copy all the questions off the form to a Google document, used voice typing and included a complete copy as my continuation sheets, so it was easier...
  12. JellyBabyKid

    United Kingdom: Action for ME (AfME) news

    Matches the circular motion of government reports Which seem to be based on the idea that; we've been pressured into being seen to be doing something, this is something, it'll do
  13. JellyBabyKid

    Distinguish ADHD symptoms from ME/CFS symptoms?

    I am a 49 year old woman and have finally been diagnosed with ADHD and awaiting an autism assessment and I have had to fight like hell to get here. My ADHD means that my brain is going 110mph pretty much ALL THE TIME and is almost impossible to switch off, I cannot compartmentalise so can't do...
  14. JellyBabyKid

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    I am not sure that you should be asking pwME questions about it in that case. This reminded me of the Victoria Wood sketch about the woman carrying out a survey on Hellman's mayonnaise.." of course it's totally bona fide - totally fona bido" I'm always extremely wary of people who say "trust...
  15. JellyBabyKid

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Does any other condition get asked to set goals for their condition? This is such a rehab mindset; if all you have is a hammer, everything looks like a nail My goal is simple; regain full health Doesn't need 3 questionnaires of 90 questions each. I imagine most other patients with most...
  16. JellyBabyKid

    What advocacy use should be made of DecodeME results?

    The irony; Isn't this what a certain person described CBT/GET as; an off ramp for pwME to "save face" in moving away from illness back to their old lives?
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