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  1. Daisymay

    New Video ME/CFS Scandal Explainer

    Excellent Adam, thank you very much for all your work.
  2. Daisymay

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Very interesting to hear, thank you. Could this gene relate to small fibre neuropathy does anyone know?
  3. Daisymay

    DecodeME Initial Results Webinar, Thurs Aug 14th, 3:30pm

    Thanks you very much indeed Andy for all your work and care over these years on DecodeME x
  4. Daisymay

    Keystone symposium Long COVID and Other Post-Acute Infection Syndromes August 10-13 2025

    In the nineties there was a Royal College report on food allergies/ intolerances in children and they concluded that in children the reactions were physical but not in adults, so the children the day before their 18th birthday, their allergy/intolerance was physical then the next day it was all...
  5. Daisymay

    UK Government ME/CFS Delivery Plan consultation

    Could the delay be due to more interference from the Royal Colleges again, on behalf of the BPS brigade?
  6. Daisymay

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    Carson said: "Studies of depression show similar results; although one would hope without using similar stigmatising and derogatory language. See for example https://www.nature.com/articles/s41380-025-02919-z." In my ignorance, when I looked at the Nature paper he mentions, the results don't...
  7. Daisymay

    What are the top replicated ME/CFS findings?

    As well as EBV as common trigger infection, also enteroviruses, certainly in the past they often came up.
  8. Daisymay

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

    Sending gentle hugs to everyone having to deal with sickness benefits, it is so very stressful and you feel so vulnerable. Thank goodness I get my OAP now but I remember so vividly the multiple times over the decades my husband and I had to go through the process and it's not fun. I feel for you...
  9. Daisymay

    New Video ME/CFS Scandal Explainer

    Thanks so much Adam, this is really excellent, must have been a heck of a lot of work, thanks x
  10. Daisymay

    Maeve Boothby O'Neill - articles about her life, death and inquest

    It needs to be pointed out to people that the NICE review of BPS research for the 2021 guidelines found 89% very poor quality and 11% poor quality and they rejected it all. So there is no valid evidence base for BPS view of ME. Jonathan how do your colleagues who you mentioned earlier respond...
  11. Daisymay

    Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

    Rights and pledges covering involvement in your healthcare and the NHS Right: ‘You have the right to be involved in planning and making decisions about your health and care with your care provider or providers, including your end of life care, and to be given information and support to enable...
  12. Daisymay

    Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

    Right: ‘You have the right to be treated with dignity and respect, in accordance with your human rights.’ The right to dignity includes a right not to be subjected to inhuman or degrading treatment. The right to respect includes the right to respect for private and family life. This right has...
  13. Daisymay

    Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

    Rights and pledges covering nationally approved treatments, drugs and programmes Right: ‘You have the right to drugs and treatments that have been recommended by NICE for use in the NHS, if your doctor says they are clinically appropriate for you.’ Source of the right Regulations 7 and 8 of...
  14. Daisymay

    Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

    Right: ‘You have the right to receive suitable and nutritious food and hydration to sustain good health and wellbeing.’ Where you are provided with accommodation or an overnight stay as part of your care or treatment, or where you receive nutrition and hydration as part of your care and...
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