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  1. obeat

    Cardiac Output–Cerebral Blood Flow Relationship Is Abnormal in Most ME/CFS Patients with a Normal Heart Rate & Blood Pressure ..., 2024, van Campen

    Why not start with a trial to measure blood volume ? Was this ever discussed at the research working group @Jonathan Edwards
  2. obeat

    Cardiac Output–Cerebral Blood Flow Relationship Is Abnormal in Most ME/CFS Patients with a Normal Heart Rate & Blood Pressure ..., 2024, van Campen

    @Caroline Struthers are there any drugs affecting cerebral blood flow that could be tested in your trailblazer trial? Pyridostigmine does not cross the blood brain barrier but rivastigmine does. There was discussion on the Rob Wust paper thread about the possibility of acetylcholinesterase...
  3. obeat

    What research do you want to see? (study ideas)

    I would like to see this study on GDF15 replicated. https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-019-02153-6 Forum thread on the study here: Circulating levels of GDF15 in patients with myalgic encephalomyelitis/chronic fatigue syndrome, 2019, Melvin, Lacerda, Nacul...
  4. obeat

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

    Earlier there was a post by @Jonathan Edwards about intolerance. I wish that we had persevered with SEID for use by healthcare professionals. It would have created a unifying concept of physical intolerance to help with management.
  5. obeat

    Migraine treatments

    Merged thread I have suffered from migraine for 40 years and severe ME for 30 years. I am eligible for a trial of rimegepant as a prophylactic medicine and wonder if anyone else has tried it. Also has anyone tried botulinum toxin?
  6. obeat

    Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al

    Rivastigmine crosses the blood brain barrier unlike pyridostigmine. Could it be of any therapeutic benefit to us? @Jonathan Edwards @SNT Gatchaman
  7. obeat

    Dry eyes, laryngopharyngeal reflux, pepsin

    I think I may have this condition. How are you treating it?
  8. obeat

    Blood–brain barrier disruption and sustained systemic inflammation in individuals with long COVID-associated cognitive impairment, 2024, Greene et al

    The protective action of oestrogens on blood brain barrier https://www.sciencedirect.com/science/article/abs/pii/S0889159115300040
  9. obeat

    UK: Hope programme for Long Covid

    @Lou B Lou Well said.
  10. obeat

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Yet they had the time and resources to investigate the internal complaint WITH MULTIPLE committees. Is it time to make the APPG for ME aware?
  11. obeat

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    And this time it's doctors vs doctors ,not doctors versus militant activists
  12. obeat

    Opinion Lessons from a Neurologist After 25 Years of Functional Neurological Disorder Subspeciality Practice 2023 Stone

    The fundamental problem for ME and the delivery plan is the lack of a career pathway to create specialist consultants.
  13. obeat

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    I'm happy to contact Irish ME trust and ME support NI. Also doctors with ME and this South African one https://mecfssa.org/
  14. obeat

    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome, 2023 Hwang et al

    From David systrom work "muscle biopsy done at Baylor found citrate synthase deficiency in 10/11 patients" How would that fit with these WASf3 findings?
  15. obeat

    Post-exertional Malaise in ME/CFS - Webinar for Health Professionals - Dr Cathy Stephenson

    I wrote to a physio (who treated my mum) about post exertional malaise and included this link. He replied That sounds like a good subject for our next inservice, so will disseminate to our team.
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