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  1. butter.
    Post

    Donating and fundraising by people with ME/CFS - discussion thread

    Lack of private funding is the main impediment to change for ME patients. The first thing that must happen to achieve that change is a shift in...
    Post by: butter., Jan 25, 2025 in forum: Fundraising
  2. butter.
    Post

    How can we improve the quality of ME/CFS research and clinical care?

    Hi everyone, I just wanted to say that whatever you’re doing or planning to do to get the information from S4ME out into the “real world,” I’m...
    Post by: butter., Jan 4, 2025 in forum: General ME/CFS discussion
  3. butter.
    Post

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    So, funding is secured? Thank you!
    Post by: butter., Dec 27, 2024 in forum: ME/CFS research news
  4. butter.
    Post

    Review Key Pathophysiological Role of Skeletal Muscle Disturbance in Post COVID and ME/CFS: Accumulated Evidence, Scheibenbogen et al, 2024

    They are looking for funding.
    Post by: butter., Dec 27, 2024 in forum: ME/CFS research
  5. butter.
    Post

    PEM-like descriptions and accounts in non-ME illnesses

    Can you say more about this? Where did you get this info from? I am specifically interested in the 'after resting' bit.
    Post by: butter., Dec 27, 2024 in forum: Post-Exertional malaise and fatigue
  6. butter.
    Post

    TANGO2: A Rare but Important Mutation 2024 Walters et al

    If your urine really is a dark brown (please google it for comparison) then that is essentially always an emergency. If it looks like Cola, you...
    Post by: butter., Dec 27, 2024 in forum: Other health news and research
  7. butter.
    Post

    Should we change our name: 'ME/CFS Skeptic'?

    ME/CFS Review Inform ME(/CFS)
    Post by: butter., Dec 27, 2024 in forum: General ME/CFS news
  8. butter.
    Post

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

    But aren't complement mediated events inflammatory?
    Post by: butter., Dec 27, 2024 in forum: ME/CFS research
  9. butter.
    Post

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

    I am pretty sure this is relevant. On the other hand, I would be somewhat surprised if this is specific to ME/CFS. The degree of dysregulation...
    Post by: butter., Dec 23, 2024 in forum: ME/CFS research
  10. butter.
    Post

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    Thank you, Chris. What is the situation in regards to funding? I am not sure what is the situation post Brexit, but could you apply for EU...
    Post by: butter., Dec 16, 2024 in forum: ME/CFS research news
  11. butter.
    Post

    Blood Glucose and Insulin Resistance

    ME patients can't utilize sugar and fats normally, are we surprised to find 'insuline resistance?' If you eat sugar, and your cells can't utilise...
    Post by: butter., Sep 27, 2024 in forum: Blood (e.g. coagulation, cell stiffness)
  12. butter.
    Post

    ME Hypothesis- Noradrenergic Neuron Dysfunction

    Thank you for your insights. A few follow-up questions came to mind: 1. Are there specific methods or approaches to test your hypothesis? 2. How...
    Post by: butter., Sep 21, 2024 in forum: ME/CFS research news
  13. butter.
    Post

    Bridging Dx Gap for [hEDS] and [HSD]: Evidence of Common Extracellular Matrix Fragment in Plasma Potential Biomarker, 2024, Ritelli et al

    If the results are real, you were wrong about “all that pseudoscience” that led them there, I guess.
    Post by: butter., Sep 16, 2024 in forum: Other health news and research
  14. butter.
    Post

    Inhibition of IL-11 signalling extends mammalian healthspan and lifespan. (Widjaja, Cook, et al 2024)

    Absolutely, the CF community fundraised billions of dollars privately to get there. There are no miracles.
    Post by: butter., Jul 22, 2024 in forum: Other health news and research
  15. butter.
    Post

    “Adrenaline Rush” phenomenon— What helps?

    I think you talked about ‘very delayed PEM’ before, but can’t find it, what is that to you? Thank you!
    Post by: butter., Jul 20, 2024 in forum: Drug and supplement treatments
  16. butter.
    Post

    Trial Report Plasma Neurofilament Light Chain: A Potential Biomarker for Neurological Dysfunction in ME/CFS, 2024, Azcue et al

    I hope there will be a follow up that controls for PEM and/or time of onset and/or time since latest relapse etc. in some way. I have argued with...
    Post by: butter., Jul 11, 2024 in forum: ME/CFS research
  17. butter.
    Post

    Multimodal Molecular Imaging Reveals Tissue-Based T Cell Activation and Viral RNA Persistence for Up to Two Years Following COVID-19, 2023, Peluso +

    I haven't read the paper only the summary. T-cells in the spinal cord and brainstem = ME. Just saying. If this turns out to be true and the...
    Post by: butter., Jul 4, 2024 in forum: Long Covid research
  18. butter.
    Post

    Speculations about the genetics of ME/CFS and DecodeME

    It's not about 'patient vs non patient researchers' though, Snowy, it's about 'knowing vs not knowing' and 'having the energy to implement that...
    Post by: butter., Jul 3, 2024 in forum: Laboratory and genetic testing, medical imaging
  19. butter.
    Post

    Speculations about the genetics of ME/CFS and DecodeME

    Well, that's a very unqualified statement, but, it's not very surprising, I have to say. Where would I get 100 MIL (you came up with that figure)...
    Post by: butter., Jul 3, 2024 in forum: Laboratory and genetic testing, medical imaging
  20. butter.
    Post

    Speculations about the genetics of ME/CFS and DecodeME

    Of course.
    Post by: butter., Jul 3, 2024 in forum: Laboratory and genetic testing, medical imaging
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