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  1. Turtle
    Post

    Pacing up - why it's as harmful and unevidenced as GET

    In the last century I tried my own pacing up/GET, more pwME friendly. My first attempt on a normal bike got me stranded after 400 m on a very...
    Post by: Turtle, Jan 15, 2025 in forum: General ME/CFS discussion
  2. Turtle
    Post

    What do we mean by a diagnosis like ME/CFS?

    In my opinion you are completely right about this. Psychiatry and psychology don't study chronic fatigue syndrome, they just study fatigue. They...
    Post by: Turtle, Jan 14, 2025 in forum: Diagnostic Criteria and Naming Discussions
  3. Turtle
    Post

    Hippocampal subfield volume alterations and associations with severity measures in long COVID and ME/CFS: A 7T MRI study, 2025, Thapaliya, Barnden+

    This could explain why I went from last year uni student to having what I would even call a learning disability.
    Post by: Turtle, Jan 14, 2025 in forum: ME/CFS research
  4. Turtle
    Post

    Factors associated with quality of life in long-COVID syndrome, 2025, Artemiadis et al

    Am I reading this right? Fatigue 7%, distress 11%. And the other "symptom" being female accounts for the rest of 42 %? Can someone help this...
    Post by: Turtle, Jan 9, 2025 in forum: Long Covid research
  5. Turtle
    Post

    Inactivation of ATG13 stimulates chronic demyelinating pathologies in muscle‑serving nerves and spinal cord, 2025, Drosen et al.

    I already use metformin for diabetes II and it does nothing special for me in PEM. My PEM is sore muscles, more fatigue and more brainfog, no flu...
    Post by: Turtle, Jan 7, 2025 in forum: ME/CFS research
  6. Turtle
    Post

    What do we know about oral rehydration or electrolytes for OI in adult PwME?

    Thanks Trish! I think my problem is low blood volume and that's why I keep rehydrating. I thought I drank 2 liters a day, but after remeasuring...
    Post by: Turtle, Jan 3, 2025 in forum: Orthostatic intolerance treatments
  7. Turtle
    Post

    A psychological model of predictive factors of distress following long COVID 2024 Brown et al

    Maybe better not to give a grant to "researchers" that can't even get the name of a disease right. Not CFS/ME, folks, it's called ME/CFS.
    Post by: Turtle, Dec 24, 2024 in forum: Psychosomatic research - ME/CFS and Long Covid
  8. Turtle
    Post

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

    It's the patients asking for a referral. GP's don't know anything about ME/CFS. Even a chronic fatigue "specialist" I met didn't know these...
    Post by: Turtle, Dec 23, 2024 in forum: ME/CFS research
  9. Turtle
    Post

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Thanks for your deep diving into all of those data @forestglip. Could hypoxia be a common factor in all those hypoxanthine findings?
    Post by: Turtle, Dec 22, 2024 in forum: ME/CFS research
  10. Turtle
    Post

    News from The Netherlands

    Looks better than the Lifelines they wanted to use before (Rosmalen). What a pity that I'm too old to participate. 18 - 65 years.
    Post by: Turtle, Dec 17, 2024 in forum: Regional news
  11. Turtle
    Post

    Combining Topic Modeling, Sentiment Analysis, and Corpus Linguistics to Analyze Unstructured Web-Based Patient Experience Data...Modafinil, 2024,Walsh

    Yes. "Existing randomized controlled trials and systematic reviews, which conclude insufficient or low-quality evidence of effectiveness". Last...
    Post by: Turtle, Dec 12, 2024 in forum: ME/CFS research
  12. Turtle
    Post

    Study registration: Amygdala Insula Retraining in the Management of Long COVID Symptoms

    Hot AIR?
    Post by: Turtle, Dec 5, 2024 in forum: Psychosomatic research - ME/CFS and Long Covid
  13. Turtle
    Post

    Cognitive assessment in ME/CFS: a cognitive substudy of the multi-site clinical assessment of ME/CFS (MCAM), 2024, Lange, Unger +

    Prior to my appointment with researchers in The Netherlands I was asked to do a N 2(pictures) back N 3 back test over a 3 week period, on-line, at...
    Post by: Turtle, Dec 5, 2024 in forum: ME/CFS research
  14. Turtle
    Post

    Review Interventions for the management of long covid post-covid condition: living systematic review, 2024, Zeraatkar, Flottorp, Garner, Busse+

    Thanks Nightsong for posting and @dave30th for the excellant blog. BMJ must really like your writings they keep coming back for seconds,...
    Post by: Turtle, Dec 4, 2024 in forum: Psychosomatic research - ME/CFS and Long Covid
  15. Turtle
    Post

    ME/CFS and LC at International Society for Magnetic Resonance in Medicine 2024

    What would your own n=1 answer be to your question?
    Post by: Turtle, Dec 3, 2024 in forum: ME/CFS research
  16. Turtle
    Post

    ME/CFS and LC at International Society for Magnetic Resonance in Medicine 2024

    Could you explain what you mean by more established longer duration non-LC-ME/CFS?
    Post by: Turtle, Dec 2, 2024 in forum: ME/CFS research
  17. Turtle
    Post

    ME/CFS and LC at International Society for Magnetic Resonance in Medicine 2024

    Thanks for the warning. Venous oxygenation caught my attention. I'd love to learn more about that. I do remember though a bold signal turning into...
    Post by: Turtle, Dec 2, 2024 in forum: ME/CFS research
  18. Turtle
    Post

    ME/CFS and LC at International Society for Magnetic Resonance in Medicine 2024

    Who's in a hurry? I've only been waiting for 33 years as are miilions of other patients all over the world. Two years embargo, that hurts.
    Post by: Turtle, Dec 2, 2024 in forum: ME/CFS research
  19. Turtle
    Post

    Review Exercise in Postural Orthostatic Tachycardia Syndrome: Focus on Individualized Exercise Approach 2024 Blitshteyn et al

    Authors with knowledge and common sense, how wonderful.
    Post by: Turtle, Nov 28, 2024 in forum: 'Conditions related to ME/CFS' news and research
  20. Turtle
    Post

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Thanks again. You are a whole lot more persistent than the 70 + NINDS group. Outperforming the researchers!! And I like you're way of thinking...
    Post by: Turtle, Nov 27, 2024 in forum: ME/CFS research
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