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  1. hotblack

    Can a simple screening test distinguish between ME/CFS sufferers and patients with ME/CFS-like symptoms?, 2025, Habermann-Horstmeier (German)

    When I was first ill I was bey unsure about a diagnosis of ME/CFS partly because while I was struggling generally with ‘energy’ or ‘stamina’ I had a series of what felt like sharp ‘crashes’ rather than what I understood of as PEM. And I didn’t have sleep problems. Things changed but I’ve often...
  2. hotblack

    Medication Use and Symptomology in North American Women with ME/CFS, 2025, Pochakom et al

    Medication Use and Symptomology in North American Women with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, A Pochakom, G Macnevin, RF Madden, AC Moss, JM Martin, S Lalonde-Bester, J Parnell… Background: There are no known curative treatments for myalgic encephalomyelitis/chronic...
  3. hotblack

    Evaluation of T cell dysfunction in Post Acute Infection Syndromes, 2025, McCracken

    Most of the information on their website is formatted more as investor information and press releases. So there isn’t a great deal to go on, but they do seem to be working with the NHS to trial their ‘platform’...
  4. hotblack

    A Thought Experiment on Muscles

    Really interesting data. I’ve always seen the brain and heart as high energy so it’s sort of made sense I have problems with them. But now I’m also less sure. I wonder then if it’s related less to the amount of energy used and more how it is used, perhaps focus or context switching? So again...
  5. hotblack

    Clock changes disturbing sleep in ME/CFS

    Not with the normal cycle or shift no. I do have trouble in the summer, some of which is the impact of the earlier morning sun but also the warmer weather, both of which negatively effect sleep.
  6. hotblack

    A Thought Experiment on Muscles

    I’m not sure there’s much more I can add. Yes and no. Sometimes it’s the case, sometimes not. Therefore to me there is no clear cause and effect as you seem to experience. I used to spend a lot of time tracking and trying to understand this and gave up because there was nothing 100%. Maybe...
  7. hotblack

    A Thought Experiment on Muscles

    I often find it interesting hearing how similar some of the descriptions of impacts are (qualitatively if not quantitatively) for people doing things like running or swimming are, to how I would describe impacts from say holding my arms up to trim my hair or trying to walk up a few stairs or...
  8. hotblack

    A Thought Experiment on Muscles

    I have absolutely the same. But I’ve never measured it :) I find coordination can be another good signal, but I don’t know of a way to measure that… maybe a dartboard! I may have similar. There are certainly times when a trivial activity can cause what feels maybe like what you describe in...
  9. hotblack

    A Thought Experiment on Muscles

    To elaborate on an earlier comment. Some questions I have had for a little while, in an individual Does maximum hand grip strength vary over time with symptoms How long do you need to wait between subsequent single grips to not see the drop off in grip strength seen in multiple grips After a...
  10. hotblack

    A Thought Experiment on Muscles

    The only studies I’m aware of on repeated hand grip strength are all in one go, not on subsequent days. They show both lower maximal grip strength but also lower on subsequent tests which is associated with severity. I’d really like some sort of longitudinal study so we can get a better idea of...
  11. hotblack

    UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

    I did have some hope for this plan, have tried raising it with my MP, etc. But it’s not looking positive is it. To be honest I wouldn’t mind if they closed all the specialist clinics. They’re a waste of time in my experience and used as somewhere to shuffle people off to, part of the...
  12. hotblack

    Review A research perspective on sphingolipid metabolism and myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Xiao, Junhua

    Thank you both! It’s really useful to have this insight and pointers to more information.
  13. hotblack

    Review Advocating the role of trained immunity in the pathogenesis of ME/CFS; a mini review, 2025, Humer et al

    I seem to have accidentally triggered a philosophical discussion! @EndME put it well though I think and overall I support their view. Does someone who is mild have ME/CFS if they’re having a good day and functioning near normal? Do people in a sort of remission, even if temporary have ME/CFS...
  14. hotblack

    Review A research perspective on sphingolipid metabolism and myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Xiao, Junhua

    The basis for this paper seems to be the paper in this thread Metabolic features of chronic fatigue syndrome, 2016, Naviaux et al I do remember lipids more generally cropping up in a couple of other papers though so maybe there’s something here? Replicated blood-based biomarkers for Myalgic...
  15. hotblack

    Clock changes disturbing sleep in ME/CFS

    Same. It always messes me up, never used to.
  16. hotblack

    PKM2 accelerated the progression of [CFS] via promoting the H4K12la/ NF-κB induced neuroinflammation and mitochondrial damage 2025 Feng et al

    So there are four groups control group model group with no genetic changes NC (Model) model group with the PK2 gene knocked down/with reduced expression (Model + PKM2-KD) model group with the PK2 gene over expressed (Model + PKM2-OE) The title and hypothesis is “PKM2 accelerated the...
  17. hotblack

    PKM2 accelerated the progression of [CFS] via promoting the H4K12la/ NF-κB induced neuroinflammation and mitochondrial damage 2025 Feng et al

    There may be a contradictory findings or wording in the paper. Something which was flagged in one of my LLM generated summaries I listen to and I think can be seen in the abstract. I need to check the paper to confirm though and can’t quite get my head around it atm but… Here’s some quotes from...
  18. hotblack

    PKM2 accelerated the progression of [CFS] via promoting the H4K12la/ NF-κB induced neuroinflammation and mitochondrial damage 2025 Feng et al

    CFS is persistent fatigue so inducing persistent fatigue is CFS is a sort of logic I guess? They do seem to have invented a new way of torturing mice anyway. While I’m very wary of their definitions of this being CFS let alone ME/CFS, trying to understand induced fatigue seems a fair enough...
  19. hotblack

    What does "tired but wired" mean to you, when does it happen and what do you do to feel better?

    I feel like my original explanation downplayed it or only explained the ‘lighter’ forms of it. Because reading others descriptions I also agree with a lot said. Zopiclone, there’s an interesting one that I’d had when younger and suffering from mental health issues and staying awake for days...
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