Search results

  1. E

    Why so little focus on Functional Disability and so much focus on “Symptoms”?

    I'm not too sure on that. Those drugs are very inexpensive and hardly profitable. And some patients probably often spend a similar amount on supplements, where pharmaceuticals loose out on profit. I think an expensive biologic (like Efgartigimod which also requires regular use) would be much...
  2. E

    Why so little focus on Functional Disability and so much focus on “Symptoms”?

    In reference to ME/CFS that however seems to make little sense to me as there's no drugs to treat anything and as such also no customers. I've never found the "lifetime customers" a strong argument in the general situation, because adressing a root cause could equally produce a lifetime...
  3. E

    A blood-based mRNA signature distinguishes people with Long COVID from recovered individuals, 2024, Missailidis, Annesley+

    Thanks for working on this and in particular thank you for commenting here and by doing so engaging with patients and researchers @DMissa. Thanks for providing some cohort data. Unfortunately, I didn't see anything on comorbidties, was this not examined? Do you know if the cohorts were BMI...
  4. E

    Transcriptional reprogramming primes CD8+ T cells toward exhaustion in Myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Iu, Hanson et al

    Transcriptional reprogramming primes CD8+ T cells toward exhaustion in Myalgic encephalomyelitis/chronic fatigue syndrome Significance Myalgic encephalomyelitis/chronic fatigue syndrome (ME) is a serious disabling chronic illness that lacks FDA-approved therapies. Comprehensive...
  5. E

    Patient-Reported Treatment Outcomes in ME/CFS and Long COVID, 2024, Eckey, Davis, Xiao+

    Precisely, which is why I think there is no need to use this survey for those purposes.
  6. E

    Patient-Reported Treatment Outcomes in ME/CFS and Long COVID, 2024, Eckey, Davis, Xiao+

    I wouldn't be too sure about that. From what I understand the survey was largely shared amongst "Twitter friends" so presumably people who often have a similar opinion as you and I think quite a few in that sphere would have known about the history of ME/CFS and GET. Since quite a few countries...
  7. E

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

    Interesting, that one can do that in a systematic review, i.e. use a system such as GRADE, but then also move outside of said system and judge certain studies according to your own criteria without specifying what these criteria even are, since "plausibility assessment" wouldn't seem to be part...
  8. E

    SARS-CoV-2 Spike Protein Accumulation in the Skull-Meninges-Brain Axis: Potential Implications for Long-Term Neurological Complications

    Now published as Persistence of spike protein at the skull-meninges-brain axis may contribute to the neurological sequelae of COVID-19.
  9. E

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

    A bit like saying: The only thing that can treat Alzheimers is moonstones. The conclusion was made on subjective outcome measures. In fact when assessing patients post moonstone therapy to examine whether they had Alzheimers after treatment most couldn't remember that they did, suggesting a high...
  10. E

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

    Haven't looked at it yet, but from what I recall there have been at least 2 HBOT RCTs by the same group on LC. Will have to look into why one was included and the other excluded.
  11. E

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

    I'm also curious how they rated the synbiotic study (thread here) as lower quality of evidence. Not that I believe it has any value in the treatment of LC (the authors didn't report any meaningful data and the LC classifications were nonsense), but it was at least a double blind placebo...
  12. E

    Why so little focus on Functional Disability and so much focus on “Symptoms”?

    I was trying to say that, that in itself would still be a theory, because you'll unfortunately never be able to prove that it was in fact cumin that had that effect. A member of the international association for scuba-diving enthusiasts might argue that it was in fact entirely psychological...
  13. E

    'You'll know you're getting better when you start getting colds & flu again' - anyone else come across this?

    But does a subgroup even exist? I used to know people without any medical condition that hadn't been ill for over 10 years and others that were sick every second month. For a subgroup of ME/CFS patients to even exist you'd have to show that the percentage of these people is higher than in the...
  14. E

    High prevalence of LC in anti-TPO positive euthyroid individuals with strongly elevated SARS-CoV-2-specific T cell responses (...), 2024, Matula et al

    If these differences would be representative of LC, other studies would have already picked them up. So why do they appear here? Is this an issue for a subcohort and they managed to pick out the right cohort? Perhaps a cohort with autoimmune disorders, since the authors don't seem to report the...
  15. E

    What changes the minds of health professionals who hold a BPS view of ME/CFS?

    I know a prominent LC researcher changed their opinion on ME/CFS on the basis of their own research results. I think for many other researchers in the LC field that will be rather similar and sometimes these will convice their colleagues of the same. I find that rather problematic, since they...
  16. E

    Have you limited your activity more than you needed to?

    Precisely. My understanding of ME/CFS and PEM is that everybody can reliably produce PEM if they wanted to. They will typically often produce it without wanting to, to be able to do basic activities that make life worthwhile or simply necessary activities to stay alive. What they cannot do is...
  17. E

    Immune stimulation by vaccination e.g. Staphylococcus Toxoid Vaccine, BCG

    I forgot about this one (even though I read about it yesterday), but glancing over what is written it doesn't seem to be one of those trials launched towards the beginning of the pandemic to address acute Covid, but seems rather Long-Covid specific? From what I remember the trials looking at...
  18. E

    Immune stimulation by vaccination e.g. Staphylococcus Toxoid Vaccine, BCG

    In regards to BCG, there were an abundance of different trials on different BCG formulations with tens of thousands of participants to see whether there is an impact on acute Covid (I don't think any had a Long-Covid follow-up). At the beginning of the pandemic there was the speculation that...
  19. E

    Have you limited your activity more than you needed to?

    Do you mean people that haven't pushed themselves beyond some threshold to experience PEM for some time and upon pushing themselves notice that they don't experience PEM at all anymore or people that haven't pushed themselves beyond some threshold and then notice that their threshold is actually...
Back
Top