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  1. Cheesus

    Suppressed immune and metabolic responses to intestinal damage-associated microbial translocation in [ME/CFS], 2023, Uhde, Vernon et al.

    I don't think it's fair to call it a myth - there is definitely such a thing as increased gut permeability and microbial translocation. It's just not certain if or how that influences health.
  2. Cheesus

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

    They've changed the headline but still refer to it as "chronic fatigue" several times in the body of the article.
  3. Cheesus

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

    I've already written to the Guardian to ask them to at least get the name right. I've never heard of a condition called "chronic fatigue".
  4. Cheesus

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

    Merged The Guardian: Chronic fatigue guidance discouraging exercise is flawed, say researchers New guidance for doctors discouraging them from recommending exercise and cognitive behavioural therapy for chronic fatigue patients is not evidence based, according to researchers. A study questions...
  5. Cheesus

    Causal Effects between Gut Microbiome and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Two-Sample Mendelian Randomization Study, 2023,Gang He

    Can't believe what I am reading here. I posted this thread way back in 2016 on Phoenix Rising: Paraprevotella: the cause of my atypical ME? In the opening comment of that thread I mentioned that I was hoping to get an FMT from the Taymount clinic, but was too sick to travel for it. I am finally...
  6. Cheesus

    ‘Welcome to my world’: a thematic analysis of the lived experiences of people with [ME] during the UK COVID-19 lockdown, 2023, Portch et al

    I took part in this study and I see one of my quotes made it into the paper! Pleased to see it finally published.
  7. Cheesus

    Brainstem volume changes in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID patients (Thapaliya et al, 2023)

    When I am in PEM I often wake up gasping for air as if I had stopped breathing during my sleep. I did a sleep apnea test but found nothing.
  8. Cheesus

    Genetic Risk Factors for ME/CFS Identified using Combinatorial Analysis, 2022, Das et al

    Might this depend on how well defined the cohort is? If we're dealing with several related yet discrete diseases, or if some subset is misdiagnosed (which is entirely plausible given the weak diagnostic process), you might see an association lower than 100%.
  9. Cheesus

    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    His successor won't be any better in that regard. I guarantee it.
  10. Cheesus

    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    I don't want to give anyone nightmares, but if Johnson doesn't go straight away we might end up with Nadine Dorries as health sec.
  11. Cheesus

    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    Javid has just resigned. Literally anyone else in government and I would have been delighted, but I am devastated.
  12. Cheesus

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    Sometimes progress feels glacial, but looking back, I think it's safe to say that we've made major progress as a community over the past decade, and in the past 5 years in particular. The fight is not yet over, but the old paradigm is in an irreversible decline. May we soon have something more...
  13. Cheesus

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    This happened yesterday. Do we have any news? I can't find anything.
  14. Cheesus

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    I wish I hadn't read that article. My expectations are now sky high and I'm desperately trying to quash my hope because I cannot face the emotional devastation of this being a nothing burger.
  15. Cheesus

    Should PwME be medically treated as 'high-risk' Covid patients?

    I finally asked my GP about this. He said it would not be possible and that he could not even ask a consultant at the hospital to prescribe it. There is no discretion at all. Either we make it onto the list or there is no possibility of getting it. I asked him this when he came to visit me...
  16. Cheesus

    Should PwME be medically treated as 'high-risk' Covid patients?

    I have been thinking about this for the past few days too. I plan to ask my GP about it when next we speak. He got me the vaccine pretty early (without even being prompted!) so I am optimistic that he might be willing to prescribe me paxlovid too if it's within his power. Check appendix A of...
  17. Cheesus

    Well-known, famous people with Covid-19 and Long Covid

    I genuinely thought he was going to topple off the podium. He did NOT look good. I hope he can bounce back because he looked a bit wobbly at the end of Silverstone too. When he got sick at the end of last year I feared it would end his career. He had not really recovered by the time he raced in...
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