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  1. Mithriel

    Covid-19 vaccines and vaccinations

    May have missed it, but I am wondering exactly what, say, a 90% efficacy means. Is it 90% of people have immunity but 10% don't? Or does an individual have a 90% chance of not getting sick if they meet the virus?
  2. Mithriel

    Caught up in Care: Crafting Moral Subjects of Chronic Fatigue, Risor and Lillevoll, 2021

    The use of activity timetables just shows how out of touch with the realities of ME these therapists are. I can never predict what I can do on any day or at any time of day. Since lockdown last year I have to make a list for the food we will need for the week so my husband can go shopping on a...
  3. Mithriel

    My Doctor Told Me My Pain Was All in My Head. It Ended Up Saving Me. 2021 Medical examiner article

    People who run these trials and make all these pronouncements have never experienced real pain. They could not have, it is impossible to be so wishy washy about it. I experience a lot of pain with my ME. When they stopped my painkillers I could not think it was so overwhelming. Yet the pain...
  4. Mithriel

    Glutamate transporters have a chloride channel with two hydrophobic gates (2021) Chen et al

    Research like this leaves me not knowing whether to laugh or cry. There is so much still to learn about cellular function, how it works and what can go wrong with it, yet medicine screams about FND and MUS with their patronising dismissal of patients.
  5. Mithriel

    Caught up in Care: Crafting Moral Subjects of Chronic Fatigue, Risor and Lillevoll, 2021

    It seems that nowadays everything has to be said in a simple soundbite. "Make time for Joy", 4 words ideal, yet the practical concept is totally lost by the brevity and it ends up being useless except 4 words fits into a questionnaire. Even after all these years I feel guilty using scarce...
  6. Mithriel

    Article: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Human Herpesviruses Are Back! 2021, Ariza

    I had summer flu which is enteroviral and tested positive for infection a few years later. A lot of viruses have characteristic properties. Since basic research has stopped being a priority in medicine viruses have been neglected. Too many are classed as trivial so not worth bothering about...
  7. Mithriel

    Article: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Human Herpesviruses Are Back! 2021, Ariza

    EBV has too long an incubation to account for the spread in epidemics and many people are too young to have EBV when they get ill. The herpes viruses have been studied in ME for over 30 years. There may be something to learn and they may be important for a lot of people which would be good, but...
  8. Mithriel

    The development of an instrument to assess post-exertional malaise in patients with myalgic encephalomyelitis and CFS (2018) Jason et al.

    Questionnaires should come after observation. Just thinking about it, ask test subjects to do something which raised their heart rate over the average they had over the past 5 days and note how long they had been ill and how they rate their severity. Then, say, a phone app where you put in how...
  9. Mithriel

    The use of the labels ME, CFS, ME/CFS

    While I do not think the name Chronic Fatigue Syndrome has done us any favours at least it is better than Exploding Head Syndrome which sounds like a Monty Python sketch or, even worse, Nutcracker Syndrome which is Do doctors not consider how these names will affect patients? It makes you...
  10. Mithriel

    Gut dysbiosis in severe mental illness and chronic fatigue: a novel trans-diagnostic construct? A systematic review and meta-analysis, Safadi, 2021

    The first time I heard of sickness behaviour was many years ago in the context of why some animals isolate themselves and hide when they get ill. It is a valid area of study but over time it appears to have been hijacked by BPS ideas so rather than a set of instinctive evolutionary responses it...
  11. Mithriel

    When is post viral illness PVFS and when is it ME/CFS? Discussion.

    Ramsay was one of the doctors during the Royal Free Epidemic. Myalgic Encephalomyelitis was based on the symptoms of people who took ill then and did not recover and from similar patients after other epidemics which were thought to be enteroviral. If ME/CFS is a consequence of other viral...
  12. Mithriel

    How to learn skilled communication in primary care MUS consultations: a focus group study, Houwen et al, 2021

    Oh I did not mean the ones attached to diabetic clinics, I am sure they do a good job. I was specifically referring to the IAPT program which is expanding from MUS diagnoses to uncontested diseases and I should have made that clearer. I have family members with mental health problems and I do...
  13. Mithriel

    How to learn skilled communication in primary care MUS consultations: a focus group study, Houwen et al, 2021

    My heart sinks every time I see a demand for more money for mental health patients as it seems to mean more going to treat imaginary mental health problems in people with diabetes and the like while th epoor people with true mental issues have less and less spent on them Unfortunately, they are...
  14. Mithriel

    When is post viral illness PVFS and when is it ME/CFS? Discussion.

    It was all a bit confusion at the time. There may be written records or other people know more than me but when I first joined the ME association in 1984 Dr Ramsay was the patron and he wrote articles, gave talks and still saw patients. We spoke about myalgia and deep burning pain in the legs...
  15. Mithriel

    News from Long Covid Physios

    I know a lot of people with MS and their experience is relevant. The consultant is interested in the big picture and things like major deterioration but mainly gives out drug treatments. The MS nurse helps with everyday life and lesser things. For instance there is a machine that helps empty the...
  16. Mithriel

    When is post viral illness PVFS and when is it ME/CFS? Discussion.

    I am not fighting a battle over names. I am talking about where the name came from and the difference at the time was devastating to those of us who had a multisystem disease that suddenly had a new name and worse still different symptoms. It was like a military coup and was designed to destroy...
  17. Mithriel

    The use of the labels ME, CFS, ME/CFS

    The CDC investigated an epidemic in Incline Village. Experts told them it was another ME epidemic but they ignored that and it was never mentioned in the discussions. They said it was a new disease that was defined as having 6 months of fatigue such that you could only do less than half of what...
  18. Mithriel

    Cognitive Behavioural Therapy for chronic fatigue and CFS: outcomes from a specialist clinic in the UK (2020) Adamson, Wessely, Chalder

    Waiting list controls are a source of bias as not getting any treatment leads to resentment. A control for CBT could be a group with tea, cake and chat as often as the CBT sessions. No one does it anymore, but there should also be a control group getting CBT who have not got ME either another...
  19. Mithriel

    Covid-19 vaccines and vaccinations

    ME should be on the list because many people are bedbound and rely on a series of careers coming in so are at high risk not just because of fatigue. They really don't equate with people with mild asthma. There is asthma in my family and I hope they get vaccinated soon but they have a choice and...
  20. Mithriel

    Post-COVID-19 Symptom Burden: What is Long-COVID and How Should We Manage It?, Sykes et al, 2021

    There is a flaw in their reasoning. Their premise is that psychological distress is expressed by the body as physical symptoms. Then they say that women are more likely to be anxious. But if all these women were expressing their anxiety as physical symptoms then they should not appear more...
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