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  1. Peter T

    Questionnaires - design, validation and use in ME/CFS research - discussion thread

    It is important to distinguish between a questionnaire as a psychometric tool designed to measure specific psychological traits and a questionnaire designed to elicit information about an individual or a group of people. I suspect in reality such as the Calder scale is the later, misused as the...
  2. Peter T

    Questionnaires - design, validation and use in ME/CFS research - discussion thread

    I wonder if part of the root of this, is the idea that if validated the actual questions in a psychometric tool are irrelevant. The idea that once validated it ceases to be a questionnaire and rather an objective measuring tool. As an undergraduate, some forty years ago, I was taught that once...
  3. Peter T

    Generalised worry in patients with [CFS] following Cognitive Behavioural Therapy - a prospective cohort study in secondary care, 2022, Chalder et al

    This is also a preselected sample, people referred to a specialist service for CBT which could have implications for interpreting the results.
  4. Peter T

    The Times: My Mother, Munchausen’s and Me by Helen Naylor review — the tyrant in the sick bed

    Is it possible that some people with a ‘contested’ illness come to the mistaken belief that they have some form of Munchausen’s when in fact they have a genuine illness? When doctors repeatedly tell someone they have a psychosomatic condition is it possible that an impressionable person comes...
  5. Peter T

    Valerie Eliot Smith charity complaint

    I agree that the MEA’s email sent to Valerie this week is a political non response, and think it is worth copying into this comments thread: [added - Am I reading too much between the lines or could this response be seen as a tacit acceptance of responsibility for the original contentious...
  6. Peter T

    Valerie Eliot Smith charity complaint

    Though I do not agree with Valerie’s positions on all issues, I have found she almost invariably makes an important contribution to the debate and that her Blogs are well worth reading as part of achieving a broad understanding of the issues addressed. Personally I am not sure she is always...
  7. Peter T

    UK parliamentary petition: Fund research into any relationship between microclots and long Covid and ME

    although I signed the petition my thought was that this is a situation where a general petition hosting site petition such as change.org would be more appropriate than a UK Parliamentary petition. As already stated even if this achieves enough signatures to force a response from the UK...
  8. Peter T

    Functional Neurological Disorders - discussion thread

    Do you mean ‘pretty low tolerance’? I often miss out the key word in a sentence.
  9. Peter T

    MElivet - Blog posts by Nina E. Steinkopf

    Doesn’t it have features of both pyramid selling and a cult? It’s structure is that of a pyramid selling scheme and I suspect for some devotees income generation is central but also you read of others displaying cult like behaviour where belief is their motivation.
  10. Peter T

    Association between vaccination status and reported incidence of post-acute COVID-19 symptoms in Israel

    Potentially very reassuring for those of us here in the UK where we have a government that increasingly by relying on herd immunity through vaccination and allowing the disease to spread almost unrestrained had made an enormous gamble about potential levels of Long Covid.
  11. Peter T

    Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis, Bjornevik et al (2022)

    At the start of my ME, which was continuous with a bout of glandular fever/mono (impossible to say where one ended and the other began because of overlap of symptoms) I also tested positive for EBV. This was nearly 30 years ago so it may not be up to date, but I was told that the EBV virus is as...
  12. Peter T

    Article : What’s the Difference Between Chronic Fatigue Syndrome and Fibromyalgia?

    Is the problem that increasingly research is being undertaken on the basis of questionnaires devised to supposedly show the presence of central sensitivity, then claiming that it exists in various conditions on the evidence of these questionnaires without ever attempting any independent...
  13. Peter T

    PaxMedica Plans to Initiate Phase 1B Study for PAX-101 (Suramin) in Patients with Long COVID-19 Syndrome

    Are we seeing a naming problem? Some people use Long Covid to include any long term sequelae including the structural damage arising from the initial infection, and others seem to use it for just the ME type symptoms. I would agree it is too early to make categorical pronouncements on this. It...
  14. Peter T

    Use of Dietary Supplements and Perceived Knowledge among Adults Living with Fibromyalgia in Norway: A Cross-Sectional Study, 2022, Kvael et al

    Norway is in the European Economic Area, so it has to follow most EU rules, but it is not a full member of the EU. Having said that not every country in the European Union uses the €; the UK continued with £ whilst still in the EU, and Denmark continues with the Danish Krone.
  15. Peter T

    Use of Dietary Supplements and Perceived Knowledge among Adults Living with Fibromyalgia in Norway: A Cross-Sectional Study, 2022, Kvael et al

    Not a problem, I think most people on this side of the pond have a rough idea of the relative values of the € or the £ to the $, but for me the NOK is a mystery that requires currency converters.
  16. Peter T

    Use of Dietary Supplements and Perceived Knowledge among Adults Living with Fibromyalgia in Norway: A Cross-Sectional Study, 2022, Kvael et al

    When I was spending a maximum on dietary supplements in a vain attempt to treat my ME, some 25 years ago, I was spending (under the direction of a nutritionalist) some £80 a month, which using the Bank of England inflation calculator is the equivalent of about £160 a month now. So taking this...
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