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  1. Arnie Pye

    Bridget Mildon - patient advocate for Functional Neurological Disorders

    My bold... The problem with the "medically unexplained" label is that this is also considered to be a description of a condition or symptom which is psychogenic, psychosomatic, conversion disorder, functional, hypochondriasis, Bodily Distress Disorder, attention-seeking, drug-seeking etc...
  2. Arnie Pye

    ..investigation of nutritional intake & supplement use in Australians with [ME/CFS] .. implications on health-related QOL, 2021, Weigel et al

    I find it strange that the abstract specifically mentions fats and carbohydrates in the results section : Daily total fats and caffeine intakes were significantly higher among ME/CFS patients when compared with the Australian population (P = 0.009 and P = 0.033, respectively), whereas daily...
  3. Arnie Pye

    Recall bias in reporting medically unexplained symptoms comes from semantic memory, 2007, Houtveen and Oei

    From the quote in post #1 in this thread... When people report somatic complaints retrospectively, they depend on their memory. Therefore, retrospective reports can be influenced by general beliefs on sickness and health from semantic memory. This is a rather dodgy statement to make for all...
  4. Arnie Pye

    Article and Documentary BBC: Long Covid: Early findings bring hope for diagnostic tests

    From the quote box in post 1 of this thread : But she warned that long Covid was a "complex condition", saying it was important to continue to research the other causal factors so all different types of post-Covid syndrome could be diagnosed and treated. I hate seeing any medical condition...
  5. Arnie Pye

    AMA Journal of Ethics : The Importance of Listening in Treating Invisible Illness and Long-Haul COVID-19

    I wonder if MS has blocked the AMA Journal of Ethics? Or Dorothy Wall (someone I've never heard of)?
  6. Arnie Pye

    Trisha Greenhalgh on ME/CFS and Long Covid

    I suspect she reduced her "exposure" as a result of getting rid of lots of followers who posted about or had an interest in ME/CFS. Since she cropped up here yesterday I went and looked her up last night. Since I don't have a Twitter account I can't be blocked from reading her public posts. She...
  7. Arnie Pye

    USA 2021: Zero premium healthcare available for qualifying Americans...

    ...for the remainder of 2021 Qualifying Americans are apparently those who have received unemployment benefits this year. I have no idea how many people this might affect on the forum, and I hope it isn't considered to be too political - but I thought getting healthcare with zero premium for...
  8. Arnie Pye

    Whitney Dafoe Updates

    I can see public Twitter posts, and I can get a link which allows me to see Instagram posts on a new tab, but facebook links just don't exist for me on this forum - they just show a blank post. But I could see your facebook link when I opened it on another tab, thank you.
  9. Arnie Pye

    Whitney Dafoe Updates

    I can't see any pictures or links on your post, @Jaybee00 .
  10. Arnie Pye

    Making sense of symptoms, clinicians & systems: a qualitative evaluation of a facilitated support group for patients with [MUS], 2021, Marcinow et al

    What purpose does this serve? There are already loads of support groups for all sorts of conditions available on the web - although I must admit that I've never looked for one for MUS, and am not sure how such a group would work. I'd love to know what a facilitator for such a group would...
  11. Arnie Pye

    BPS attempts at psychologizing Long Covid

    When my iron and ferritin levels are low I develop anxiety (and sometimes breathlessness, and sometimes hyperventilation) and can start to panic on occasion. Strangely enough (mild sarcasm) I've found that actually improving my iron/ferritin levels works a lot better at fixing these problems...
  12. Arnie Pye

    BPS attempts at psychologizing Long Covid

    From the above link : The only people and organisations I've heard of mentioning mental health consequences of Long Covid are from the likes of Garner, the NHS, the media, ... I haven't come across patients saying that they suffer from mental health problems with Long Covid other than...
  13. Arnie Pye

    BMJ: Rapid response to 'Updated NICE guidance on CFS', 2021, Jason Busse et al, Co-chair and members of the GRADE working group

    A rather tongue-in-cheek reply to this... If you want to get a flavour of how UK government works you could watch Yes Minister and Yes Prime Minster - well worth the effort even if rather outdated now.
  14. Arnie Pye

    Influence of Priming on Patient-Reported Outcome Measures: A Randomized Controlled Trial, 2016, Claessen et al.

    I can't see the full paper, but I get the impression from the stuff in post #1 that the researchers believe they have achieved wonderful results with positive priming. And no, I don't think they are even slightly concerned about what they are doing. They appear to think that influencing scoring...
  15. Arnie Pye

    What can neuroimmunology teach us about the symptoms of long-COVID?, 2021, Mondelli and Pariante

    First of all the illness at the centre of the pandemic was known as Coronavirus. Then it got renamed to Covid-19. Then it started being referred to as Sars-Cov-2. And even this paper is not consistent. In the title it refers to Long-Covid, but then in the abstract it refers to Long-Coronavirus...
  16. Arnie Pye

    Parent-child discrepancies in health-related quality of life of children and adolescents with [ME/CFS], 2021, Ekberg, Torres and Jason

    As a child of parents who had a horror of what they thought was attention-seeking, I was lucky that "normal" childhood diseases (e.g. mumps, measles, rubella, chicken pox, tonsillitis are the ones I remember) in my youth involved swelling or spots or a high temperature that were easily seen or...
  17. Arnie Pye

    Article series in Guardian, June 2021: The pain that can't be seen. (chronic pain, Long Covid, ME/CFS)

    From the same series of articles - the pain that can't be seen - in the Guardian : I suffer from three chronic conditions. The worst part is knowing my pain could have been prevented The three chronic conditions referred to are endometriosis, painful bladder syndrome / interstitial cystitis...
  18. Arnie Pye

    Quality of life in functional movement disorders is as altered as in organic movement disorders, Gendre et al., 2018

    "Quality of life in functional movement disorders is as altered as in organic movement disorders, Gendre et al., 2018" I look at sentences/titles like this and feel very frustrated. Doctors have been dismissing pain and associated, hard to find or expensive to look for, health problems for so...
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