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  1. Wonko

    Crowdfunding: Trial By Error: Reporting on ME, CFS, ME/CFS, "Medically Unexplained Symptoms," and now Long Covid, April 2022

    $281 - in 18 hours is......achievable, especially as the US is now awake ;)
  2. Wonko

    Unpleasant taste

    Surely it's much more likely that the entire world smells of burnt toast? I used to smell overheated metal, exactly the smell that train sets used to make, presumably iron ions coming off the electrified track - this was common for the first few years after onset. I haven't been on the vicinity...
  3. Wonko

    Crowdfunding: Trial By Error: Reporting on ME, CFS, ME/CFS, "Medically Unexplained Symptoms," and now Long Covid, April 2022

    Assuming the donor wall is accurate yet again I am the only person in my county to donate, and even then, I'm part of the wider county, the wall has a section for my city, which shows no donors. Given how close this is, my end of the month donations will both be made to the other guy, who...
  4. Wonko

    (2022) "Weʼre raising £16,000 to Continue Dr Geraghty's Vital ME/CFS Research"

    It is,IMO, pretty bad, that even with the target being repeatedly dropped, that worldwide we still cannot hit it.
  5. Wonko

    Magnesium

    Something is being absorbed, or leached, at least in my case. Using mg salts in a bath causes me to be edgy, anxious, whatever the word is. Not using them, in the same bath, that doesn't happen. So something is being transfered one way or the other.
  6. Wonko

    Disability : awareness and representation

    It'd be a start if 'they' didn't just destroy any 'accommodations' that aren't in line with 'their' ableist view of the world. When I moved to this area 20 years ago benches abounded on all the main roads, useful for those who need (or desire) to sit down when out. Several years ago they...
  7. Wonko

    Detection of Male Hypogonadism in Patients with Post COVID-19 Condition, 2022, Yamamoto et al

    There is another option; That testosterone and post covid have no connection. Much like elephants, although it's rumoured some exist, are not likely to have a strong connection to cod stocks in the Atlantic (of much more dubious existence).
  8. Wonko

    Studying severe long COVID to understand post-infectious disorders beyond COVID-19, 2022, Brodin, COVID Human Genetic Effort Consortium et al

    Not very impressive is it. They seem to want to rule out everyone who wasn't in intensive care with covid as suffering from LC, they state that they wish to exclude pw psychosomatic complaints, implying they consider psychosomatic complaints to be a real thing. I have no doubt they may be...
  9. Wonko

    Magnesium

    I use a capsule called 'ZMA' - which is a mix of magnesium (citrate I think), zinc and B6. It improves my sleep, in general. I've gone from sleeping 2-4 hours most nights to sleeping 5-6, sometimes longer (one night recently was 13 hours in bed as well as about 3 hours on the sofa). As well as...
  10. Wonko

    Reduced Cell Surface Levels of C-C Chemokine Receptor 5 and Immunosuppression in Long Coronavirus Disease 2019 Syndrome, 2022, Yang et al

    Erm....People whose cells produced a response had more of a that response than those that didn't? The quoted bit seems devoid of meaning.
  11. Wonko

    The new NICE guidelines - do they affect benefits at all?

    As far as I know the DWP uses brown envelopes, but reassessment letters aren't sent by the DWP, they are sent by the assessment organisations, in white envelopes.
  12. Wonko

    Supervised, individualised exercise reduces fatigue and improves strength and quality of life more than unsupervised home exercise.., 2022, Shah et al

    So, if exercise for 60 minutes is better than exercise for 30 minutes, then exercise for 23 hours must really kick fatigue into the long grass.
  13. Wonko

    The new NICE guidelines - do they affect benefits at all?

    My.understanding is that the maximum time between coming up for reassessment on traditional ESA is 3 years by law. This doesn't necessarily mean that someone will be reassessed every 3 years, it means the claim has to be scheduled to be looked at with a view to reassessment at least once every...
  14. Wonko

    Restless legs syndrome

    I.believe my GPs response when I raised RLS was to comment lots of things might cause me to think I had RLS. No tests, discussion, or debate as to why I'd brought it up, just lots of things might make me think I had it. No explanation as to what any of these things might be that caused me to...
  15. Wonko

    Eye movements may be key to chronic fatigue syndrome diagnosis

    I can't help but wonder if this eye movement thing is the reason why I periodically have issues with my varifocals, which even at the best of times have a very narrow area/tunnel that is in focus, and require a fair amount of cognitive effort to see through. At times this is impossible for...
  16. Wonko

    Long Covid in the media and social media 2022

    To me, it looks like marketing to sell an expensive, very expensive, supplement regime, and their numbers do not sound 'honest'.
  17. Wonko

    BPS attempts at psychologizing Long Covid

    Developed an approach? One that has existed for donkeys years, and has been shown to have no evidence supporting it, and a fair bit against, in another post viral condition? But it's all new of course, freshly developed for pwLC, and nothing at all to do with thousands of people not being...
  18. Wonko

    A review of the treatment of functional neurological disorder with intensive short-term dynamic psychotherapy, 2022, Russell et al

    Neuroimaging suggests they have pictures that clearly and without wishful interpretation back up their point of view. So presumably the equivalent of an MRI with a frowny/sad/smiley face clearly visible in the brain. Clearly visible to someone who isn't a psychologist or psychiatrist wanting...
  19. Wonko

    Best chopping tool/food prep gadget?

    The main disadvantage with air fryers, IMO, is that they dry stuff out. By which I mean that a 1.5Kg bag of frozen chips made 3-4 portions in the air fryer, but the same 1.5Kg of the same type of frozen chips makes 6-8 portions, of the same visual size when cooked, in a deep fat fryer. The...
  20. Wonko

    Trial of Long Covid treatment - AXA1125 from Axcella Therapeutics, 2021

    Is it tho? It looks to I like research money is being thrown at what 'they' have decided long covid is, in exactly the same way as research money was spent on what 'they' decided ME was - rather than on what patients are experiencing. So we have all the same 'research' as was used to waste...
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