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  1. Wonko

    Covid-19 vaccines and vaccinations

    The whole 'take up' line strikes me as duplicitous. People who've had the previous 2 shots are unlikely to be 'refusers'. The reason, IMO, take up is low is simply down to the timing restrictions that have been in place, effectively blocking a lot of people from even attempting to book. I...
  2. Wonko

    Covid-19 vaccines and vaccinations

    The time requirement for a booster, in the UK, has dropped down to 5 months (for booking at least). I was not due for consideration (i.e. allowed to book) until the 25th of November but have just been 'approved' and booked an appointment for the 16th of November. The 'good' bit is the place is...
  3. Wonko

    ME/CFS services in the United Kingdom

    Is it just me or does that appear to suggest that they plan on handing/leaving control to the very 'experts' who have been abusing pwME for decades? i.e. not good, really quite not good.
  4. Wonko

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

    I had it (ETA - the PIP assessment report), from the time or the original assessment (2017), and was shocked that, when asked for the reason for the null award, they said they used the same report for my assessment this year, so I asked for all information the DWP held on me. This took around...
  5. Wonko

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

    I have no idea, all of my stuff is from years ago and I got none of it sent or given to me. My medical records that I received recently have lots missing and are not in a helpful format. My DWP records that I received more recently also have lots missing, for instance they do not have anything...
  6. Wonko

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

    In practice that is not how it works. Written diagnosis, by particular people, are all that seems to matter, both at assessment and at tribunal. It should be noted that at no point, ever, has a consultant, or GP handed me a piece of paper saying that I have xxx when they've given me a...
  7. Wonko

    News from Doctors with ME

    All I saw was a small picture of someone I do not recognise. No words, at all, to explain why the picture was there. So I assumed it was art, considered wondering why art was there, and decided against it, as not being any of my business. ETA - yep, still no words.
  8. Wonko

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

    That would suggest that we were supposed to receive care. No point in a care plan if there is no care available. (for the purposes of, well everything, I do not, and did not, consider CBT/GET and related things to be treatments/care or......anything positive)
  9. Wonko

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

    The law says that ESA reassessments must occur at least once every 3 years. The new guidelines do not change the law. The law doesn't care what's wrong with people. Neither does the DWP, or the government. They only care that sick people are ground to dust on the reassessment millstone as...
  10. Wonko

    Using PCs versus laptops when you're mostly in or on your bed

    I use an app called accubattery which can be set to alert (make an annoying noise) when the charge reaches a preset level (I use 90%) which could be used, if the charger was plugged into a remote controlled socket, to tell you when to turn the socket off. I used to do the same thing with a...
  11. Wonko

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

    Those are also seemingly fairly standard components at pretty low dosages. I can't believe that none of us have used them. I probably have, with the exception of glutamine, as far as I remember. Not a wonder drug.
  12. Wonko

    News from Doctors with ME

    It can, and will be, determinedly underestimated, with extreme prejudice to those who say otherwise. Have they not met people before? Have they not been paying attention?
  13. Wonko

    Limbic Perfusion Is Reduced in Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2021, Xia Li et al

    I don't know about RA but this sort of thing seems to have happened to me. I can be in significant pain for a long time, with pain killers right next to me, and not take them, even when I remember that - as moving involves lots of processes that I know won't stop the pain for a long time. So...
  14. Wonko

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

    When I've taken amino acids such as BCAA it's in powder form mixed into a shake, drink, as with capsules I'd be taking than all day. 10 to 15g of powder in 200ml of liquid is not unusual, more if it's a whey based shake mix with something else added, where the whey component is 30g per 200ml of...
  15. Wonko

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    erm...none, or all, in grey, other than the red ones. which isn't to say I couldn;t work it out, just that the identifying characteristic is absent.
  16. Wonko

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    I think that this may be missing the point. They can only be stupid in the eyes of the public if they think that the public consists of people, and not of profit yielding livestock. Most people don't care what livestock thinks, what it's opinion of them is. They only care what their equals...
  17. Wonko

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

    It does seem that fatigue is the medical equivalent of chicken.
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