Search results

  1. Simbindi

    Measuring the severity of ME

    You have to remember what is 'clear' to you won't necessarily be clear to another person. Which is why I have suggested you use tems that have an established meaning in law (for example the ESA and PIP criteria and the term 'reliably'). At least then a professional would have no excuse or room...
  2. Simbindi

    Measuring the severity of ME

    That concept would need to be refined as it is still too subjective and can mean different things to different people. Any scale should be able to be answered by those with cognitive impairments and neurological differences (such as those with autism who require things to be stated in clear...
  3. Simbindi

    Measuring the severity of ME

    I cannot use a shower due to sensory issues as I cannot tolerate the feel of the water spraying on my skin. I wash myself by bathing. Therefore it seems better to ask people whether they are able to wash themselves, rather than assuming they can shower. The PIP criteria split washing into upper...
  4. Simbindi

    Measuring the severity of ME

    Some activities, like physically shopping, require both physical and cognitive functioning. Other activities, like placing an online supermarket order could be more reasonably conceived as 'cognitive', although it would still require the person to be able to use a computer or smart phone and...
  5. Simbindi

    Measuring the severity of ME

    But what if doing one thing off the list means you can't do the other things? It still has the problem of being completely subjective as the person cannot know if they can do the activity unless they actually try to do it, their answer would be a 'best guess' hypothetical one if based on...
  6. Simbindi

    Measuring the severity of ME

    Other suggestions for the list: Can you tolerate a light being on in your room? For one minute, 30 minutes, an hour etc.? Can you tolerate the sound of voices in your room/outside? For one minute, 30 minutes etc.? Can you tolerate the sound of traffic outside your room? Other normal noises etc...
  7. Simbindi

    Measuring the severity of ME

    The other issue is that I never know if I can complete an activity until I actually start it as I can never assess my own functional ability, which fluctuates even minute to minute, as well as hour to hour and day to day. Starting activities are also very problematic for me, but that may be...
  8. Simbindi

    Measuring the severity of ME

    I think the list needs to cover more severe disabilities. Even the ESA and PIP mobility looks at things like can you stand and transfer from one seat to one next to it. Walk less than a metre, between one metre and 20 (for PIP), mobilise using aids (such as a manual wheelchair) less than 50...
  9. Simbindi

    Measuring the severity of ME

    The problem with just asking if you can or can't do a particular function still has the issue of not being able to capture the true disability of a fluctuating condition, so I don't see how this type of 'black and white' approach can work for PWME. People will still interpret the question in...
  10. Simbindi

    UK - Resources for help getting food during quarantine and other supermarket related problems

    They stopped charging for the pass when it was difficult to get slots, so overall I saved quite a lot of money whilst still having the full flexibility! I prefer Sainsburys, but in my area the choice of products for delivery is substantially less than offered in the local store. I have found...
  11. Simbindi

    UK - Resources for help getting food during quarantine and other supermarket related problems

    Only if you live within 5 miles of the store, at least in my area.
  12. Simbindi

    UK - Resources for help getting food during quarantine and other supermarket related problems

    I'm really glad I switched my Tesco saver plan over to a mid week one (£3.99 per month) just before they made this change. It still seems to be valid for existing saver customers but I suspect people can no longer make the switch. I've had 2 Waitrose deliveries but have been less than impressed...
  13. Simbindi

    Organic vegetable powder (pref. UK), anyone?

    If concerned about the amount of pesticide residue on veg and fruit, it is worth understanding some are 'cleaner' than others. See for example: http://www.paleominds.co.uk/fruits-and-vegetables-you-must-buy-organic-the-clean-fifteen-dirty-dozen/ So if I were buying spinach or kale powder, I...
  14. Simbindi

    Organic vegetable powder (pref. UK), anyone?

    This is the USA organic certification scheme: https://www.usda.gov/media/blog/2012/03/22/organic-101-what-usda-organic-label-means#:~:text=Produce%20can%20be%20called%20organic,most%20synthetic%20fertilizers%20and%20pesticides.
  15. Simbindi

    Organic vegetable powder (pref. UK), anyone?

    Regarding organic certification of non UK/EU organic food products. If it helps your evaluation of various organic products that may have been grown abroad, any company that wants to import organic products from countries other than the EU or the list of countries that are considered to have...
  16. Simbindi

    Organic vegetable powder (pref. UK), anyone?

    I think there are differences even within the various organic certification schemes around the world. See for example: https://www.soilassociation.org/certification/food-drink/what-is-organic-certification/
  17. Simbindi

    Organic vegetable powder (pref. UK), anyone?

    We have to pay horrendous import charges for any product bought outside of the EU, plus the cost of shipping from the USA is also very high for the UK.
  18. Simbindi

    Organic vegetable powder (pref. UK), anyone?

    This company offers 'Soil Association Organic' certified products. Apparently (according to Riverford) this is the highest organic certification given in the UK: https://www.forestwholefoods.co.uk/product-category/superfoods/fruit-powders/...
  19. Simbindi

    New draft NICE guidelines for chronic pain emphasises exercise, CBT and acupuncture over medication

    Another (economic) impact on society will be a likely increase in sick days.
Back
Top Bottom