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  1. 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...
  2. 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...
  3. 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...
  4. 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.
  5. 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...
  6. 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...
  7. 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.
  8. 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...
  9. 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/
  10. 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.
  11. 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/...
  12. 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.
  13. Simbindi

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

    I wonder how stressful GPs are going to find their consultations with patients talking about the need to drink heavily (to dull the senses), discussing starting on illegal drugs (for effective pain relief), threatening the use of self-harming coping mechanisms (an effective pain distraction) or...
  14. Simbindi

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

    When they create these guidelines, do they not consider the serious risk that patients denied proper medical help will end up self-medicating with drink and illegal drugs. I find myself thinking that this may be the way to go, never having taken this approach before...
  15. Simbindi

    DecodeME - UK ME/CFS DNA study underway

    It would be great to have a template letter patients could send to their GP practice. There are notice boards up at the surgery for A4 posters. Additionally, given the Covid-19 problems, I would be happy to ask them to put it in their electronic news letter when the research is in the...
  16. Simbindi

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

    As mentioned in an earlier post I have had one delivery from Waitrose. I just got an email today stating they are offering me priority access as below: So they picked me up without me asking them to give me priority access. That said, there doesn't seem to be many more slots than when I was...
  17. Simbindi

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

    I've just discovered this company which produces organic artisan pasta which actually has nutritional value. So I've put in a £30 order (for the free shipping) and that will be enough pasta for my 'store cupboard' in the event online shopping becomes difficult during the winter...
  18. Simbindi

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

    I've just put in an order from this organically certified company, which I've just discovered. Hopefully this will make my organic veg a little more interesting: https://www.westcountryspice.com/ I think this must be where Riverford obtains a lot of the spices/relishes/sauces they use in their...
  19. Simbindi

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

    I did buy a box of 13 bars of Maya Gold off Ebay back in March, they weren't any cheaper than in the supermarket but neither Tesco nor Sainsburys were stocking this flavour. I like to use this to make a chocolate fudge for the flourless chocolate-almond cake I still haven't made for my...
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