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No, this is an neurological thing I can't control and not due to not being able to deal with confrontation (I'm really, really good at that in normal circumstances having worked with kids with behavioural and social difficulties and always been able to handle them, building good relationships)...

I think from this and your other posts my severity level is similar to yours. What I'm interested to learn is whether when continuously pushed by others (such as in a medical environment) do PWME have anything like a full blown autistic meltdown, where they can't stop themselves lashing out at...

Interesting they removed one from my ex-husbands (a male's) breast on the NHS. That was about 25 years ago and definitely only done for cosmetic reasons.

Despite Participant A stating explicitly (in the true manner of a lawyer) that she didn't suffer from fatigue they still lept referring to her illness as a fatigue/energy problem, rather than an illness that makes her feel physically sick!

Did the researchers actually listen to what these patients were describing? Could they not work out that these patients were fed up of being gas-lighted and were responding to the inadequacies of the questionnaire?

The article doesn't discuss the problem of the supermarket only offering a restricted range of items, compared to what is available in store. Maybe it's different in London, but for a lot of other areas this is a big issue. Neither does the article discuss the problem of half your order not...

Unfortunately Cole and Abel don't deliver this far South! Riverford has a much more restricted product line, which is why I decided to start getting my organic milk from Milk and More, who can at least supply me with yogurt, cream, bread and individual fruit and veg items.

Think back to the difficulty getting hand gel and eggs....

Now I am a regular customer of Milk and More, I can order things like bread, juice, organic fruit and veg from them as one off orders. I'm trying to keep options open for the winter.

Yep. I'm gradually trying to build up more organic items in my cupboard, then I will give all the multiple cans of tomatoes, Heinz soup, remaining cheap government issued pasta etc., to the local food bank. I've also started to get a pint of milk 3 times a week from Milk and More (they only...

Ocado priced matched my order and have given me a 1 pence credit towards my next order. Can't wait to treat myself....

In England teachers are not allowed to mark students books (or at least not unless the books have been 'quarantined' for 72 hours minimum, which isn't practical in most cases). So it seems they are erring on the cautious side about this, at least at the present time.

I got my first Ocado order today and was pleased with it. I didn't buy much fresh produce as I have Riverford for this, but what I did order had satisfactory dates. I was impressed that they colour code the plastic bags for freezer, fridge and cupboard! That made it so much easier to pace the...

Just because UK ESA and PIP benefits assess a specific set of (very limited) functional abilities, doesn't mean that this approach is actually the best approach for what they are intended to do. Many people argue that these assessments should be looking at how an individual can manage in the...

With M.E., surely fatigability is a key symptom? So being able to repeat an activity is highly relevant. The same with PEM. Any scale that doesn't address these concepts isn't going to register a meaningful improvement and actually that in itself means it would be easy for a practitioner to...

I'll have to bow out of the conversation for a while as I was reading this thread while having a break from reading PIP case law, to help fill out a friend's PIP health questionnaire! Seeing how hard it is for even judges to understand a person's physical and mental functional limitations made...

I meant a scale that is intended to be filled out every day to see daily and weekly fluctuations and help with pacing, as Trish had implied, would be too individualised for general research purposes.

I am not sure how useful this would be for research purposes as it becomes very individualised. However, this seems like a good idea, to create a list of questions that would make a standardised 'activity diary' template for PWME (from mild to very severe). I can see that would be extremely...

I suggested the PIP 'reliability' criteria, because this is well defined after being put together by a large range of disability groups specifically to capture functioning in fluctuating conditions, including M.E.. So people in the UK are familiar with it (and it has been well tested through...

Yes, it gets complex, doesn't it! I think that is why the ESA and PIP refer to being able to do routine activities and follow known routes first then ask about whether you can do an unfamiliar activity or follow an unfamiliar route. This is very significant. I was able to judge how much my...