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Also relevant if you are deemed extremely clinically vulnerable and depend on a Personal Assistant/Unpaid carer/partner or family member for your care: https://www.disabilitynewsservice.com/peer-calls-for-disabled-people-to-take-control-over-pa-vaccinations/

Carers added to Group 6 (England) for priority vaccination: https://www.justintomlinson.com/news/article/unpaid-carers-included-priorty-list-covid-vaccine

So they're using the (subjective) PHQ 15 as the primary outcome measure! https://reference.medscape.com/calculator/460/patient-health-questionnaire-15-phq-15#about-references https://reference.medscape.com/calculator/460/patient-health-questionnaire-15-phq-15

The researchers presumably thought that using a facilitator who 'knew nothing about ME' would lead to more 'accurate', 'clean' and/or 'objective' data. This is a perfect example of how researchers assumptions can be dangerously wrong when they design their methodologies - you don't get 'cleaner'...

To be quite frank, the assumption that a researcher can eliminate bias by assuming that the respondent is generating the bias by their approach to answering the questionnaire (and therefore forcing respondents to answer questions in a predefined way), is one of the things that puts me off...

I gave up on the Action for ME NICE guideline survey for the reasons given by @lunarainbows . It also felt like they were 'putting words into my mouth', I didn't like that at all.

I also don't answer any survey if I can't read through the whole thing before starting it. Most of my autistic peers are the same in this regard. It's not just the cognitive fatigue, it's the stress of not knowing what to expect as the questions proceed.

As an autistic person I find questionnaires really difficult and stressful, I end up in knots as none of the response options provided ever fit my thoughts on the issue. Also I can't just pick an answer and then forget about it, the fact I've not given a precise answer will take over my thoughts...

Yes, my choice is based on the fact that I live alone and am shielding anyway. I haven't been able to drive for the last year and now with cataracts and the problem with vision loss in my left eye (possible optic neuritis), I suspect it will be at least 6 months (if ever) before my sight will be...

Forum members have really helped both clarify my understanding of, and also have given me the language to be able to much better describe and articulate, my symptoms.

I'm going to take the same approach, although I think my GP would probably offer me the Oxford vaccine via a home visit. The whole 12 weeks between jabs thing being unevidenced stresses me out, plus the fact that the Oxford vaccine may turn out to have a low efficacy too. I much prefer to wait...

I also get severe problems with my eyes in PEM, which has been the case since I first got ME 28 years ago. It feels like my tears are acidic (or very alkaline?) and I want to tear out my eyes from their sockets just to stop the pain, but I have never been able to find out any metabolic problem...

The more severe I've become, the more difficulty I have with falling asleep too, and like your daughter, the sick feeling gets worse through the night. I think @strategist has summed up this experience really well. I think I need to put this in writing to my GP, who still focuses on the fatigue...

They have a lot of discussions about Long Covid on Times Radio: https://www.thetimes.co.uk/radio I'm listening to them discussing it right now, the presenter said it may be a future health crisis with up to half a million people affected by it (based on the 1 in 10 scenario) in the coming...

I also find the PEM doesn't start until I have slept. If I really need to complete a specific task I have always aimed to do it on the same day, knowing it may be weeks or months before I can return to it if it's left unfinished. When I was less severe I was able to get a lot more done around...

I've often thought this too. Edit: I definitely feel like I'm 'poisoned' after exertion, which gets worse the 2nd and 3rd day after it.

Feeling some relief as my teacher daughter (the only family member who helps me/provides some care) has just told me she will now be getting a weekly test. However, I don't think this will be the more reliable PCR test, I haven't asked her which type they will be giving teachers (as opposed to...

I now have to book Ocado slots at least 3 weeks' in advance, in November I could get one within a few days (this changed in December, but that was due to the usual Xmas issues). Waitrose is now fully booked in all their 'priority slots', which only show 2 weeks ahead. I haven't checked Tesco or...

I worked out very quickly that exercise harmed me, back in the mid 90's, so would never have agreed to participate in a trial of GET. I am sure there are many other PWME like me, so any trial would never have been representative of patients. I am unsure how far back the ME charities were doing...

I do the odd order with Ocado, mostly for store cupboard items as they have such a large range of organic items unavailable from other supermarkets in my area. My cats love their canned tuna in spring water, one can does all 4 of them, I give them it a couple of times a week (as they have...