Search results

I've just been listening to a BBC podcast on the Covid Inquiry where a senior nurse was in tears describing having to have critical care nurses trying to care for 6 patients and nurses who were not critical care trained having to try to help, where they should have had trained critical care...

copied from UK news I've just been listening to a BBC podcast on the Covid Inquiry where a senior nurse was in tears describing having to have critical care nurses trying to care for 6 patients and nurses who were not critical care trained having to try to help, where they should have had...

Lots of the things they are attributing to lockdown are unlikely to be related, for example, kids starting school now (aged 4 to 5) not being toilet trained. But they were babies during lockdowns, so wouldn't have been ready to be toilet trianed back then. Much more likely is the UK government...

My daughter was diagnosed by a rheumatologist and the same man did a good report that got me ill health retirement. He clearly believed ME was a physical disease. That was back in about 1998 and 2004, and he was quite elderly then, so his attitude had not been polluted by the 2007 NICE...

Moderator note While this hypothesis is interesting, it is as yet unproven, and the subtypes described are hypotheses, not a proven protocol for self diagnosis and treatment. Please be aware of this rule, and do not ask for, or offer, diagnosis of which hypothesised subtype you may belong to...

I think there's no better option than rheumatologists as things are at present. Neurologists will put us in FND and prescribe rehab, Rehab departments will prescribe rehab, psychiatrists will put us in psychosomatic and prescribe CBT... and so it goes.

Hi Karen, Welcome and I'm sorry you haven't been able to post yet. I've alerted the doorkeeping/mod team to see if we can sort out the problem. Thank you very much for responding fully and openly to concerns expressed on this thread. I am so far very impressed by the efforts of your small team...

That's a really good comprehensive report, @Hutan. I hope the people you submitted it to take notice.

Does it say what people should do if they are on ESA and don't receive a letter by the end of September?

I don't respond well to people who claim a cure but you have to buy the book to find out what it is.

I want to tell people I have a long term chronic illness that makes me feel ill all the time and limits my ability to do things, and that it's a very strange illness that the more you do any sort of exercise, including ordinary things like walking, the sicker you get, so any sort of attempts at...

Also posted and discussed here: #ThereForME campaign / Building an NHS that’s there for Long Covid and ME

I assume Dr Kane knows some of them, and the people who run the #ThereForMe campaign are in contact with others through Long Covid support groups. There may also be support groups of NHS workers with Long Covid and ME/CFS.

Good to see so many in support. A few surprises given their previous (current?) attitudes towards ME/CFS. If anyone can encourage more clinicians to join us, please do.

A post has been moved to the discussion thread about the template. https://www.s4me.info/threads/care-and-support-plan-template-free-to-download-action-for-me.39801/page-10#post-554108

I agree. It's unsuitable because of length and wordiness for anyone with severe ME/CFS. I got around it by not reading all the detail, and just taking a quick stab at choosing an option for each question without taking time to think about it, simply because I wanted to be able to copy and paste...

I agree there is a big problem here. I think I recall that the first version of this questionnaire did not include PEM at all, with the second questionnaire called PASS being intended to collect detailed information about the pwME's PEM experiences over the last month, but instead it conflated...

Can you explain more about what inflammation is, and why you article is wrong?

This thread is worth reading about Aylward's impact on DWP and ME/CFS Blaming the victim, all over again: Waddell and Aylward’s biopsychosocial (BPS) model of disability, 2016, Shakespeare et al Edit: And this one: Government and Insurance companies - establishing the BPS model

Moderator note We have read the discussion of whether posts should be moved and taken note of points made. We have decided to leave most of the discussion even though it is a diversion from the research topic and breaches Rule 9: Specific moderation decisions should not be discussed publicly. A...