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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...

I don't get that impression from the information on the other thread: (Baker Institute, Australia) "Funding to advance understanding of the impacts of long Covid" plus POTS and ME/CFS I was also concerned that the ad doesn't mention the purpose of the research, but the fuller description on the...

I'd put that the other way around. Patients who experience more CFS symptoms are likely to find the testing process more stressful.

The detail you're asked for for each symptom is not useful for spotting changes, for example, This does not distinguish between severe nausea with vomiting, and mild nausea, it's only about how often, and even then, how do you distinguish between once in the month, and half the time - both...

Medications can also change resting heart rate. I was prescribed a daily inhaler for my mild asthma to try instead of relying on occasional use of an inhaler when symptoms worsened. After a week with my resting heart rate creeping up daily to reach 10 above my normal and still climbing, and no...

Go to this thread for discussion: https://www.s4me.info/threads/uk-me-association-funds-research-for-a-new-clinical-assessment-toolkit-in-nhs-me-cfs-specialist-services-2023.33221/page-55#post-553690

This is a quote from the blurb at the start of the questionnaire, see my previous posts. So after filling in all that detail, which to my mind is both too much and not specific enough, it seems to be aimed at a symptom/frequency/severity count to 'start discussions about how to manage activity...