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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...

For the record:

:hug: @bobbler, that was heartfelt. Thank you for sharing your thoughts so openly.

I agree it's an important problem that needs to be addressed. I think there's often little or no understanding that someone who walks into a clinic and sits on a chair, apparently without a problem, is able to do so for only a short time before needing urgently to lie down. In a well run...

Fibronectin was found by Prusty in ME/CFS: Preprint Increased circulating fibronectin, depletion of natural IgM and heightened EBV, HSV-1 reactivation in ME/CFS and long COVID, 2023, Liu, Prusty et al

Fair enough. Any member is free to report posts that have been moved and explain why they want them left where they were posted. Sometimes we copy posts back to the original thread if we are helped to understand why they are relevant.

Perhaps it will help us understand the point you are making about relevance of the discussion if you share these 4 pages of points relevant to the paper here. As mods moving strings of posts that appear to take a thread off its specific topic, we are mindful that many pwME don't have the...

Hmm. My immediate response to reading this was that it's a problem if the subgroup you belong to is determined by which research group analysed your sample! I guess that's not what he meant.

I get the argument that really well trained doctors don't rely on biomarkers for diagnoses. But most of us in the UK with ME/CFS only have access to GP's who are clueless about diagnosing and managing ME/CFS, and persist in seeing us as having psychosomatic tiredness, and telling us to try to...

That sounds like an extremely skewed sample.

I think there is a world of difference between disability and disabling illness. I tend to say I have the latter, not the former. Many people with disabilities are very healthy, I'm not. I'm not making any judgement about which is harder to live with, but they are just different situations. I...

It's now over a year since we sent our first letter to Cochrane (28th August 2023), and started our petition (4th September 2023). It is fast approaching the 5th anniversary of publication of the Larun review (2nd October 2019). In our most recent letter to Cochrane a month ago, we said...