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Thank you for sharing your experience, @LJord. We have another thread about this device: Monitoring Carotid Blood Flow Using In-Ear Wearable Device During Tilt-Table Testing, 2023, Hemantkumar Tripathi MD et al

I agree. I did find in tiny text the option of a low stimulus version, but that still has lots of irrelevant pictures.

I've had a quick look at a few pages on this website. It seems to be run by a doctor and some people with Long Covid. For example: The information on PEM is OK, with links to some resources on pacing. The section on apheresis says there isn't good evidence to support its use for Long Covid...

Ugh, brings back memories of having to go into the genetics department on the weekend to look after my drosophila and try to tell the difference between immature red and brown eyed flies to separate them before maturity. I hated the whole process. I prefer thinking to messing about with ether on...

I think with Long Covid there has been some impact on employers and governments of the numbers becoming too sick to work, so bodies like the NIH are given billions to research it.

I agree. Fatigue is the least of our worries. Pain, sensory sensitivities especially the less recognised ones of touch and pressure sensitivity, nausea so you feel like you're going to throw up, headache so you don't want to move your head...

Hi @SteveFifield, welcome. I haven't tried Visible with the armband, but am interested to know more about how they do their calculations and on what basis. I am borderline moderate/severe or severe, depending which scale I read. Like you I find the whole undressing, dressing and showering...

Replicating this experiment with pwME would be impossible now, as anyone asked to take it can google it, find this and similar discussions, and decide deliberately to, for example, choose the hard task every time, regardless of whether they are too fatigued to complete them.

I think I recognised that one from some sort of anxiety or depression questionnaire. Totally inappropriate for asking people with disabling chronic illnesses.

Discussion thread on ACT here: https://www.s4me.info/threads/acceptance-and-commitment-therapy-for-me-cfs-discussion-thread.23207/

It did not seem clear to me whether they were saying some pwME who need nutritional support because of swallowing difficulties and stomach pain also needed saline infusions to ensure adequate hydration, ie as part of the nutritional treatment, or whether they were saying the topic of saline...

I'm not sure I understand whether the statement by parents and carers is intended to criticise some aspect of Jonathan Edwards article, or to argue for any of the suggestions he made for a protocol should be different. From my reading, they support the recommendations for appropriate care with...

I wonder whether it was clinically significant improvement. And no follow up, so responses taken while pwFM were still in influenced by whatever the ACT program persuaded them they should be thinking about their health.

Can you provide a link?

Yes, the 'tired but wired' sleepless night(s) I experience as an early stage of a crash.

Thread | Article

We have two threads on the C19 Yorkshire Rehabilitation Scale: The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID-19 syndrome, 2022, Sivan The COVID-19 Yorkshire Rehabilitation Scale (C19-YRS): application and...

https://www.elaros.com/ ELAROS is a private company that works with the NHS to provide digital apps and websites, including patient apps where they can fill in PROMs, and access to these by clinicians. The initial aim, I think is for it to be used particularly for Long Covid clinics to track...

Would it be possible to ask for the statistical analysis plan in detail, including which tests were used on which data points and why? And to ask for another statistician to reanalyse the data using what they consider appropriate tests? I'm sorry my stats is too rusty to be useful.

There is the additional problem of people being too sick to tolerate the help they need with things like bathing, so ending up living unwashed. I have reduced the support I pay for because I find dealing with carers too exhausting.