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Couldn't agree more. And does it get more dismissive than "discomfort"? That discomfort could theoretically be immediate or delayed, but given that we get told nothing about the symptoms patients were experiencing during the tasks, and they later say something similar after referring to the...

I googled the speaker of that talk, Katie MacDonald. She's a patient and advocate. She explains the FOMO bit here: I think for her that makes sense - not doing X rarely means less physical pain for her, so it makes sense to do it. I'm guessing not everyone with migraine has the same...

I also always have the words of an excellent neurologist ringing in my ears. He was appalled that I had been put on an antidepressant despite not having depression (it was not one of the ones that can be helpful for pain or sleep, nor did I have issues with pain or sleep at the time, and I...

I agree that this is not expressed clearly in the paper. I think that when they say they are referring to what pwME intend to do when effort preference kicks in, rather than what they intend to do at the beginning of the task. If you view effort preference as involuntary (as Nath has said...

I was open to trying plenty of things for the first 8-10 years of ME/CFS, but learned that I was far more successful at getting deterioration from the exertion of attending appointments and side effects than anything resembling a benefit. Here’s the problem, from my point of view: In open...

:emoji_fingers_crossed:

Oh no! I was just about to post a big long thing on the Mudie study, but it wouldn't let me post it, I'm guessing because the threads were being merged. It is now lost, and I have to rest. You'll have to imagine how insightful it was.;)

I read this as a tilt test (for orthostatic intolerance) that they had somehow managed to blind, where the person wouldn't know if they were having a real tilt test or not! Really good luck with the blind. I'm not familiar with that system, but I do have motorised blinds (roller and...

I don't get migraines, and am very grateful for that, as I know how debilitating they can be, with or without ME/CFS. But during a hospital admission, a doctor with an interest in ME/CFS wanted to put me on Topamax. Their rationale was that crashes were a kind of migraine. I did not go on...

Really hope you/your docs figure it out. Do keep badgering them to follow you up if they're not doing that already or if your levels aren't going up. Good luck with all the tests. Crossing fingers for you.

Not being able to tolerate oral iron is a good reason for an iron infusion. Maybe you could ask for referral to a haematologist if you aren't seeing one already?

These studies seem to confirm alternate day dosing of iron supplements being preferable to daily dosing - they were done in women only though. https://pubmed.ncbi.nlm.nih.gov/31413088/#:~:text=In%20iron%2Ddepleted%20women%20without,is%20given%20on%20alternate%20days...

Good that you're being checked out for possible gastro bleeds. In case it's relevant, a consultant haematologist told me that it is better to take iron supplements every second day rather than every day - you actually absorb more that way. This was a moot point for me as I can't tolerate any...

Yeah, activity management ≠ pacing or energy management. But plenty of clinicians (docs and therapists) use the term pacing to refer to graded activity therapies. I have often seen patients describe activity management as pacing too. Gaunt et al's definition of activity management is...

And just to qualify all of this - if the effort task does not show what they think it shows, ie effort preference, then this nice story falls apart. If the effort task is detecting a real difference between pwME and healthies, then this should show up in bigger samples with the task modified...

I think it's this: So they think that pwME/their brains (depending on which author you ask) choose to not maintain grip force despite being able to. If you think of this not as a choice, but as a kind of brake in the brain that is being activated for reasons unknown (but perhaps immunological...

@ME/CFS Skeptic Very helpful posts! Especially on the literature - great to have the info in your tables and quotes assembled all together. I was looking at something a bit different - I was interested to know if floundering a bit on hard tasks might have made people (both healthy volunteers...

Yep, I'm a fan of the work of van Campen and that team generally, though mindful that they're likely seeing an unrepresentative group. What I'm not clear on is how we'd explain cognitive difficulties when supine, though perhaps we're generally on enough of an incline to make a difference over a...

Have you been fraternising with HV F?

Definitely a possibility. In the repetitive grip testing by functional imaging they report: Maybe reduced blood flow to the brain could be what causes pwME to stop being able to exert? Fwiw, I had cerebral blood flow measured during a tilt test and it was supposedly fine. (I fainted quite...