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Because the labelling is so vague and I want to know what the patients are reporting and not which arbitrary label a clinician decides to give it. I agree, which is why I’m asking about the symptoms. Lots of people feel unwell while upright. Some have increased HR as well, others don’t. Lots...

This was mentioned elsewhere and I’m trying to understand which symptoms the participants had, other than changes in HR and BP when standing. This says nothing about which symptoms. So is POT not a symptoms of OI in their mind? Meaning that OI refers to other symptoms when standing/sitting...

From the authors’s response. This is maddening. I don’t understand what they mean with the bolded part. Anything that affects anything in your body will affect brain processes one way or another. These things are stated as facts, but are very clearly unproven hypotheses. They are referencing...

They’ve started justifying the change to the name «functional» because it meets less resistance among patients. In other words, they are optimising their gaslighting.

At a glance, it seems like the same kind of thing that Hunt has argued: https://www.s4me.info/threads/biopsychosocial-model-or-bio-political-ideology-medically-unexplained-symptoms-welfare-reform-and-the-implications-for-long-covid-2022-hunt.30790/

Golly, he must really be an expert then! /s

Not so functional after all then?

You wouldn’t be able to test any of the hypotheses that were generated by that kind of approach, so I doubt they would be of any value.

Good point. My «supportive physiotherapy» consists of a physio telling me that I don’t understand my ME/CFS, PEM and how to pace. They are apparently not treating me, even though they keep insisting they can make me better.

I have not heard of any convincing evidence that people develop speech difficulties per se after covid. Brainfog, PEM and neurological issues might make speech difficult, but I’m not sure there’s any need for speech therapists. This seems like yet another solution looking for a problem.

I don’t have a medical background and most of my first two years as a patient were spent talking to other patients elsewhere about what this or that researcher said. The problem with this approach is that so much of the research simply isn’t good enough. So you end up learning a lot of...

All CBT is used with the intention of changing behaviours and/or thoughts of the patient. So when CBT is used for ME/CFS, it means any therapies that focuses on changing the thoughts or behaviours of pwME/CFS. The general distinctions are between supportive and curative CBT for ME/CFS...

It’s copy paste from the pdf so it might just be a typo that wasn’t caught

This? https://s4me.info/threads/is-the-key-pathology-of-me-cfs-in-bone-marrow.46775/post-649367 Briefly discussed here: https://www.s4me.info/threads/issues-with-x-chromosome-inactivation-as-a-reason-for-female-predominance-in-me-cfs.45850/

I’m very curious about how that would actually happen - why would a medical researcher listen to a historian about how they should do research? Semmelweis was ignored by his peers for decades, I don’t see how non-peers would stand a better chance today. I agree that this is an issue, but I also...

If you highlight text in a post, you should get an quote option that pops up. You can also click on the +Quote button at the bottom of a post to quote the entire post in one. Then you insert the quotes by clicking on the quotes button at the bottom of the text box where you type your comment...

The start of it is brilliant and haunting, but I think it falls through here: This is not new. We’re talking about basic scientific principles which have mostly been completely neglected and often actively worked against (e.g. by creating risk of bias assessment tools specifically for...