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@Formerhuman I think I misunderstood your question earlier. I agree with Jonathan that all that can reasonably be expected by someone is to not contribute directly to the misinformation on topics where they don’t have enough skills to know what is misinformation and not. If anyone wants to...

If they have really bad HR responses when standing or very high HR in general (and palpitations) that is affecting them negatively, he might prescribe very low dose beta blockers. But he is clear that it will probably only affect HR and palpitations, and we shouldn’t expect it to fix the OI...

No matter how it is said, there will be push-back because it’s difficult to communicate and take in the nuances. But we won’t get anywhere by not calling it quackery if it is quackery. You don’t see domestic violence websites shying away from calling something abuse. Gifts can be a nice and...

I say «I have OI, which means I rapidly start feeling very unwell when sitting or standing». POTS is problematic because it says that the rise in HR when standing is causing the issues. And the «best practice» seems to be to drink 3L + of water daily, eat lots of salt, use compression garments...

We could start with the associations, where only a few people have a say in what’s being promoted by them. I’m not saying it’s a quick fix or that other excuses can’t be made for not seeing pwME/CFS, but that is still no reason for not trying to get the associations on board with science. And...

It sounds a lot more to me like «you might become a worse driver if you drive less or drive in less diverse situations». Of course, if your brain is not working as well anymore that could also affect your driving.

I’ve been trying to sort out of the order of events here. The way I see it, there are four forms of medical neglect and abuse going on, and none of them are the fault of the patients. First: The BPS and rehab proponents are actively harming the patients and trying to stop progress in more...

Thank you for explaining. I can see your point. I guess two important questions would be: Do they have PEM? Are the rare variants co-morbidities or contributing to the PEM? I don’t know how likely it would be to stumble upon a non-comobidity rare gene in a small study like this.

I want to attempt to clarify my current thinking. This might change, and it might deviate from what I’ve said previously. I want to apologise for any harm or distress I’ve caused with my communication, if that has been the case. And thank you to those that educate me. ——— We have a right to...

Lots of diseases will have lots of overlapping symptoms. So fulfilling the criteria isn’t enough to establish relevance. Unless we think that ME/CFS is dozens or hundreds of diseases disguised in a trenchcoat, don’t we have to assume that clear one-off pathology is a misdiagnosis unless there...

They used Fukuda and PEM was assessed with asking: https://bmjopen.bmj.com/content/4/11/e005798

Most of the ME/CFS ones. You’ll find problematic statements from all of them. That is not what I’m trying to say. Just that if you’re in an abusive relationship that you can’t get out of, not making him angry might actually save your life. It shouldn’t be like that. But we can’t pretend like...

Thank you, much appreciated! I’m not sure I follow. ME/CFS is a syndrome that is centered around PEM, where there are no other diseases that can explain the symptoms. Of course, that will not always be the case when we understand how ME/CFS actually works (then the disease ME/CFS will explain...

It doesn’t look like this study will do much to solve the quality issues.. They defined MCID for CFQ as 3 points. The between group difference didn’t reach this threshold, which they seem to ignore. They also ignore mostly null findings in the secondary outcomes: All they’ve managed to prove...

Thank you for tagging me! This is not looking good..

They only included them as PACVS if they got symptoms right after the vaccine. I can’t find anything about covid tests in that timeframe, so it’s still possible that some of them might be false positives and just be LC instead. You’re bound to get some of those popping up by chance with the...

Apparently words don’t matter anymore and we can define things as whatever we want.

Of course, but you’d have a hard arguing that ME/CFS is a mood disorder when it doesn’t really present with much mood symptoms.

I survived in «only» 35 C with fans and ice water to dip washcloths in. 40+ would be hell.

Hi and welcome @LizWorthey Can I bother you about adding line breaks between the different questions? I appreciate the effort to format with indentations which already helps, but walls of text are notoriously difficult to read when you’ve got brainfog. Thank you!