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Yes, I have been working on an update of the MEpedia page on craniocervical instability in concert with Jeff and Jennifer (So that we don't get into a competition of deleting or rewriting each other's updates). It's difficult to find an accessible introduction to this subject, so I hope that...

Concerning negative results of the repeated CPET procedure: I don't know if this has been shared on this forum yet but there's a 2018 presentation by Ruud Vermeulen (in Dutch), where he says he did the repeated exercise test on approximately 500 (!) patients but he couldn't see a difference...

Sorry for my comment Hutan, I wasn't aware you've already contacted them and explained things. This must be very frustrating. Thanks very much for your efforts. The most consistent finding thus far is that ME/CFS patients are unable to reproduce their power output at the ventilatory threshold...

Congratulations to the Norwegians for making this possible! I saw that the study was funded by patient organizations. Is there anyone who was involved with this process who can share some of the details (perhaps in PM) so we could try to copy this success in other countries? I'm interested to...

I suspect that this would be because participants were not consistently encouraged to go give everything they have as Snow Leopard suggested, making the peak values less reliable than those at the VT. The authors might have been cautious to not push patients too far and might have done the same...

Not really. The main result that was shown in almost all previous studies - a decreased workload or power output at the ventilatory threshold - was confirmed in this study. We're not cherry picking - it's not that the previous study indicated VO2peak at VT would be the main outcome and that we...

Could you explain what you mean by this: did the studies that did not push patients to their VO2max had smaller differences between patients and controls at the VT of the 2day CPET procedure? What about the current study: patients had lower VO2peak values at both exercise tests but reached...

This is interesting. I think we previously discussed how the ventilatory threshold is often used as a proxy of the turning point to anaerobic energy production and thus lactate accumulation in CPET studies, but that it would be interesting to measure the actual lactate in the blood as some of...

Very sad news.

Or perhaps send a polite email explaining things about GET/CBT and showing appreciating for her wanting to study ME/CFS. She might be genuinely interested but badly informed. Would be good to have another team study PEM and exercise testing in patients with ME/CFS.

I don't think so. It was in the paper Chalder published on patients' experiences with LP: "Several of the participants highlighted the secrecy aspect as unhelpful and difficult, resulting in prejudice and lack of understanding from people around them."

Seems a bit difficult to compare the two as they used different ways to measure fatigue for example. If some of the items on the Chalder Fatigue Scale are largely irrelevant to ME/CFS patients condition, might that not cause improvements to look smaller? I'm sure somebody suggested this before...

Excellent, thanks. Can I ask what you mean by "if you want a placebo, CBT and GET may not be that good."

I think the title of this thread is a bit misleading as it suggests that 18% of patients with MS were first diagnosed with something else. But as I read the abstract it's about patients who were given an MS diagnosis falsely because they didn't satisfy the McDonald Criteria. So they didn't have...

Thanks

Thanks. Does anyone know how to change a title?

Thanks @Dolphin ! I could hug you right now. Not that this is that important but it's darn frustrating to know that the citation you're looking for is out there somewhere but you can't find it, even after long searching.

I think I remember that one of the CBT or GET trials actively encouraged participants to no longer regard themselves as CFS patients. I thought I was confident it was the Dutch team of Bleijenberg and Knoop as they aim for a full recovery. But going through their papers, I can't seem the find...

Thanks for giving this info. Many thanks to the S4ME moderators who are willing to invest their time and energy into this. It doesn't seem like a fun job to do, but it's important.

I would advise keeping it on the forum - otherwise, there will probably be more confusion instead of less. The fact that Jen, one of our most effective advocates, wants to leave the S4ME forum is a sad thing. Is it possible for the moderators to give some information about this, for example...