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Interesting. Prusti is reporting reversible serum-induced mitochondrial alterations - sounds similar to what Ron Davis has reported. EDIT: Seems like @Dancer and @Andy were thinking the same thing.

There was this interesting bit about the intramural study with Brian Wallit. He reported only 3 out of 22 ME/CFS being excluded because they found another, rare disorder. One patient had rare cancer, one atypical myositis, and one parkinsonism. But then he showed that the healthy controls had...

Here's Davis reaction to the rejection: http://www.meaction.net/wp-content/uploads/2015/08/ResponseToNIHRejectionsRonDavis.pdf But it doesn't say anything about Stanford. Perhaps Davis only mentioned this only in video's and talks?

I'm a little bit worried that it isn't rising fast enough. Does anyone know the trajectory from last year?

Apologies Paddy, @Itsnotallaboutmepodcast Thanks for making the podcast!

There's one other passage in the podcast that deserves to be repeated because I think it eloquently explains why the problem goes far beyond GET/CBT and lies within the fear-avoidance model itself. Patients do not necessarily have to follow GET/CBT or even have contact with a doctor who believes...

I would recommend every ME/CFS patient to listen to this podcast. It's very valuable to hear someone who has lived with this illness for so long share his experiences. There's one very moving passage in the middle of the podcast about not feeling guilty. I don't have the energy to make a full...

Yes, I agree with this. I'm thinking more and more that this might be more important than which criteria is used (CCC, ICC or IOM-criteria). If you simply ask patients 'do you have post-exertional malaise?' or 'do you feel worse after exertion?' that might not reveal much. But if I'm not...

Yeah, you're right, it's probably too late already. Forgot that the committee had to consider it first. I will try to work on a personal submission, as you suggest. Perhaps I should have formulated my thoughts more carefully, cause I didn't want to suggest S4ME or forum members should have done...

Just a reminder that the deadline is April 15. It usually takes a week for S4ME to vote on a proposal. So if we want the forum to make a submission, the time to act and write a proposal is pretty much now. It would be somewhat disappointing if S4ME would not submit advice. We discuss science...

Commentary: Long Term Follow up of Young People With Chronic Fatigue Syndrome Attending a Pediatric Outpatient Service In an impressive follow-up study of 784 young people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), K.S. Rowe reports recovery rates of up to 68%. [1] This...

I've submitted a comment to this article, but it has been rejected by Frontiers in Pediatrics (it did not meet the article type criteria). My comment was written and submitted before Simon McGrath's remarks, who raised some similar issues. I had some problems with the high recovery rates...

Good question. In the PACE-trial only 8% of participants in the GET group and only 4% in the CBT group had serious adverse events. Can't access the Fluge et al. paper yet, but it will be interesting to compare this outcome with what was reported in the PACE-trial.

The whole idea seems to be a label that notifies doctors that the patient needs less investigation and lab tests and more psychotherapy, without the patient realizing this.

Chalder et al. have published a response to the letters: "However CFS is operationalised young people’s perspectives are important." https://link.springer.com/article/10.1007/s10865-019-00034-3

Interesting review, thanks for posting this. In ME/CFS, there have been studies that claimed CBT improves cortisol respons or grey matter volume, but these did not use a control condition, so very misleading.

As far as I know, these studies like the one by Newton et al. looked at the diagnosis of patients who were referred to a ME/CFS centre. So the patients were suspected to have ME/CFS, probably by their GP, but turned out to have other conditions after examination by a ME/CFS specialist. Many of...

Does that mean that, in your view, the explanation of the CDC for removing the recommendation for GET and CBT (confusion about what the terms mean) makes sense?

Does anyone have a transcript?

ME/CFS probably smells like being unable to wash because of exhaustion, with a flavor of left-over deep freeze pizza.