Search results

Peak Oxygen Uptake in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Meta-Analysis. Franklin JD, Atkinson G, Atkinson JM, Batterham AM. Int J Sports Med. 2018 Dec 17. doi: 10.1055/a-0802-9175. [Epub ahead of print] Abstract: "To evaluate the magnitude of the difference in VO2peak...

I don’t know if this is the question. One of the few useful things we learned from CFS research is that there is a lot of idiopathic chronic fatigue out there and only a very tiny percentage is made up of CFS patients. We also know that a significant proportion of CFS patients do not have ME...

I find these figures hard to believe. The prevalence is almost double of previous estimates. Perhaps these insurance files relied on GP diagnosis of CFS? Previous studies showed that 40% of such GP diagnoses turn out to be wrong when checked by a specialist. Looking forward to the full text.

This sounds like a positive development. Great that they see the CCC as the standard diagnostic criteria and question results of cfs studies. Would like to learn more about the report and the situation in Sweden. Do we have Swedish forum members who can give more background info?

Think there is some confusion here. The paper never claims the patients with persistent fatigue after interferon alpha had cfs, they simply compared them to a sample of cfs patients selected by the Oxford criteria. The comparison showed that the persistent fatigue patients had much less fatigue...

In Belgium psychodynamic oriented psychiatrists have elaborated the CBT model for ME/CFS. They say the triggering event is no coincidence because ME/CFS patients were overworking themselves. And they were overdoing it because they are such perfectionists which is in itself a consequence of the...

I had some trouble finding the interview with @JohnTheJack but here it is (it start's at minute 44) https://www.bbc.co.uk/sounds/play/m0001n52 I think you did really great (your voice was made for radio). I particularly liked the part where you start questioning Pariante yourself, but stayed...

I think I would have found this an interesting study if they presented it as a study of persisting fatigue that can be relevant for conditions like ME/CFS. As Simon pointed out, persisting fatigue was not associated with psychosocial factors (history of depression, stressful life event, early...

Ok, but there are still some things that don’t add up. The patients in the trial were given very cautious instructions to increase their activity level. GET used a safe baseline, small increases with a mutual agreed planning, heart rate monitoring and 15 sessions of oversight by a trained...

Do you think that was the case? Because the many patient surveys indicate that quite a lot of people with ME have tried GET and I know that some important ME advocates did as well. In the early stages of ME you do not know for sure what disease you have and how your body will respond. So if...

I’m quite new to this. I postponed reading the actual PACE trial documents until recently. What struck me is how bad the results are even if you were to take everything the PACE-authors said for granted. Take for example CBT: null results for the 6 min walking test, the step-fitness test...

On the other hand, I think that the evidence we have of harms of GET does not reflect the actual danger/risk of this therapy. Most of the RCT’s of GET were seriously flawed and did not assess adverse reactions adequately. Only the PACE trial did an attempt, but we don’t know if those...

Nunez et al. reported worse physical function and more pain 12 months after a multidisciplinary intervention that combined GET and CBT. Núñez M, Fernández-Solà J, Nuñez E, Fernández-Huerta JM, Godás-Sieso T, Gomez-Gil E. Health-related quality of life in patients with chronic fatigue syndrome...

Oh wow. Patients were selected using the Oxford criteria, improvement criteria from the PACE trial were used with only subjective outcomes and there was no control condition whatsoever. I really hope this is a hoax uncovering the nonsense in ME/CFS research.

Actually I remember reading the temporary and extended version of the previous NICE guideline and thinking there were some good elements in there. Unfortunately most did not reach the final (shortened) guideline - partly because of the aggressive comments by Barths I suppose. Here are some...

Yes, sorry I think we agree on content but simply used a different definition of pre-emptive rest. I thought it meant rest that isn’t aimed at preventing PEM or post exertional relapses but instead at helping recovery. The Goudsmit and Ho Yen paper you refer to for example writes: “Ho-Yen...

Thanks for explaining @Evergreen! I still have some doubts about this, though. I fear pacing will become an ambiguous name for all the behavioral interventions ME/CFS patients find helpful. It should be possible for pacing to be wrong. And it should be possible to criticize pacing even if...

Awesome. Thank you!

Any chance the Norwegians (@Kalliope maybe?) could give more information or maybe documents about this? I think Belgian organisations could use this to show the government an alternative model that is allready in practice elsewhere. Many thanks in advance!

Interesting. The Norwegian ME Association seems like a very competent organisation. I particularly liked this section of the interview: "A few years ago, the Norwegian Research Council wanted to change how grants were given, after new legislation asked for more involvement from...