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References [1] Cochrane Library: an improved online platform to guide health decision-making across the world. August 8, 2018. https://www.cochrane.org/news/cochrane-library-improved-online-platform-guide-health-decision-making-across-world [2] Tuller D. Trial By Error: The Cochrane...

The Cochrane correspondence The Cochrane review on exercise therapy for patients suffering from chronic fatigue syndrome has been the subject of ongoing controversy. In October 2018, a Reuters news article suggested that Cochrane would temporarily withdraw the review due to pressure and...

Thanks to @Kalliope I was able to read the older correspondence from back in 2018. I thought it was interesting, especially since it gives a whole different impression than what was reported in the Reuters article. I've tried to summarize it in a blog post, so that those outside the ME/CFS...

It's from page 48 of the Cochrane review:

Thanks for the overview @Marit @memhj ! It was a bit hard to follow in the google translate version, but If I understand correctly the problem is (1) that none of the documents became available until February 1, 2019 although they date back many months before that (2) that some documents seem...

De Meirleir used to prescribe Nexavir. There was a court trial about it because he imported it to Belgium without permission. De Meirleir argued that it was just a nutritional supplement, but the court eventually ruled that it was a drug.

I think I remember BPS authors say that reconditioning can result in a temporary increase in symptoms such as muscle soreness. So I assume they acknowledge gradually increasing your exercise level can cause symptom flares or 'setbacks', but that it's seen as a normal part of getting fitter and...

Good idea. I think it would be worthwhile to interview patients to see what they mean when they fill in depression questoinnaires such as HADS. This shouldn't be too hard or expensive for a research team to do. The argument that ME/CFS has much higher rates of depression than other illnesses...

That seems like the opposite of what Snaith was saying.

Nope, sorry. I was just quoting Wessely.

The argument by Sharpe & Greco has been used by Simon Wessely in the past. A 2011 interview with The Times reads:

Good idea. That would be a 'psychosocial intervention' that actually makes sense. Help patients connect online, be more independent through the use of technology, etc.

@Caroline Struthers, these emails may be of interest to you.

Thanks to @Marit @memhj for providing these documents. Are these all the emails of that exchange that are publicly available? I got the impression we only got snapshots. The website linked, eInnsyn, also has documents on this from 2018 but you have to file a request to see them, apparently. Does...

Thanks Andy!

I know, sorry about that. I left that out in an attempt to explain the results in an easily readable summary. I assumed that those interested in response rates and study methodology will go for the full study instead of my tweets about it. Hope that's ok. I assumed that the setbacks and...

Trying to make some promo for the article on twitter. Hope I haven't made a (major) mistake in summarizing it. Here's what I wrote: 1) There’s a new interesting study out by a collaboration of ME/CFS patients and scientists. They’ve sent Freedom of Information requests to 38 NHS specialist...

Great idea and well executed. Many thanks to all those involved! That's also interesting.

Interesting reference, thanks for sharing. https://www.jstor.org/stable/25310441?seq=1#page_scan_tab_contents In some quotes it's almost like you're hearing the BPS view on CFS: The treatment didn't consist of graded activity but of an aggressive resting cure as proposed by Weir Mitchell. But...

I like the idea of a GWAS, as it could further the field with some reliable clues into ME/CFS. But I'm skeptical that a study with 20.000 ME/CFS patients is feasible. If a study uses more than 100 ME/CFS patients that's already considered a big deal. And using questionnaire screens to diagnose...