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The questionnaire reads: So this is for UK patients only I suppose?

I see it differently. I think the review has allready taken place. It was concluded that new guidelines needed to be written to reflect recent developments. Correct me if I'm wrong but the assignment of the committee members is not to look at the 2007 guideline and see if it needs any changes...

I’ll probably get criticized for being naïve in posting this. It’s not that I don’t see many problems or how far we actually are from understanding and treating this disease. Just thought it was worthwhile to zoom out for a moment and reflect on how things are going.

Yesterday the Belgium assessment report from the ME/CFS centre in Leuven came out. There are a lot of bad things in this report. CBT was for example said to be successful when the improvements were probably no larger than natural progression of the disease (discussion of the report here). But...

The full assessment report about the ME/CVS center in Leuven is now available online (In Dutch only, no English summary): https://www.riziv.fgov.be/SiteCollectionDocuments/eindverslag_MDCCVS_RIZIV_2018_final.pdf?fbclid=IwAR3_5BzZ8LbIbgMnNRacaNqviRf9eP1D67XeTIbiV2yavQYOhx-HEiwSwr4 My first...

Didn't the fact that they looked at codes with continuous enrollment from 2 to 4 years partially solve that problem of PVFS cases resolving in a short timespan, or am I misinterpreting this? You also have to compare it to what we currently had as estimates. You can have Fukuda CFS and recover...

Yes, I was making the argument with the NICE guidelines in mind. I think we should not ask for better informed GPs with the idea that they could make the diagnosis. I think internists should be educated about ME/CFS and local ME/CFS centres should be formed where the diagnosis can be made. NICE...

Yes. I basically ignored the results of ME + CFS diagnoses because of the problems with the ICD-CM codes for CFS and I focused on ME-results only, for the reasons you mention. As you explained the ME in this paper is not ICC-defined ME but something else. Nonetheless I think it’s a relatively...

Sad that there are ME/CFS centres without someone who can make the diagnosis of ME/CFS. On twitter I heard from Sasha that the same was true in Australia. I agree that a well informed GP would be helpful, but don't see it as a realistic goal to expect from them to make a complex diagnosis like...

This is an important paper, with lots of data. I tried to tweet a summary of it: 1) An important paper on ME/CFS was published today. The authors looked at a large medical insurance database of 50 million people. This gave insight into enormous data about ME/CFS. The paper is open access and...

Don't know about this. How would they test this, it would simply be one specialist opinion versus another.

True. Guess I just wanted to make the point and saw this as an occasion to do so. I think I have seen the ME Association claim that GPs should be informed to make an accurate diagnosis of ME/CFS, so I wanted to make this argument to them. What about the CFS-centres? Even if they are...

I don't think GPs should be making the diagnosis of ME/CFS, so I went for "An understanding of the impact of symptoms and awareness of pharmacological symptom management" EDIT: The ME Association page says : "If you have any additional feedback then please send it to Russell Fleming via email...

Indeed. Her bio on PLOS reads: This is nice.

Hilda Bastian is a well respected skeptic who has a blog on Plos One about science and research methodology. Would be great if she got involved as well.

I would like to participate but I suspect this is for US residents only. The announcement reads: I suppose that will be difficult, from outside the US.

I hope all ME/CFS-patients will fill in the survey to ensure Cochrane will have a stricter COI policy. This is really important.

My quick thoughts: 1) Tovey confirms that Cochrane planned to temporarily withdraw the Larun et al. GET review because the authors did not adequately respond to criticism in time. This was what the Reuters article was about. "A subsequent meeting with two of the authors” made the Cochrane...

A study from South Korea (Epub ahead of print): https://www.ncbi.nlm.nih.gov/pubmed/30605994

It's not really pain and stiffness sounds to benign. It's actualy very similar to a normal person going beyond his/her limits when exercising, for example a cyclist after a race, not being able to walk straight for a moment. Don't know the correct word for this in English, probably muscle...