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I thought Robert West was being ironic but then I clicked on the link to Twitter and realised he wasn't ---- how indeed could we do without Cochrane ---- if only! And as for the "Cochrane Tobacco Addiction Group's work" well if they're all smoking there may be some hope!

Here's an extract from a response I received from NICE*. Assuming these statements, from NICE, are accurate (I copied my responses to the ME/CFS APPG & Covid APPG - so they had better be!) then NICE independently assesses the evidence. If so then where is the saving? *NICE to me: "Each review...

In their response to me NICE stated that the evaluate all reviews i.e. they do not use Cochrane reviews without reviewing them. If true then what use is the link to Cochrane i.e. if NICE has to carry out their own evaluation? EDIT - I've posted an extract from NICEs email to me below. Yes as a...

@CRG has pointed out that a public body retains its statutory duties. Therefore, on the face of it, NICE can engage in whatever "relationships" it sees fit to i.e. regarding the delivery of its statutory duties - preparation of guidelines. The problem re NICEs relationship with Cochrane is that...

This is some correspondence with NICE* - I've been trying to challenge NICE's use of GRADE directly and indirectly (NICE uses Cochrane reviews and Cochrane uses GRADE to prouce those reviews). The ME/CFS APPG should be a way to influence NICE's use of GRADE/Cochrane so I've copied these emails...

Just Googled for a few minutes and came up with this: "GWAS now implicates innate immune genes (44, 51) as being a risk factor and supports a primary role for the inflammatory elements of AD pathology via inappropriate activation of the complement system (5254) in association with Ab plaques and...

Did anyone notice the reference to Q fever? Q fever can result in a post infectious disabling fatigue which looks like ME/CFS.

Reminds me of a famous Scottish climber Hamish MacInnes who developed an infection and was sectioned - form of dementia. He recovered and gradually rebuilt (some of) his memory.

I think an Alzheimer's Genome-wide association studies (GWAS) study indicated that the disease was infectious. However, it's taken time to understand the mechanism - possibly an indication of the value of GWAS and an indication that it can take time to understand [EDIT - a disease i.e. after a...

It's interesting that we're between a rock and a hard place. I've had some feedback, from a person with ME/CFS in Switzerland, and the (psychiatrist) Doctor (Sarah Schiebler) is very supportive of people with ME/CFS ---- benefits, ---. So maybe try to get the study protocol modified (to include...

Is there reason to think this is linked to ME/CFS?

Thanks @CRG Err I've had some problems with European ME Alliance - the masonic(?) term blackballed comes to mind (don't worry I'm smiling as I type). Thanks for the laugh! I've posted on the ME Action Global site (one reply tagging someone who might have contacts) and the ME Action European...

I decided to contact the "ME/CFS Association Switzerland" to see if they wish to make a formal complaint*, to the University of Zurich, regarding this trial. I suppose other actions are possible e.g. encouraging people not to participate unless the protocol is revised to include objective...

Certainly true in the UK. I think @Trish has highlighted that some researchers receive funding for research on teenagers which has no objective outcome criteria - something that still continues and has done for a decade (+?).

Grateful for views here. Here's an extract: "Primary outcome measure Primary outcome measure Results (Table 2 and Figure 2) at baseline indicated that the three conditions were not statistically different on the FSS (all p-values were > .24). Results at 3-month follow-up revealed that the...

Thanks @Sly Saint I couldn't open the webpage.

I think there was one trial of exercise (Dutch study?) which used actimetry to measure the outcome - does anyone remember what it was? Thanks. EDIT - I've found a reference to the study via NICE evidence review: "Friedberg "Efficacy of two delivery modes of behavioral self-management in severe...

Here's a comment, on this trial, I came across: "This sounds like a bad study, indeed. IMHO, questionnaires are fine (preferably in combination with other measures) in a blinded study. Which this is not. They compare two treatment groups and a control group, which is just "waiting for...

EDIT - yes they should simply state they don't know and set out research options i.e. to try to understand the disease and eventually treat it. This stuff just looks like self serving crap.

Noticed this: "Sponsors and Collaborators Sarah Schiebler University of Zurich" Here's Sarah Schiebler's biop (not confidence building): https://www.usz.ch/team/sarah-lavinia-florence-schiebler/