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To me the politics of ME is quite complex. Invest in ME formed a group called EMEA [European ME Alliance] which is a group of European National Associations led by Invest in ME - if you like EMEA is one of Invest in ME's European lobbying tools. I Googled "emea + invest in me" and this turned...

Excuse me for not keeping up here but if there is a "review of Cochrane" and it's carried out by the faithful/buddies ---- then what is the risk? Surely a body like NICE should have people capable of evaluating a clinical trial and e.g. if it is unblinded, and uses subjective outcomes, then...

Re "Glasziou" I assume that this is: "Prof. Paul Glasziou Director Institute for Evidence-Based Healthcare Faculty of Health Sciences & Medicine" https://bond.edu.au/intl/profile/paul-glasziou With such an impressive resume anyone would be happy to have them on their review panel. I think you...

Hi I happened to be replying to a message from @Ron and thought I might post part of the reply here: "I certainly think the technology is interesting but I think there may be challenges. E.g. if you look at one of Jonas Bergquist's old talks then you'll see that there are about 30,000 geneses...

Yes I had thought that by: commenting on the fact that Solve had policies in place re access to donated samples; and not commenting on the position re access in relation to samples held by NIH & Maureen Hanson (Cornell/OMF); then that could be interpreted as suggesting that NIH & Maureen...

@Andy @Hutan I highlighted that Aaron Ring at Yale University is very interested in obtaining ME/CFS samples to assess them using the REAP platform; e.g. to Vicky Whittemore (NIH), & Maureen Hanson (OMF), both have contacted Aaron and offered samples. Jonas Bergquist (OMF) also offered to...

The establishment being "iconoclastic" a concept that raises some questions!

Has anyone looked for these in ME/CFS? Also, would an association turn up via the GWAS study?

Is this not linked to Prusty's hypothesis that you have latent infection and this causes the downstream effect i.e. ME/CFS? I assume Prusty's controversial (Robert Phair didn't agree) invitation to speak at the NIH symposium - 2 years ago(?)- was due to Nath's interest. Will GWAS help to...

As I noted above, if this technique had been tested against known autoimmune diseases and it identifies the known autoantibodies then we an have some degree of confidence that the technique has potential i.e. now. So yes, as @Jonathan Edwards has suggested, test this technique on ME/CFS samples...

Is the idea that autoantibodies may be relevant in ME/CFS based on the idea that: rituximab only removes some antibody producing cells (i.e. B-cells) and that there are other cells which produce antibodies and are not removed by rituximab (plasma cells +?)? a subset of people with ME/CFS may...

Came across this study i.e. via Health Rising: Frontier studies on fatigue, autonomic nerve dysfunction, and sleep-rhythm disorder https://link.springer.com/article/10.1007/s12576-015-0399-y Role of sleep and circadian rhythm in fatigue recovery (Fig. 2) Sleep features in individuals with CFS...

Sure you're aware that @Simon M has pointed out that GWAS has suggested clues re Alzheimer's.

Not sure if I'm helping but check out @Caroline Struthers posts on the response she received from NICE. This is my memory and it's seems a little surreal. NICE appoints a panel e.g. to review the ME/CFS guidelines; I assume this "expert" group produces the draft guidelines and these are then...

It seems like you gave evidence to an expert group who grilled you - reasonable; i.e. basis for the revised NICE guidelines. It also appears that NICE have grafted another entity on - the folks who "interpret" the guidance/guidelines produced by the experts. Presumably they make the guidelines...

Yes I think this is key i.e. the length of time actimetry is conducted before an intervention (baseline) and post intervention i.e. to test whether there has been an improvement. @Invisible Woman I think this illustrates an obvious use of actimetry [from a review of PACE*]: "There was no...

Yea well if you report s--t in technical terms then it looks impressive: "Methods Forty-seven IBS-D patients were classified as having low somatization (LS = 19) or high somatization (HS = 28) according to the Symptom Checklist-90-Revised (SCL-90-R), (cut-off score = 63).---" How pray do you...

Let's say that a reasonable researcher was going to test whether CBT & GET had a positive effect for people with ME/CFS --- I assume that's what PACE was intended to do. Select people based on clinical assessment i.e. using diagnosis of exclusion (you aren't suffering from an identifiable...

@Caroline Struthers On the face of it this should be reported - to the Committee which oversees NICE/Department of Health or whatever. You can't publish something and then write a disclaimer saying --- however, the CKS do not represent formal NICE guidance. We commission it but it's not ours...