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I think @JohnTheJack could make a strong case that QMUL’s response to his request has been vexatious. I find it inconceivable that the raw data was stored in a database or spreadsheet without each participant's data aligned or identified by a code number (like Jack did). As the new data is not...

Dear Jonathan, Thank you for your remarks, I also agree with a lot of what yourself and others have said on this topic, though I find it interesting that I seem to be coming from a perspective where our views do not automatically meet. I assure you that I am not hanging on to an argument, to...

Adrian, I agree with most of what you write and have written along these same lines myself. But your conclusion is not completely sound to me because it implies that subjective measures are unreliable per se. There are some huge discrepancies between the POM's and the walk test data, and other...

Maybe, maybe not. If it is accepted as given that the PACE trial disproves GET and CBT all well and good. I do not get the impression that it is accepted, but please correct me if I am wrong. As I have explained, if the PACE trial was withdrawn completely, it would not guarantee that GET and...

Hi Trish and Graham, the horizontal of the chart is the count of individual participants. As I remarked, each diamond represents an individual participant. I think what made it confusing is that all the participants were sorted left to right with those with the lowest amount of change on the...

Dear Sasha, I accept what you say, the problem is finding the time and energy. I had no intention of contributing to a substantial stakeholder response to NICE. I never even meant to write one for the Lyme guideline or all the BMJ rapid responses I have written since. But the situation is...

Dear Adrian, did you look at the charts? They represent actual data, not how it was interpreted or reported, but how it actually is. It has nothing to do with reporting bias. I am disappointed (and in fact find it unlikely) that anyone involved in campaigning would be unaware of the...

Dear Adrian, when I obtained the raw data from the PACE Trial I wanted to analyse it in my own way without external influences directing my attention one way or another, quite aside from the fact that it was impossible to find anyone with M.E. willing to help. So in keeping with my preferred...

To illustrate my previous points here are a couple of charts which show CHANGES to the primary outcome measures for every PACE participant with data. Please don't let this worry you, none of this data withstands critical scrutiny, but it does show what White et al have succeeded in defending...

Dear Graham and Barry and Rick and Jonathan, will try to answer all at once as rather tired. The reason that I have kept away from other people's analyses of the PACE trial recently, is because I have done my own independent review and if I can get it published, do not want to be accused of...

Thank you Barry! When the PACE trial arms are assessed as groups, a tiny difference is found for GET and CBT. In groups, this difference is insignificant and far below the 'minimum detectable change' thresholds. An effect of moving the Primary Outcome Measure thresholds, was to isolate and...

Dear Jonathan, this is just my take: 'political sophistry' is when I am insincere, self-censor and am selective or dishonest in order to sway or manipulate a group or situation for my own ends. Like I said, IMO there is nothing inherently wrong with it. I just don't care for it and try not to...

I think you make a good point Adrian. I add these remarks. One is that M.E. was 'diagnosed' by a criteria which according to Williams had not been validated, and certainly when compared with the ICC looks very shaky. The claim that there was no difference by criteria cannot be verified...

Thank you for your reply. People with ME are surely lucky to have some advocates who are well versed in political strategies, who know how committees work and how they can be manoeuvred with the best of intentions. The VIRAS approach (and my personal approach) has been to base arguments on the...

Hi Sasha, what is 'OI' please?

Many thanks to Adam. The Outcomes section now looks like this: “‘Main Outcomes” The list omits the following objective measures: · Return to employment or study, (or increase in work/study hours per week) · Change in sickness and disability benefits · Change in social services...

Dear Adam, I think you have a good point and I will add: return to employment or studying, (or increase in work/study hours per week), transferred off sickness benefits, resumption of pre-illness activities and sports. If anyone can think of others, please let me know.

Thank you Jonathan and others who replied. It is for the very reason that I want to be sure that the VIRAS response is in the interests of PWME that I made our comments public before submitting them, so that I could get some feedback. Thus far cautionary feedback is far outweighed by...

Dear All, here is a draft of the VIRAS response to the NICE draft scope. I would be glad to hear if patients/advocates have any objections as I am not entirely up to speed with the M.E. situation, though I note that in recent news that in some other European countries there is a disturbing...