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It's not a bad idea. I did leaflet a conference that IM was involved with which was shortly after their Guideline was presented to the APPG. They approached me and asked me to leave. They did however, allow me to enter and put my leaflets on the desk with other information for the conference. I...

It's been a while now. He's a description by Prof Malcolm Hooper on a talk by Chris Clarke in 2001 " Address by Chris Clark Chief Executive of Action for ME - Aug 15th 2001 ... He was quite happy with the confusions surrounding the use of both ME and Chronic Fatigue Syndrome, CFS, and...

Thank you. I've given it a try from here. Both files were from a group that I belonged to at the time of the last Guideline and may have the odd comment from the original contributor but I've tried to remove them first.

and if you want something included but don't have any evidence, then just argue this (from the Behavioural subgroup) "Concerns were raised that interventions/therapies without evidence base are not ignored. As they are currently being used, it would be better to address them Page 4 of 12 rather...

Patients may not agree with the recommendations but tough - we followed NICE methodology "Commented that psychiatric bias is part of a historical ideological debate. Most patients are just interested in getting better and the GDG should provide a robust response to these comments in the GDG’s...

and specifically argue against strategies that some patients do find useful "Strategies for which there are no evidence include • those which encourage maintenance of activity levels at substantially less than full capacity in order to have reserve energy for the body to heal itself (can be...

and of course we need to warn people about bed rest "It was suggested that the harmful effects of bed rest should go into the guideline before a diagnosis is made. It was noted that it is evidence based and it was agreed that it should go into the guideline." and "Recommendation 29 Discussion...

and no mention of any problems with this class of antidepressant "(Question 2d) The use of Tryicyclics The group agreed that Tryicyclics are good for pain and sleep."

I have a copy of a NICE questionnaire that is dated 2006 on my system. There is an alarm going off in my brain somewhere regarding problems with the questionnaire(s) at the time. If I remember more will post again. Getting an error message to say that I can't upload the files here. One is XLS...

I'm copying similar things from the minutes as I go through them and trying to group into one post

Dilute down any evidence you don't like into meaningless and misleading statements "It was agreed that it should be combined into one evidence statement as follows: “ Surveys of patients {largely but not exclusively from patient groups} carers, HCPs and others report mixed findings regarding...

Make sure participants are uncomfortable and cannot hear proceedings "Venue XX venue comments? Sound? Other room? Microphones? XX we can look into lapel mic’s for some people."

Limit access to published papers so members of the GDG don't get to read them. Limit requests by members of the GDG for more information due to "lack of time". "Graded Exercise XX Can we access more details about the definition of Graded exercise? XX We can try to get as much info that is in...

How to limit the evidence even further. Accuse authors of bias to try and discredit papers on thing you don't want included. Obviously that does include CBT and GET "3/6 of good studies failed to distinguish CFS/ME from others. 3 were head up tilt test, but all were from authors who developed...

Muddy the waters by introducing somatoform disorders "Thank you for finding this paper – written by a GP on somatoform disorders. We are still proceeding without a proper definition of what CFS/ME is and what causes it. We need to look at things in different ways to understand what is going...

Ensure that your patient reps are overloaded and may have to leave just when it gets interesting. Then split into 3 groups with only 2 remaining patients left "BREAK [Note XXXXXXX needed to leave the meeting at this stage to rest –rating of evidence statements will be done electronically post...

and keep pushing all through the guideline development process that there is a one unified "professional view" that is opposed to what patients experience but is still correct of course " Is there a ceiling effect? – CFS/ME community say there is an underlying illness this puts a ceiling on...

And obviously this only applies if it is CBT or GET "Our job is to try and identify a range of treatments that may be helpful. They are not/should not be mandatory for patients to take them up. Just because we they don’t suit everyone does not mean they do suit some."

Not sure if this made it through to the end Guidelines and if it didn't - why not? "There are several papers that say that people who have been severely affected for 5 years have little chance of recovering. This is not about just chronic fatigue there are other symptoms. While you may get an...

Explain away harms of CBT and GET as being justified "When evaluation medical trials: a) expect to see some harm but that doesn’t mean there isn’t benefit." and justify lying to them over risks and exaggerate benefits using this thinking "Patients need to believe that the treatment is useful...