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Anyone got the follow-up info on this? A record of the communication and issues with the CCC (according to the author's views)? Which authors were contacted? Carruthers? From one of the PACE trial steering committee and data ethics committee meetings it states: From Monday 28th Sept 2004...

Aquatic exercise? Could it get any more dangerous? How many lifeguards per patient? I would be interested in how they respond to questions like whether they have a hoist to get people in and out of the water. I notice this is studying the "benefits" and not the effects. BPS model continues to...

What happened to doctor / patient confidentiality? I am totally alarmed by this Can anyone find the REC approval? Nothing comes up under the number when I looked, not even under the old name of Somerset REC. It seems pretty obvious that to prevent being in one of EC's "research" studies /...

Symptoms - see http://me-pedia.org/wiki/List_of_symptoms_in_ME_CFS for an extensive list - might be worth linking to from the page being created. Includes ICC & CCC plus long symptom list from CCC appendix Also - is the aim to cover ME only or ME & CFS?

Undeclared conflicts Gabrielle Murphy wrote a book on CBT self help during the PACE trial - first published 2009 - Didn't even both listing it as a possible conflict. She did declare "insurance reports"...

Just 6 months between the main PACE publication and Bavinton her Vitality 360 GET company. Maybe the HRA would claim it's not a conflict since she we don't know how much she earns? JB of course was on the NICE guidelines committee recommending GET before the PACE trial was published. And...

How pension & insurance companies use GET & CBT trial data to reduce payments a From a Patient: To Invest in ME http://investinme.org/Documents/Fact%20Sheets/Status%20of%20Research,%20Treatment%20and%20Perception%20of%20Myalgic%20Encephalomyelitis%202018.pdf “I have had M.E. for almost four...

How many protocols does this harmful GET trial need exactly? There's 5 on the website now. Is Action for ME supporting this street merging with AYME? They have a clear statement against GET now. Selected GPs are now sending out letters on behalf Crawley et al for any kids aged 11+. For 16 or...

Aside from the factual inaccuracies in that, they claim there is no evidence authors profited from their conflict of interest. - Jessica Bavinton is still running a private company offering GET, wonder how much she's made? - Trudie Chalder's book sales? - Gabrielle Murphy's CBT book is only a...

@Sly Saint A certain "JB" stepped down as vice chair. Mike Beadsworth was at the meeting and took an active part in it.

@Michiel Tuch The FOIA from the Countess was about the current guidelines and topic experts involved. The previous ones are already public (although I'm not sure if they were before the NICE guidelines were published). You can find the list in my post higher up from Sun 2:40am - Rosalind Raine...

@ScottTriGuy that was the source of his GMC complaint, the kids wasn't even his patient! What is disturbing is the way many defended him along with other dodgy doctors, especially Roy Meadows.

@Snow Leopard I believe it's TCAs that are not recommended for depression since the dose needed for that is likely to cause too many side effects. I seem to remember the International Consensus Primer suggests SSRIs for depression. Flouextine (prozac) was not effective in clinical trials for...

Certain anti-depressants (and several anti-convulsants or other neuro drugs) are already licensed for pain or used off label for pain. This is nothing new - but there's only a couple. The Canadian Consensus Criteria describes these best - based on expert experiences rather than CFS trials. link...

it's under the MS guidelines, history, scroll right to the bottom for very brief minutes for each meeting https://www.nice.org.uk/guidance/cg186/history

@Sly Saint can you confirm Mike Beadsworth is on the Executive of the BACME too? I'm sure I saw that recently. I know he was at the AGM. I don't know what other BACME roles he holds but I noticed they have a Liverpool & Mersey group, and he was "local host" at the Changing Times conference in...

Gabrielle Murphy wrote the ME Awareness post on May as Chair. If she has quit then I'd say it's purely for the NICE guidelines and does nothing to convince me that she is any less connected than before. Esther Crawley was chair when appointed to the last guidelines panel.

That's what I thought. Jonathan - I've read up on who is on their panel and read the research I could find. Alan Stanton is especially alarmingly (ban discharge against medical advice forms for kids, how to force treatment on under 18s who are Gillick competent while displacing parents rights)...

Is it possible to find out for sure who is commissioning the guidelines - if it's not IAPT then who? Do you know which National Collaborating Centre has the commission? I'm guessing now from what you said that is the Chronic Conditions one. Info from 2007 shows who was being the scenes, there...

https://www.nice.org.uk/about/what-we-do/our-programmes/nice-advice/iapt Hope 4 ME & Fibro Northern Ireland raised this in 2017 in the 10 year so report. That's where I got the link from. The new guidelines have been caked Myalgic Encephalomyelitis / Chronic Fatigue Syndrome but I can't tell if...