Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
the trial was the largest of it's kind and it failed miserably so if it were a ship it would be the titanic.
I will give him one thing, he knows how to manage internet "persona" it is as if he hired an Internet image firm.Can't the internet ban Wessely for being a troll?
I can't delete my own posts or I'd have done it myself.
In two minds as to whether it would help or hinder on Twitter right now.@snowathlete, someone, can you tweet that titanic pic to the usual suspects?
I'm not twitter literate... or is that litter twitterate?
Anyway, this pic worth a thousand words.
Your posts there have been really good, for anyone reading into the comments (and the discussion is easier to read than the essay by Wessely), it gives good information.
Interesting to note that the company that produces this 'nationalelfservice' website asked me a few days ago if I was willing to take part in a live webinar on the latest PACE trial analysis next week
Interesting to note that the company that produces this 'nationalelfservice' website asked me a few days ago if I was willing to take part in a live webinar on the latest PACE trial analysis next week
This would include one of the other main (US) critics of the PACE trial and a member of the UK group that caried out the trial
I said I was very happy to do so
This webinar discussion has now been 'postponed' and replaced by a blog in defence of the PACE trial
I want to support his boycott.
I hope he'll ask for them to remove Wessely's article and publish an apology.
Incidentally, there are some interesting comments from people who took part in the PACE trial over on the MEA Facebook discussion on this blog from SW:
Incidentally, there are some interesting comments from people who took part in the PACE trial over on the MEA Facebook discussion on this blog from SW:
https://www.facebook.com/ME-Association-171411469583186/
There is something I don't understand about how the PACE trial is being reported. Reports say that there were 4 groups and all recieved some form of treatment but this isn't true. There was a group that received nothing and I know this because I was on the trial and in this group.
Wow.....it's just dawned on me that they are classing the group that got nothing as having received 'specialist medical care'......talk about spin. You got nothing, not even them saying 'ok your GP will do a review with you, see if any medication can help' which is the least I would expect to class this as a group that got 'specialist medical care'. This was not a group that recieved SMC much more accurate to say there was no intervention. Also I was not contacted for a 2.5 year follow up.
James Coyne makes reference to it on his twitter page.The US critic was presumably James Coyne. I thought he was just taking his ball in to little effect, but I can see why he was so furious now. Extremely shabby behaviour by Mental Elf.
James Coyne makes reference to it on his twitter page.
James C.Coyne @CoyneoftheRealm 2 hrs2 hours ago
.@Mental_Elf asked me to join PACE investigators in live debate. I agreed, they did not.
I've just joined James Coyne's boycott of Mental Elf and have asked for my earlier posts to be deleted, except for the one about the PACE petition.
(BTW, @charles shepherd, would the MEA put something about it on FB and their main site? 7,000 signatures now, with a 10,000 target [link in my signature])?
Coyne is right that Mental Elf's publication of this puff-piece is shameful.