• 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 (FM), 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.

James Coyne standing up for pts with ME like no one else

Kati

Patient in training
Messages
5,497
This:

PEQLECSa_normal.jpg
James C.Coyne (@CoyneoftheRealm)
2016-01-29, 3:09 PM
Leading trolls? Really, I was just standing up to @KingsCollegeLon and @WesselyS and people got behind me. youtube.com/watch?v=YeFzeN…



And this:

PEQLECSa_normal.jpg
James C.Coyne (@CoyneoftheRealm)
2016-01-29, 7:36 AM
Educative experience for me to see how I'm treated by Brit academics who were my friends until I criticized PACE. twitter.com/MEMilitant1/st…

If you want to help, like and retweet James's posts. Comment on his blog posts, go on facebook and share his stuff. He is working on a new blogpost about PACE trial.
 
Last edited:

Snowdrop

Rebel without a biscuit
Messages
2,933
The most effective retweeting is when you use a specific twitter handle of the person you wish to see the comment.
Otherwise we are mostly retweeting to the choir.
Put a period (.) in front and everyone will see the tweet along with the specific person.
 
Messages
13,774
Great to see. Very grateful to Prof Coyne.

Also though, someone like David Tuller put in masses of work on his PACE articles. I can totally take for granted @Jonathan Edwards contribution as he posts here so regularly he just feels like another member of the forum... we're lucky to have a growing number of strong advocates from outside of the patient community who have been willing to work on our behalf. Don't mean this to sound remotely churlish in a thread on Coyne, but also don't want people to get the impression that Coyne is unique in standing up for us.
 
Last edited:

Kati

Patient in training
Messages
5,497
The most effective retweeting is when you use a specific twitter handle of the person you wish to see the comment.
Otherwise we are mostly retweeting to the choir.
Put a period (.) in front and everyone will see the tweet along with the specific person.
Yes and no. It depends who your audience is, who your followers are..it is best to expand your horizons and follow, be follwed by politicians, wider health care audience, professors, and so on.
 

Kati

Patient in training
Messages
5,497
Great to see. Very grateful to Prof Coyne.

Also though, someone like David Tuller put in masses of work on his PACE articles. I can totally take for granted @Jonathan Edwards contribution as he posts here so regularly he just feels like another member of the forum... we're lucky to have a growing number of strong advocates from outsider of the patient community who have been willing to work on our behalf. Don't mean this to sound remotely churlish in a thread on Coyne, but also don't want people to get the impression that Coyne is working alone on our behalf.

At this point, work from all kinds of background, in all kinds of ways is much appreciated.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
It's easy for someone to follow and then mute your tweets when what they want is for you to follow them.
Hard to know if this happens but I wonder.
I haven't been able to get politicians and people in health care to follow me.
I do however have other interests and get followers from there.

But from what I can tell many of us have a limited ability to gain a lot of followers outside the community and in most part I was thinking of people who don't really want to hear from us or sometimes a well placed tweet to a media agency.
 

Kati

Patient in training
Messages
5,497
It's easy for someone to follow and then mute your tweets when what they want is for you to follow them.
Hard to know if this happens but I wonder.
I haven't been able to get politicians and people in health care to follow me.
I do however have other interests and get followers from there.

But from what I can tell many of us have a limited ability to gain a lot of followers outside the community and in most part I was thinking of people who don't really want to hear from us or sometimes a well placed tweet to a media agency.

'Building an audience' takes time, patience and retweeting other people's tweets, and engaging with them. Attending tweetchats pertaining to health care can be very valuable and help engaging with the wider community. there is a spooniechat, rheum chat, health care social media chat, health care leader chat. Participate and engage others, and perhaps friend people with whom you connected a bit or you'd like to follow because you liked what they had to say. You never know in which way these folks could be helpful.
 

A.B.

Senior Member
Messages
3,780
Why is the psychology and psychiatry establishment (largely) failing to challenge the Wessely school and its bad science?

1. Is it that they don't reading the studies, know nothing about the topic, and just take Wessely school's word that PACE is one of the most beautiful behavioural trials ever?

2. Is it because there is a critical mass of incompetence?

3. Is it because there is a culture of fraud that the establishment doesn't want to change? With the thinking being that if PACE goes down, other studies will also quickly go down?

4. Is it because voicing criticism has serious consequences for one's career?

5. Is it because the UK is small and everyone with remote interest in the topic is in the same circle of friends?
 
Last edited:

Kati

Patient in training
Messages
5,497
Why is the psychology and psychiatry establishment (largely) failing to challenge the Wessely school and its bad science?

1. Is it that they don't reading the studies, know nothing about the topic, and just take Wessely school's word that PACE is one of the most beautiful behavioural trials ever?

2. Is it because there is a critical mass of incompetence?

3. Is it because there is a culture of fraud that the establishment doesn't want to change? With the thinking being that if PACE goes down, other studies will also quickly go down?

4. Is it because voicing criticism has serious consequences for one's career?

5. Is it because the UK is small and everyone with remote interest in the topic is in the same circle of friends?
Or maybe is it because of the open and covered power that the british psych lobby has?
 

John Mac

Senior Member
Messages
321
Location
Liverpool UK
Why is the psychology and psychiatry establishment (largely) failing to challenge the Wessely school and its bad science?

1. Is it that they don't read the studies, know little about the topic, and just take Wessely school's word that PACE is one of the most beautiful behavioural trials ever and that CBT and GET work?

2. Is it because there is a critical mass of incompetence?

3. Is it because there is a culture of fraud that the establishment doesn't want to change? With the thinking being that if PACE goes down, other studies will also quickly go down?

4. Is it because voicing criticism has serious consequences for one's career?

5. Is it because the UK is small and everyone with remote interest in the topic is in the same circle of friends?
A huge chunk of no. 5
A dollop of no. 4
and a bit of no.1
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
@A.B. - follow the money ...

I was trying to find out how many CBT practitioners there are in the UK the other day (surely more per capita than anywhere else on earth). Couldn't find out, but found an interesting article in the Mail from 2006 that gives a hint. It was written at the time when Tony Blair's "Happiness Tsar" Richard Layard (now Baron Layard, don't ya know) was almost fanatically rolling out CBT like there was no tomorrow. His plan was to train 10,000 CBT-oids.

I don't know how far that got, but I do know the British Association for Behavioural and Cognitive Psychotherapies claims more than 10,000 members — and that's a professional body for those who want or require accreditation. That wouldn't scratch the surface of all those who have had CBT training of some sort.

http://www.dailymail.co.uk/health/article-412252/Therapy-NHS-What-crazy-waste-600-million.html

The Mail were estimating £600 million for CBT services in 2006 (call it a round billion dollars).
 

beaker

ME/cfs 1986
Messages
773
Location
USA
@A.B. - follow the money ...

I was trying to find out how many CBT practitioners there are in the UK the other day (surely more per capita than anywhere else on earth). Couldn't find out, but found an interesting article in the Mail from 2006 that gives a hint. It was written at the time when Tony Blair's "Happiness Tsar" Richard Layard (now Baron Layard, don't ya know) was almost fanatically rolling out CBT like there was no tomorrow. His plan was to train 10,000 CBT-oids.

I don't know how far that got, but I do know the British Association for Behavioural and Cognitive Psychotherapies claims more than 10,000 members — and that's a professional body for those who want or require accreditation. That wouldn't scratch the surface of all those who have had CBT training of some sort.

http://www.dailymail.co.uk/health/article-412252/Therapy-NHS-What-crazy-waste-600-million.html

The Mail were estimating £600 million for CBT services in 2006 (call it a round billion dollars).
"FOLLOW THE MONEY"

Reminder : It's not just the money for CBT, it's the research money.
And what I wonder most about is all that Disability Co. (Unum and Swiss something ) money for being their advisors. That seems the shadiest and where the most money is to lose, so the biggest source of corruption ?
Not trying to get all conspiracy theory on you. But we already know the UK Wessley/Sharpe cohort have been ( are still? ) getting paid as consultants.