E. Crawley: Time to end the damaging battle over chronic fatigue syndrome

[slysaint]

Are these the folk who will be the participants in FITNET and MEGA?

I know this was a rhetorical question but the fact that EC keeps telling everyone that 'CFS is very common' says it all.
And then that those who don't respond well to her treatment or have been ill for too long don't have CFS (or ME), also makes no sense. If anything these are the people who are more likely to have ME.

 

[TiredSam]

I know we have enough diagnostic criteria already, but perhaps we need one more definition - "Crawley CFS". I think the term would be useful so that we can distinguish between whatever it is she's talking about and ME. Then if she wants to study Crawley CFS she can, without anyone being confused that it has anything to do with ME. Now we just have to find a way to stop her using the name ME inappropriately when talking about Crawley CFS.

Which one is the MEGA study about again?

 

[slysaint]

Crawley CFS

http://forums.phoenixrising.me/index.php?posts/782675/
New disease Crawley Fatigue Syndrome

although this could be interepreted differently and apply to all of us

 

[SamanthaJ]

In recent years I have noted a change in the type of patient from the clinics who contact me.

... some of the people who contact me having been diagnosed with ME ........or rather CFS which they insist is the same as ME.............do not have any form of ME that I recognise. ( Well, they just don't have it.) Yet they are accepted and diagnosed by the clinics as having CFS and therefore ME.

The people who ring me who have ME are very considerate and anxious not to overload me, but the other folk are quite different. They ring me at terribly late hours and ignore my request that they do not do this. ..........and do it repeatedly . They are very demanding and do not understand what it is like to have ME. They clearly, to me, have been misdiagnosed with ME, and to be honest, they are now in the majority. ( One rang me on Sunday and demanded I came to her house and clean it for her! ) They are distressed and in need of help, of that there is no doubt........but they don't, in my opinion, have ME. This is clearly due to the failure of doctors to understand how to diagnose ME. Are these the folk who will be the participants in FITNET and MEGA?

That would explain some blogs I've seen, young people who identify as having CFS or ME, but talk little about physical symptoms and a lot about depression or anxiety. They seem really badly informed about the illness and don't seem to take exception to being sent for psychotherapy. I'm never sure whether to point them in the right direction with a comment, they usually don't seem to be inviting that kind of discussion. One even took comfort from her therapist saying it mostly affected perfectionists! Obviously, they are misinforming others, and may even be misdiagnosed.

 

[Countrygirl]

https://twitter.com/i/web/status/796399437589385216

These tweets contain some chilling information about Fitnet. Mothers are in danger of being blamed for child's lack of recovery. Scary!

Families need to be warned of this if they are thinking of participating.

 

[Barry53]

She told me that they had treated her with CBT and GET. and, as a result, she became much more ill, but instead of supporting her once she relapsed she was discharged and she is desperate to get back on their books so they can help her now her health has deteriorated. Apparently, they have refused to give her another appointment. It seems as if her deterioration as a result of their treatment is to be ignored by the clinic.

More likely they know why the lady got worse, and suddenly feel an urgent need to wash their hands of her.

 

[SamanthaJ]

https://twitter.com/i/web/status/796399437589385216

These tweets contain some chilling information about Fitnet. Mothers are in danger of being blamed for child's lack of recovery. Scary!

Families need to be warned of this if they are thinking of participating.

Couldn't bring myself to 'like' that - disgusting. You're right, families will be volunteering in good faith and need to know what could happen.

 

[worldbackwards]

https://twitter.com/i/web/status/796399437589385216

These tweets contain some chilling information about Fitnet. Mothers are in danger of being blamed for child's lack of recovery. Scary!

Families need to be warned of this if they are thinking of participating.

SMC were notably short on that. I wonder why Crawley didn't mention it on the BBC?

 

[TiredSam]

https://twitter.com/i/web/status/796399437589385216

These tweets contain some chilling information about Fitnet. Mothers are in danger of being blamed for child's lack of recovery. Scary!

Families need to be warned of this if they are thinking of participating.

The idea of children being separated from their parents and interviewed without a responsible adult / witness present is very concerning.

 

[Tom Kindlon]

https://twitter.com/i/web/status/799318904350838784

https://twitter.com/i/web/status/799413158095962112

 

[slysaint]

@sue la-la posted the link to this on the OMEGA thread:
it deserves a read:

The CUTT Trial (Crawley's Unusual Treatment for Tuberculosis)
Tuberculosis is a devastating illness that affects millions of people worldwide. Little is known about this disease. Investigation of the psychological factors is an immediate priority.
Methods: we rang 80 people at random, and asked if they'd coughed at any time in the last few weeks. Those who answered 'yes', were randomly assigned to a treatment group or a control group. The control group were instructed to stay on the phone for five minutes, to listen to classical music. The treatment group were instructed to answer a series of 10 questions about reality TV stars, using their telephone keypad.
One week later, we contacted each of the participants, and asked if their coughing seemed to be less frequent, or less forceful, compared to the previous year. We disregarded answers that indicated more frequent or forceful coughing.

Analysis: We carefully analysed 100 random factors, including astrological sign, postcode, last four digits of their telephone number, the day & month they were born, and their tendency towards false coughing beliefs. We found a strong association (p<0.005) between water-type astrological signs, false coughing beliefs, and the initial frequency & severity of coughing - and that this same group showed a marked improvement in the frequency & severity of their coughing through CUTT therapy.

Limitations: (a) Because of the lack of paperclips in our office, we were unable to do pathology tests for the tuberculosis bacterium. (b) We were unable to contact most of the control group for follow-up, so the results for that group were estimated, based on the 5 people who responded (and coincidentally still had a cough).
Conclusions: Tuberculosis can be cured by pressing buttons on your telephone. People with excessive emotions (water-type astrological signs) are more likely to complain of tuberculosis, perpetuated by false coughing beliefs. Laboratory tests for tuberculosis should be avoided as they will perpetuate false coughing beliefs.
Coming Soon: Statistical proof that this therapy for tuberculosis is more cost effective than traditional TB drugs.
BBC Headline: Tuberculosis Miracle Cure

 

[UKmum]

Just noticed this on the front page of AYME site
Professor Esther Crawley
invites you to her
inaugural lecture:
Fatigue and ME:
A story of research
in a controversial area

6:30pm on Friday 24 February 2017

at The Priory Road Lecture Theatre, Priory Road
Bristol BS8 1TZ

RSVP: julia.Andrews@Bristol.ac.uk

I might try and get along to this one.

 

[Barry53]

A story of research in a controversial area

That would be Bristol then?

 

[Esther12]

I might try and get along to this one.

To cheer her brave struggle to smear those patients who dare point out how serisouly she misrepresents the evidence?

Would be great to get a recording of this if anyone does go. Sounds like she's panning to continue digging (not sure she has any choice at this point) and the more we get on the record the better.

 

[ScottTriGuy]

Just noticed this on the front page of AYME site
Professor Esther Crawley
invites you to her
inaugural lecture:
Fatigue and ME:
A story of research
in a controversial area

6:30pm on Friday 24 February 2017

at The Priory Road Lecture Theatre, Priory Road
Bristol BS8 1TZ

RSVP: julia.Andrews@Bristol.ac.uk

I might try and get along to this one.

Great opportunity to confidentially invite the media to a protest against her.

 

[Esther12]

It used to be that performances by my favourite bands/DJs would leave me most desperate to be well. Now it's the chance to go and ask awkward questions at a professor's inaugral lecture. Just one day of good health is all I'd need for so much fun!

 

[TiredSam]

Fatigue and ME:
A story of research
in a controversial area

In this case, might not a protest be playing into her hands? ie, given the title of her lecture, she could merely gesture to any protesters and say to the audience "see, I told you it was controversial". On the other hand she shouldn't be allowed to get away with preaching any old tripe unchallenged. Glad I'm not in Bristol wrestling with the dilemma of whether to turn up with a coffee cup and a chair.

 

[sarah darwins]

In this case, might not a protest be playing into her hands? ie, given the title of her lecture, she could merely gesture to any protesters and say to the audience "see, I told you it was controversial". On the other hand she shouldn't be allowed to get away with preaching any old tripe unchallenged. Glad I'm not in Bristol wrestling with the dilemma of whether to turn up with a coffee cup and a chair.

I hear you, but on balance I'd say (peaceful) protest is warranted. The one who started the fight doesn't get to say when it's time to call a truce. Crawley and her predecessors barged into the lives of patients who never wanted them, caused havoc and untold misery, and now they're saying "Hey, guys, isn't it time we all worked together?" Well, bullshit. She and her pals have no place in the treatment of this disease or the lives of sufferers.

 

[slysaint]

Just noticed this on the front page of AYME site
Professor Esther Crawley
invites you to her
inaugural lecture:
Fatigue and ME:
A story of research
in a controversial area

6:30pm on Friday 24 February 2017

at The Priory Road Lecture Theatre, Priory Road
Bristol BS8 1TZ

RSVP: julia.Andrews@Bristol.ac.uk

I might try and get along to this one.

Is Julie Andrews going to be there?

 

[AndyPR]

Fatigue and ME:
A story of research
in a controversial area

Not that we really needed it but, to my mind, she's confirming to us what she is really interested in - fatigue. Why she is so focused on fatigue and ME is beyond me (no pun intended) as there must be more well funded fields where fatigue is also an issue. You'd think having to fiddle all your studies to get around the inconvenient biological aspects of our illness must get tiring after a while.