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

[Countrygirl]

Small trials are all this supposed CBT treated illness can raise funds to privately get going. Doesn't she wonder why?

Good point@Cinders66 .

She is standing in the way of research and responsible for prolonging the terrible situation of millions of people.

I sincerely hope none of the US groups get sucked into this.

 

[worldbackwards]

I would like to hear a discussion broadcast between Prof Ron Davis and Prof Crawley.

They never debate, you know better than that CG

 

[Cheshire]

They never debate, you know better than that CG

If someone like, say, Ron Davis or @Jonathan Edwards , replied to this article by saying: "OK, let both of us have a public debate", that would be a great test for her williness to end the battle. By pretending to open the debate, she is now in an incomfortable position to refuse.

 

[Large Donner]

This is the interviewer from this morning BBC programme, "Dr" Phillip Hammond. It so incestual its not even funny.

He describes himself as a comedian, doctor and broadcaster. He's definitely a comedian because no one takes him seriously as a doctor, its well know on the various TV shows hes been on.


http://www.drphilhammond.com/blog/contact/

Contact
My agent is Vivienne Clore at the Richard Stone Partnership. For enquiries about a booking, please contact Shelley Devlin in the first instance.

Address
The Richard Stone Partnership
3 De Walden Court
85 New Cavendish Street
London, W1W 6XD

Telephone
020 7497 0849

Facsimilie
020 7497 0869

Email

Vivienne Clore – vclore@thersp.com

Shelley Devlin – sdevlin@thersp.com





Advice
I can’t give any personal medical advice via this site.

I no longer work in general practice, and am now working as part of a specialist NHS team in Bath, treating young people with Chronic Fatigue Syndrome/ME. Details of the service we offer are here:
rnhrd.nhs.uk/page/85

Good advice on accessing specialist CFS/ME services and treatments available can be found via
•the AyME website (for people up to the age of 25) and
•the Action for ME website (for those over 25)



Good medical advice on the web

The NHS website is a good place to start but it’s vast and you’d be amazed how much is on there (almost too much to take in)

For accurate and up to date medical information, I recommend the NHS Clinical Knowledge Summaries at cks.nice.org.uk You can choose between a patient information leaflet or a ten-page dissertation with all the references.

For a competent dissection of today’s health scare, try the NHS Behind the Headlines pages

For embarrassing problems, there’s the excellent embarrassingproblems.com

To share other peoples experience of health and illness, there’s my all time favourite website, healthtalkonline.org

 

[ash0787]

Just listened to the bit I missed.


I guess she would insist that Whitney should be given CBT as that is the therapy that works. (no, we haven't had the results yet, but that is what they are going to prove.)

What does Janet think of this?

I would like to hear a discussion broadcast between Prof Ron Davis and Prof Crawley.

I don't see why that would be impossible, BBC have hosted similar discussions in the past,
if crawley is as much of a charlatan as I think she is though she will probably dodge it, however if she does that
what you do is go on TV saying that unfortunately our opponent has declined to discuss it, which makes the other side look bad.

 

[Countrygirl]

I don't see why that would be impossible, BBC have hosted similar discussions in the past,
if crawley is as much of a charlatan as I think she is though she will probably dodge it, however if she does that
what you do is go on TV saying that unfortunately our opponent has declined to discuss it, which makes the other side look bad.

These were my thoughts too.

Has anyone got the contacts to set this up?

 

[Countrygirl]

If someone like, say, Ron Davis or @Jonathan Edwards , replied to this article by saying: "OK, let both of us have a public debate", that would be a great test for her williness to end the battle. By pretending to open the debate, she is now in an incomfortable position to refuse.

Especially as she has said on the BBC that Prof Davis and other are wasting their time and are not adding anything to the the world's literature. (still can't believe she said that)

They deserve a right of reply to this. She is demeaning their professionalism on air just as she maligns us.

 

[Large Donner]

I don't see why that would be impossible, BBC have hosted similar discussions in the past,
if crawley is as much of a charlatan as I think she is though she will probably dodge it, however if she does that
what you do is go on TV saying that unfortunately our opponent has declined to discuss it, which makes the other side look bad.

There simply no need for the BBC in such issues we could propose a host of people who could debate her on google hangouts or youtube and neither person would even have to leave their houses. This way the BBC couldn't maintain editing control to frame the debate their way.

The full copyright would then belong to the publisher of the video and it could be shared a million times on the internet and sent to media outlets like the BBC etc. Simply pleading to the establishment to film or record two people will not work in my opinion and it would offer only a framed discussion with zero time for readdressing falsehoods or spun claims. She would just use the opportunity to roll out the usual sound bites and harassment claims aided by either an ill infomed or insider interviewer and would go unchallenged on most issues.

Lets see it happen on google hangouts. Tuller versus Crawley. No way she would do it though.

Even so she could be sent an invitation to debate it online whilst being informed that the purpose of the video will be to scientifically scrutinise her claims, the PACE trial, fitnet etc etc and she can either come and defend them or not, either way the video will be happening.

Its really time we used video social media and produced our own interviews we simply don't need the BBC or any other media outlet in their current form.

We simply send her an invitation to come and explain the data, the definitions the change of protocols, the criteria etc etc from both the PACE trial and the Dutch Fitnet trial. If she is so sure of their efficacy she will be able to answer simple questions on them. We could send her critique of the trials in advance in writing and explain that we are deeply concerned that they are misleading. At least that way its on the record that she has been informed of the problems and is ignoring them.

Its time for us to start doing good PR.

 

[Countrygirl]

If she refuses, maybe Dr Phil Hammond will debate.

perhaps we have some expert patient who would join him for a discussion.

 

[Countrygirl]

There simply no need for the BBC in such issues we could propose a host of people who could debate her on google hangouts or youtube and neither person would even have to leave their houses. This way the BBC couldn't maintain editing control to frame the debate their way.

The full copyright would then belong to the publisher of the video and it could be shared a million times on the internet and sent to media outlets like the BBC etc. Simply pleading to the establishment to film or record two people will not work in my opinion and it would offer only a framed discussion with zero time for readdressing falsehoods or spun claims. She would just use the opportunity to roll out the usual sound bites and harassment claims aided by either an ill infomed or insider interviewer and would go unchallenged on most issues.

Lets see it happen on google hangouts. Tuller versus Crawley. No way she would do it though.

Even so she could be sent an invitation to debate it online whilst being informed that the purpose of the video will be to scientifically scrutinise her claims, the PACE trial, fitnet etc etc and she can either come and defend them or not, either way the video will be happening.

Its really time we used video social media and produced our own interviews we simply don't need the BBC or any other media outlet in their current form.

We simply send her an invitation to come and explain the data, the definitions the change of protocols, the criteria etc etc from both the PACE trial and the Dutch Fitnet trial. If she is so sure of their efficacy she will be able to answer simple questions on them. We could send her critique of the trials in advance in writing and explain that we are deeply concerned that they are misleading. At least that way its on the record that she has been informed of the problems and is ignoring them.

Its time for us to start doing good PR.

I like it.

 

[wastwater]

I never comment on these political posts because there so absurd and wrong its a farce.

 

[Countrygirl]

I never comment on these political posts because there so absurd and wrong its a farce.

How is this absurd?

What do you suggest is the way forward?

 

[Cheshire]

I never comment on these political posts because there so absurd and wrong its a farce.

Well, you should have followed your line and abstain...

 

[Countrygirl]

https://www.mentalhealthtoday.co.uk...sical-health-conditions-to-be-rolled-out.aspx

Psychological therapies for people with long-term physical health conditions to be rolled out

News, 20th October 2016.

The first stage of delivery of expanded psychological therapies in primary care for people with long-term conditions such as diabetes or chronic obstructive pulmonary disease (COPD) has been announced by NHS England.

NHS England has awarded more than £11 million in 2016/17 and some £24 million in 2017/18 to fund 30 clinical commissioning groups to improve mental health care for patients with long-term conditions through 22 different psychological therapies schemes. They are expected to start seeing patients beginning within the next three months. This to kick start the commitment to fund an extra 3,000 mental health therapists in GP practices.

Many people with anxiety disorders or depression also have a long-term condition like diabetes or COPD. A pilot showed that treating people’s physical and mental health problems in an integrated way can lead to better outcomes improving both people’s mental health and their management of their long-term condition.

The initial focus will be on long-term conditions where the evidence of impact is strongest: diabetes, respiratory disease and cardiovascular disease. Some will help people with cancer, and medically unexplained symptoms such as chronic pain and chronic fatigue syndrome.

Simon Stevens, chief executive of NHS England, said: “The NHS needs strong primary care services, and… we're taking further practical action to provide GPs with modern surgeries to work from, expanded staff to offer their patients a wider range of mental health care. We meant it when we said GP services are the bedrock of the NHS, and we're backing that commitment with concrete action to deliver the GP Forward View."

Earlier this month, NHS England also announced that in January 2017, a nationwide, £19.5 million NHS GP Health service will be introduced to improve access to mental health support for GPs and trainee GPs.

email this article
Comments
Newest first Oldest first

Coincidence?

Edited to add that I have read that there is a plan to provide internet CBT to sick people out of work. The argument is: people in work are much healthier than sick people out of work; therefore we must strive to get sick people back into work so that they enjoy the same health benefits. 'We must end the health-benefit discrimination suffered by sick people when out-of-work and to help them we are going to provide internet CBT as we are so caring. ( My grey cell hurts.)

 

[Snow Leopard]

Coincidence?

No.

 

[Snowdrop]

I never comment on these political posts because there so absurd and wrong its a farce.

I read it to mean that wastwater thinks the 'they're absurd and wrong' as being the BPS group.
At least I hope so. Always tricky when pronoun used to stand in for the noun.

 

[TiredSam]

I'm not sure a public debate is a good idea. People like Wessely can be very witty, charming and engaging in a public debate, amusing and blinding the audience whilst ignoring all the issues. Same could be true of Crawley. Why give her a platform on her territory? It would be a tough job for her opponent even with all the facts and science on their side, do we have anyone that savvy on the live public debating front? Well-considered articles and comments are what we're good at.

I've noticed during this media blitz that much of their PR has been as a result of calling in favours from personal contacts. It's not as if these stories are appearing in every media outlet, just the few where someone knows someone. Are they scrapping the bottom of the barrel now? How long can they keep doing that for?

It's tempting during a media blitz like this to imagine that they have an evil masterplan, but in the past it's been shown that they are not as powerful as they thought, and the aftermath of such attempts to retain their hold on our illness has recently been that they end up shooting themselves in the foot and looking stupid yet again. EC is all over the place at the moment, in more than one sense.

 

[Jan]

Many might disagree with me, but I really do think they are concerned they may not be able to find 12000 patients willing to participate in MEGA.

 

[Large Donner]

Many might disagree with me, but I really do think they are concerned they may not be able to find 12000 patients willing to participate in MEGA.

Surely there are 12000 people in the country with a telephone they can survey over the phone about fatigue?

 

[Barry53]

This statement ...

Yet progress on this illness is being hampered by controversy, with some people disputing both its cause and treatment

... seems a bit weird, given this statement ...

We know almost nothing about chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME)

EC evidently does not consider herself one of the "We" - is she claiming clairvoyance as another proffessional skill? And I am sure it is just oh-so-coincidental that her "chronic fatigue syndrome" link jumps to an article headline shouting "Cure: Can the power of our minds help us heal ourselves?" Weird combination of subtlety and blatancy.