Esther Crawley blog (February 3): "Doing what is right in a controversial field"

[Dolphin]

(Not a recommendation)

http://www.nihr.ac.uk/blogs/doing-what-is-right-in-a-controversial-field/5370

 

[Dolphin]

She sounds biased.

Although treatment is effective,

A study published in the Lancet demonstrated how effective this could be in the Netherlands

Children need to know that their treatments are effective

In such a scenario, objective measures are extra important. They should use actometers to measure actual activity levels in this trial.

She fails to mention as she usually does that there was no statistically significant difference in recovery rates at long-term follow-up in the Dutch trial.

 

[halcyon]

She sounds biased.

Yes, it feels very reminiscent of PACE. She seems to already "know" the treatment works, the trial is just a formality to her.

There are a small group of people trying to stop the trial from proceeding.

I'm not sure if she's referring to MAGENTA or FITNET, but 4,200+ people signed the petition against MAGENTA. I'm guessing that is a much larger number than the number of people who "love" the treatment they get from her clinic.

And whether I should follow countless other CFS/ME researchers and leave the field.

If she can name even one serious biomedical researcher that left the field because of opposition from patients I'll eat my hat.

 

[Never Give Up]

And whether I should follow countless other CFS/ME researchers and leave the field.

Oh, please do! Do follow that imaginary pied piper right out of the real world where the treatments you imagine work don't! Hey, Crawley! Leave them kids alone! Take a, a , whatever, just go! Stop hurting those sick kids!

 

[Sean]

Although treatment is effective,


A study published in the Lancet demonstrated how effective this could be in the Netherlands


Children need to know that their treatments are effective

She fails to mention as she usually does that there was no statistically significant difference in recovery rates at long-term follow-up in the Dutch trial.

The long-term follow-up result is the main outcome for any treatment study.

No benefit at long-term follow-up = no benefit.

These scumbags really have no shame at all, do they. Been watching their shitty little act for 3 decades, and it still takes my breath away. They just sink deeper and deeper into their cesspit.

 

[ash0787]

Reminds me of this famous quote "
“Of all tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive. It would be better to live under robber barons than under omnipotent moral busybodies. The robber baron's cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end for they do so with the approval of their own conscience.” "

In other words we might be better off if the government ignored CFS entirely

 

[daisybell]

She really is amazingly self-satisfied and manipulative. Amoral.

 

[sarah darwins]

She really is amazingly self-satisfied and manipulative. Amoral.

Yep. I was struck by the tone of the piece and how it reflects the title — not "Are we doing the right thing?" but "We have no doubt we are doing the right thing and the only question is whether we should carry on in our selfless struggle in the face of such persecution from from the thankless masses (excluding my patients who all think I'm wonderful)".

Jaw-dropping hubris.

 

[Snow Leopard]

Doing what's right involves actually listening to patients and their needs... Not projecting what you think they need based on ignorance.

 

[trishrhymes]

I'm not surprised she's had letters begging to be involved in Fitshit after the huge media blitz claiming it as a cure. There are lots of desperate sick people out there.

Basically what she's saying is - tell a lot of lies - desperate people believe them - therefore they are not lies - and I'm a hero for telling them.

Sounds like a certain orange politician to me.

 

[user9876]

I'm not surprised she's had letters begging to be involved in Fitshit after the huge media blitz claiming it as a cure. There are lots of desperate sick people out there.

Yes she promised a cure before the trial even started. That of course won't bias the results!

 

[Jo Best]

It is stories like this that have kept me awake at night over the last decade.

Ohohoho... not the fact that you directed children to read publicity material for the non-medical intervention (LP) in your 'feasibility' study (in which the children taking part would undergo the 'treatment' you wanted to 'test') or the fact that you directed parents to give practitioners with no medical qualifications your child's personal medical details or the fact that you misled the ethics service etc. etc. Oh no, that doesn't keep you awake at night you charlatan. (apols for garbled rant, that was about SMILE trial).

 

[Jo Best]

 

[dyfalbarhau]

I think she's just astroturfing now for when people "suddenly" realise ME/CFS is something completely other than what she and her colleagues have said it is, and for her planned studies in the more short term.. "A small minority" opposes the research; she is motivated by a desire to help (especially children) in spite of controversy; she sincerely believes in this research and it is backed up by others; she (and a few other courageous souls) are the only ones who cared for so long.

etc.

Added with her now making the right sorts of noises about biology (I mean, not actually right, but she is using biology jargon at least) she will be poised to pivot herself from being the Queen of [BPS]CFS to being the Empress of ME.

She faced considerable challenge helping those poor, dreadful people, you know.

 

[aimossy]

Poor me I'm so good and wholesome. KEPT ME AWAKE AT NIGHT FOR A DECADE. Oh she must be so tired the poor thing. Could there be much more manipulative grandiose behaviour.

Is the pressure on and now resorting to dirty tactics with review of her study if it really is being properly reviewed. To save study or save face after complaints?

She just targeted a patient group making them out to be unreasonable and compared them with anti Vax groups tainting them all with the stroke of her own pen.

How is this fair? Patients can't have their own say on that site is that right? Who's judge and jury here?

I do wonder how this grandstanding is allowed on an NHS site freely viewed if the study is really being reviewed? And if it is how is this ethical behaviour? Can she be reported to an ethics committee?

Sorry for all the question marks it just blows me away that a health professional is allowed to behave like this on any level ( even though she continually gets away with it - yeah I know I know).

 

[Jo Best]

Quotes from notes of a recent meeting the Deputy CMO for England - http://www.investinme.org/IIME-Newslet-1701-01.shtml

Problems with FITNET were mentioned and Dr Radford was aware of this and stated that FITNET was being reviewed.

One concerning children and the deplorable state that exists as well as case studies of children badly affected by the way that the existing mentality toward ME is allowed to distort proper healthcare. In this document evidence was presented to the CMO of the way many families of children with ME are being harassed and subject to child Protection proceedings.
Though the establishment organisations have totally failed children with ME the harrassment is not, however, confined to vulnerable patients or their families either - as witnessed by this story.

 

[slysaint]

Still using the Saint Esther photo I see.........gazing up for approval on high.

She answered her own question why people oppose her and her methods:
"We need high quality trials to test treatments." I would add 'treatments that have not already been tested to destruction and found to be ineffective for ME patients'.

 

[aimossy]

Painting herself as a patients saviour along with that saintly portrait.

 

[Daisymay]

Flabbergasted......!

 

[slysaint]

"There are a small group of people trying to stop the trial from proceeding."

Let's look at that shall we?...................IiME and all it's staff and supporters, TYMEs trust staff, supporters and patients,
Countess of Mar and 'her group', a 'few' people on PR ( ), the 3,000 plus people who signed OMEGA..............

eta: any tweeters responded to this yet?