Science Media Centre with Holgate/Crawley/McCrone - more anti-patient prejudice? (FITNET)

[JoanDublin]

Lest anyone think there is any hope for MEGA or the CMRC....here is a doozy comment from Prof Holgate from the BBC link talking about the FITNET project

"Prof Stephen Holgate, from the Medical Research Council, said: "CFS/ME is an important disabling condition.

"It has been chronically underfunded for years, patients deserve high quality research like this."

So this is what he considers high quality research? Lordy lord.

Get signing OMEGA. Quick!

https://www.change.org/p/opposing-m...twitter&utm_campaign=share_twitter_responsive

 

[hixxy]

Guardian too.

Young people to get ME treatment in trial after success in Netherlands
https://www.theguardian.com/society...-syndrome-treatment-trial-success-netherlands

How convenient that the comments are disabled. At least the title isn't as much of a travesty as the BBC's.

 

[NL93]

 

[Kati]

I have no words.

 

[Wolfiness]

It's the top story on the BBC Red Button service. It makes me long for Trump to do something disgraceful to knock it off.

What is the 'sleep adjustment' they're talking about? I used to sleep from 10:30pm to 7am every schoolnight. Didn't make any difference.

 

[Sean]

Landmark chronic fatigue trial could cure two-thirds

Just like that other landmark "definitive" trial, PACE?

 

[ZeroGravitas]

Funny, in the "Health" sub section link to the BBC article the headline is toned down from "cure" to "treat":

Although I'm not sure if, or who, that's supposed to be a quote from. [Edit: ah, they've removed "cure" and the quote marks altogether now.]

Excuse me, coming at this pretty naive to the situation... So, even going by the original study's own (refuted) content, they should be saying something more like: might lead ~60% of adolescents with idiopathic fatigue to self report significant improvement fatigue and function within spitting distance of healthy controls up to a year sooner than those not undergoing online counseling and advice (with a fancy name).

BBC article:

"It is a scandal, what other condition would you leave a child with - undiagnosed and untreated?

[...] every day we are phoned by parents who are desperate to get treatment for their children."

Well yes, in the context, here in the UK... Where it takes years of repeated GP badgering, getting through exclusionary consultations that make you feel like you're wasting everyone's time, and then have zero treatment options... Yes, any option is going to sound "[...] really cool and really exciting.". (The treated patients themselves of course quoted only as having had help understanding their illness, not recovering per say.)

That's pretty appalling.

Prof Crawley is leading the FITNET-NHS trial, to see if online consultations work and are cost-effective for the health service.

It's the whole self defeating, top down austerity climate, atop of self defeating short-termism in investment choices. They're thinking: what is sitting there ready to go, that we can we put the minimum of funding into. The least imaginative, least progressive options. Like automatically awarding contracts to the lowest bidder, turning a blind eye to the fantasy of their magical figures, because any fall out and additional cost will land with the next set of bureaucrats, down the line.

And results not until "2022" made me gawp a bit. Especially right after all the excitement of the conference and the ~1 year time frame from Fluge for quite possibly totally upending the entire field of study with cornerstone (it's in the blood) findings.

https://twitter.com/i/web/status/792738214473830401

 

[PhoenixDown]

Young people may need counselling on their sleep patterns, for instance. Those with CFS sleep for a long time because of the fatigue, but that results in poor-quality sleep, which makes them more tired. One of the things the intervention attempts to do is reset their sleep patterns, so that they sleep less but better. That has a real biological effect, she said, changing hormones, appetite and mood.

It really doesn't sound like she's studying ME patients, chronic fatigue may be.

"It has been chronically underfunded for years, patients deserve high quality research like this."

So this is what he considers high quality research? Lordy lord.

I was just about to post the same thing, there's no way this is high quality research in to ME.

https://twitter.com/i/web/status/793267401953538048

According to that tweet the trial will cost £1,000,000, that £1,000,000 that could have gone in to real ME research.

Does anyone know anything about this Netherlands study that supposedly cured 2/3 of ME patients using online CBT?

Edit: I've just seen ZeroGravitas' post, so the CBT group were only 10% better than the Usual Medical Care group. Does anyone know what questionnaire was used to assess outcomes?http://forums.phoenixrising.me/index.php?members/zerogravitas.19816/

 

[CFS_for_19_years]

Does anyone know anything about this Netherlands study that supposedly cured 2/3 of ME patients using online CBT?

Edit: I've just seen ZeroGravitas' post, so the CBT group were only 10% better than the Usual Medical Care group. Does anyone know what questionnaire was used to assess outcomes?

Internet-Based Therapy for Adolescents With Chronic Fatigue Syndrome: Long-term Follow-up
Sanne L. Nijhof, Loudy P. Priesterbach, Cuno S. P. M. Uiterwaal, Gijs Bleijenberg, Jan L. L. Kimpen, Elise M. van de Putte
June 2013
http://pediatrics.aappublications.org/content/131/6/e1788.long

The primary outcomes of this study were the same as the outcome measures of the original FITNET trial and were as follows: (1) fatigue, as measured by the subscale “fatigue severity” (8 items) of the Checklist Individual Strength–20 (CIS-20; range: 8–56), which has good reliability and discriminative validity8,18,19; (2) physical functioning, as measured by the subscale “physical functioning” (9 items) of the 87-item Child Health Questionnaire (CHQ-CF87; range: 0%–100%)20; and (3) school attendance, measured retrospectively as the proportion of classes attended the 6 months before filling out the questionnaire, was expressed as a percentage of the normal school schedule. Considering that some of the adolescents were now beyond school age, the alternative primary outcome to school attendance was work attendance.

The secondary outcome measure was “self-rated improvement” (SRI), measured by using a 4-item tool in which patients can indicate whether they have completely recovered, feel much better, have the same complaints, or have become worse compared with the measurement before commencement of CFS treatment.8,10

 

[Snow Leopard]

More hype/spin/lies in the media.

To anyone involved in this research: patients are not critical of this research because it is a psychotherapy, we are critical due to the constant hype/spin in the media including lies by researchers that are not supported by the evidence. We saw it with the PACE trial, we're seeing it again with this trial. It seems you have learned nothing!

If you don't want to be criticised:

1. please use objective evidence of recovery in unblinded trials - do not rely on questionnaires that are easily biased in such trials.
2. Don't spin the results in the media

The fact remains that some researchers have done the very same psychotherapy research (eg Leonard Jason) don't receive much criticism. Why? Because they listen to patients needs and don't spin/hype their results in the media.

 

[Kati]

Once more, consider the timing of this press release. IACFSME just ended. Dozens and dozens of biomedical abstracts have been published on the internet. High likelihood that journalists will write about this conference.

Then, you know, now that the noise about the FOI data release have quieted down, good timing to reinforce that CBT and GET are the treatments for me, you know because the UK saves so much money by not offering medical treatments to ME patients.

 

[ZeroGravitas]

Once more, consider the timing of this press release.

Yes, it is a pretty stinky co-incidence. And of course the BBC just report as fact anything from incumbent powers that be, establishment, existing monopoly companies, etc, because that's their version of impartiality. Not allowed to be seen as at all anti-right-wing.

 

[loops]

Crawley's on BBC Radio 4 this morning.....Today Programme at 8.10. Not sure I can listen.

 

[Skippa]

Grrrrrrrrrrrrrrr

Went to BBC website, saw the headline, came here to vent, Ggggggggrrrrrr

 

[Wolfiness]

Yep the FOI didn't make their Red Button news at all, and this is the top story, ffs. No ME news has ever been a top story before as far as I remember.

 

[loops]

Crawley's on BBC Radio 4 Today Programme at 8.10 apparently......Can't bear to listen myself.

 

[Wolfiness]

Then, you know, now that the noise about the FOI data release have quieted down, good timing to reinforce that CBT and GET are the treatments for me, you know because the UK saves so much money by not offering medical treatments to ME patients.

I can't blame them for not offering them, I blame them for not researching them.

 

[Art Vandelay]

I'd suggest to the BBC that a more accurate headline would be: "Creepy Crawley lobbying for more funding from taxpayers".

Disgusting.

 

[Blue]

I am really amazed that the pure announcement of an online CBT trial (???) gets this much media attention. Normally the media reports actual results after a study is finished or they might cover a trial before it has even started because the scope or trial design is so innovative. Not the case here at all, so the behavior of the media gets even more mysterious.

 

[Cheshire]

Well, I didn't know what to think about Holgate.
Now I have very few doubts. His support to EC's work is very clear.
And there are too much worrying things in this whole CMRC project.

As for his will to collaborate with patients, is this how he intends to proceed? Using the SMC mass propaganda machine, who actively participated in the campaign to dismis patients' voices and concerns as vitriolic extremist claims?

God, I really don't understand this situation, this is utter madness.
How can this be taking place at the same exact moment when the Swedish and US conferences just happened?