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

[snowathlete]

I think it's important to remember that this propoganda is not really aimed at us. They don't expect to be able to win patients over. It is aimed at the general public, at colleagues, at NICE and at funders (these must be our target audience too). The word from the BPS lot will be that "we offered an olive branch even though we were not at fault, we've tried to engage and unite the community but unfortunately a small vocal minority are just very self destructive and even though this research can help them these extremists continue to oppose what's good for them, oppose high quality research like this even though this field desperately needs more research, and unfortunately they rope in a lot of other unsuspecting fellow patients who are just fed a lot of fear and lies about us, and they sign these petitions also because they are not properly informed. It's really a very sad situation but we're determined to help these patients, even the ones that are against us...etc.".

 

[A.B.]

@snowathlete yes that might be what they're trying to do. Our response of course must be to continue to raise awareness of the PACE trial fraud and the continuous violation of the norms of good science by these people.

 

[TiredSam]

I'm not expecting that they will, but in theory there is nothing to stop them picking an appropriate cohort, using objective measures, show that CBT and GET is an absolute shocker and then say the MRC there are no treatments for this disease group, all we can offer is pacing so we must get more funding to do proper biological research. And then they could apply to do such research, and use sound methodology to show it was not just lip service. There really is nothing stopping them doing this, and this is what you would expect to see from researchers who were serious about progress into the disease.

Exactly the approach of the University Hospital in Berlin. Do lots of tests to exclude everything else, honestly tell the patient there's not much they can do except pacing, get on with the biomedical research. It can, and is, being done.

 

[snowathlete]

I am listening to this at the moment. It's as terrible as expected.

http://www.bbc.co.uk/programmes/p04cd54b

she is justifying fitnet by saying that fitnet cures quickly, and the only reason that the control group got well over time is that they were switched onto fitnet after a year

Wow, there really are glaring problems with each and every study of Crawley's that I've heard about. It would be interesting to see a summary of them all showing them all in one short document.

 

[snowathlete]

@snowathlete yes that might be what they're trying to do. Our response of course must be to continue to raise awareness of the PACE trial fraud and the continuous violation of the norms of good science by these people.

We certainly need to keep raising awareness of PACE but also these other studies, not just MEGA and FITNET and MAGENTA but also past studies that have massive problems with how they were conducted because these are being used to justify future study based on faulty evidence. PACE actually meant these other smaller studies went largely unchallenged previously.

 

[taniaaust1]

There is a kind of chasm that those with our kind of illnesses fall.

I recently had patches of inflammation and bleeding from my bladder. This was investigated by cytoscopy to check for cancer....apparently all was OK. After infection was also ruled out. I asked what could cause such symptons. Interstial Cystitis was mentioned but the doctor said not to Google it because it was a 'psychosomatic condition'.

Funny that your brain can cause your bladder to bleed.

Dont know you that us attention seekers are capable of doing miracles for attention.. Maybe next we'll learn how to spontanously bleed from the palms and feet and produce stigmata to look like Jesus.

 

[Wildcat]

.
Esther Crawley is VERY quiet about her SMILE Trial (Lightning Process for youngsters). She needs to be asked why it has not been published.
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She will have a slick and tricksy answer no doubt

 

[Ysabelle-S]

I think it's fairly obvious it's the public and other doctors, NICE, etc, they're aiming this at. I also think new ME sufferers, or parents of new ME sufferers, and patients who don't have contact with other ME sufferers are another group they're hoping to net, since they need victims. Sorry, I meant subjects, for their trials. They have lost the trust of the wider patient community.

 

[Ysabelle-S]

.
Esther Crawley is VERY quiet about her SMILE Trial (Lightning Process for youngsters). She needs to be asked why it has not been published.
.

Yes, that's interesting, isn't it.

 

[Sean]

I've been trying to do that for nearly 40 years @eafw, but here I am propped up on the sofa with cushions struggling now to cope with my ever-deteriorating health and pain. Where did I go wrong?

I know! It is obvious! It is a lack of moral fibre. Or as the wonderful Caroline RIchmond claimed in the BMJ in her ....remarkable............article on ME, my womb has wondered off. (I wish it would) (Remember that?)

I am sure you can relate to Caroline's reference to your illness eafw.

You girls and your wandering wombs.

Lucky you have us strong smart men to help you control it.

[puts on flak jacket and runs away ]

 

[chipmunk1]

Esther Crawley is VERY quiet about her SMILE Trial (Lightning Process for youngsters). She needs to be asked why it has not been published.

If LP had worked well they wouldn't need to do another CBT trial.

 

[A.B.]

I am listening to this at the moment. It's as terrible as expected.

http://www.bbc.co.uk/programmes/p04cd54b

she is justifying fitnet by saying that fitnet cures quickly, and the only reason that the control group got well over time is that they were switched onto fitnet after a year

@Jonathan Edwards is there a justification for doing this, or is it simply bad science that only serves to cover up a null result?

 

[worldbackwards]

You girls and your wandering wombs.

Lucky you have us strong smart men to help you control it.

[puts on flak jacket and runs away ]

If they've got a wandering womb, what have we got? Could we blame the whole thing on meandering testes?

I'd kill for a wandering womb.

 

[Sean]

Even more strange is the argument that because clinicians currently use behavioural approaches to treat it, we must secretly think it is psychological.

Well your cult has been openly preaching primary psychological causation for decades. So that might be why.

 

[Sean]

Could we blame the whole thing on meandering testes?

 

[AndyPR]

If they've got a wandering womb, what have we got? Could we blame the whole thing on meandering testes?

I'd kill for a wandering womb.

Travelling testes of course, everything is better with alliteration!

 

[Sean]

They are hoist on their own petard. All their damaging behaviour has come back to haunt them.

A big part of the case against them consists of simply pointing out their own words & behaviour over the years.

 

[Sean]

Gotta say that this is one of the sharpest, most focused, and funniest threads ever on PR.

I gave up counting how many times Crawley got hit for six, and I fell of my chair laughing.

 

[Cinders66]

I am listening to this at the moment. It's as terrible as expected.

http://www.bbc.co.uk/programmes/p04cd54b

she is justifying fitnet by saying that fitnet cures quickly, and the only reason that the control group got well over time is that they were switched onto fitnet after a year

Wow. Did you hear at the end her disinterest in finding drug therapy and saying kids & parents don't want medication? She hopes in 10 years to be able to subgroup and have more treatments which work for more, I get impression main big interest is in behavioral interventions Which is a worry, I mean why take a pill if the same results can be had over grueling years of restricting activity? I actually thought , given that he was a colleague, that the dr interviewed her quite well, saying why shouldnt patients ask questions or ask for data etc (framed as harassment by some). A worthwhile listen.

 

[Sean]

She's not coming around, she's just lying publicly to fool less well informed patients and uninformed public. Meanwhile, she rediagnoses severe ME/CFS cases as 'pervasive refusal syndrome' and subjects them to psychiatric sectioning and rehabilitative treatments.

Yeah, that's a bit of a giveaway, isn't it.