Molly98
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Does anyone know if this a usually a phone in show where listeners can comment?
E. Crawley: Time to end the damaging battle over chronic fatigue syndrome
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Countrygirl
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http://www.bbc.co.uk/programmes/p001d79q
It claims to be the only place where you can speak to a GP on a Saturday. Not sure if that refers to Esther though. Maybe you could even ask her help for your ME? Now wouldn't that be nice?
They don't have to go to every conference. However what you are saying relation to the GMC breaches is correct. EC and PW have seriously breached much of the GMC rules. If you want to complain to the GMC I am sure people on PR would help with this.
Ysabelle-S
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Good opportunity to phone in and talk about PACE fraud which she is ignoring.
Countrygirl
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EC is well protected at the moment. GMC complaints are not effective.................yet.
Stewart
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Yeah, I was just typing something to this effect. No-one should expect Dr Hammond to ask his boss any difficult questions tomorrow...
AndyPR
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Also remember that, if you haven't already, you can sign the OMEGA petition https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
With Crawley as the ME expert I hate to think how MEGA is going to end up and that thought would be enough for me to sign it if I hadn't already.
With Crawley as the ME expert I hate to think how MEGA is going to end up and that thought would be enough for me to sign it if I hadn't already.
Countrygirl
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Dr Philip Hammond
I trained as a GP and worked as one for 20 years before retraining as an associate specialist in the young people's specialist Chronic Fatigue/ME service at the Royal National Hospital for Rheumatic Diseases NHS Fountation trust in Bath ............under the leadership of Dr Esther Crawley. I also work as stand up comedian . I am a longstanding campaigner for compassion, safety and transparency in the NHS,Patients First and Kissing It Better.
I work under Esther Crawley as a stand up comedian for transparency in the NHS.
Not sure where the kissing it better fits in though.
I trained as a GP and worked as one for 20 years before retraining as an associate specialist in the young people's specialist Chronic Fatigue/ME service at the Royal National Hospital for Rheumatic Diseases NHS Fountation trust in Bath ............under the leadership of Dr Esther Crawley. I also work as stand up comedian . I am a longstanding campaigner for compassion, safety and transparency in the NHS,Patients First and Kissing It Better.
I work under Esther Crawley as a stand up comedian for transparency in the NHS.
Not sure where the kissing it better fits in though.
Now Hammond can't plead ignorance of CBT/GET PACE Fraud.
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alex3619
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You forgot the superglue and duct tape. Its not enough to pull yourself together, you need those to hold it together afterwood. Obviously.
Countrygirl
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Unfortunately there are a great many people it does seem to work on. I do not think we know how to play that game properly.It hasn't worked on me, I'm afraid.
snowathlete
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What I see lately is what we have seen before - they adapt to the times and the criticisms, changing their narrative to make what they are doing sound reasonable to those unfamiliar with the details, while portraying critics as unreasonable and they try to make their efforts sound authentic, including making it sound compatible with biological etiology or even continuing biological processes. But these are only words.
What never changes are the types of treatments, the avoidance of objective measures, the poor methodology of research, the poor analysis and spinning of results, the denial of even the possibility of harm, the ignoring of all evidence that goes against the treatments they want to promote, claims stated as if they are fact that are not proven by the evidence. No matter what the narrative, these are the telltale signs of poor quality research that deliver no actual benefit to patients, and that is why patients will not stand for it.
There has also been change in the patient community in the last few years that ultimately mean this kind of thing is not going to be allowed to continue without challenge as it largely was before. Patients are not going to accept it and will increase their efforts as much as is needed to bring a stop to it. Patients know their only chance of getting better is through genuine high quality biological research and in combination with that doing away with the kind of nonsense that holds it back.
Patients have also abandoned their fear of being smeared, because they realized that we get bad mouthed anyway, and there is no way past the fire but through it. In fact, the more they have to resort to trying to make patient critics look bad the more we know that we are winning by exposing what is really happening; so it actually gives us strength. Outside academics and journalists have got involved and together we are exposing and challenging dodgy research in peer-reviewed journals, in the press and with authorities. Patients are protesting and these movements are growing and becoming more organized. There has been so much spin and propaganda that patients, and patient-organizations have got wise to it, have developed skills at spotting it, and are challenging it.
The easy old ways are gone. The real question now is can researchers who have spent years carrying out poor quality research along the lines of PACE truly adapt to produce worthwhile research that meets the standards that are now expected? I think the answers is likely no, but if that is the case I see their position in the field of ME/CFS becoming more and more difficult every year and it won't be long until the funding dries up entirely for the types of research that have enjoyed many easy decades where it was possible to get away with producing wasteful nonsense. Those days are gone.
What never changes are the types of treatments, the avoidance of objective measures, the poor methodology of research, the poor analysis and spinning of results, the denial of even the possibility of harm, the ignoring of all evidence that goes against the treatments they want to promote, claims stated as if they are fact that are not proven by the evidence. No matter what the narrative, these are the telltale signs of poor quality research that deliver no actual benefit to patients, and that is why patients will not stand for it.
There has also been change in the patient community in the last few years that ultimately mean this kind of thing is not going to be allowed to continue without challenge as it largely was before. Patients are not going to accept it and will increase their efforts as much as is needed to bring a stop to it. Patients know their only chance of getting better is through genuine high quality biological research and in combination with that doing away with the kind of nonsense that holds it back.
Patients have also abandoned their fear of being smeared, because they realized that we get bad mouthed anyway, and there is no way past the fire but through it. In fact, the more they have to resort to trying to make patient critics look bad the more we know that we are winning by exposing what is really happening; so it actually gives us strength. Outside academics and journalists have got involved and together we are exposing and challenging dodgy research in peer-reviewed journals, in the press and with authorities. Patients are protesting and these movements are growing and becoming more organized. There has been so much spin and propaganda that patients, and patient-organizations have got wise to it, have developed skills at spotting it, and are challenging it.
The easy old ways are gone. The real question now is can researchers who have spent years carrying out poor quality research along the lines of PACE truly adapt to produce worthwhile research that meets the standards that are now expected? I think the answers is likely no, but if that is the case I see their position in the field of ME/CFS becoming more and more difficult every year and it won't be long until the funding dries up entirely for the types of research that have enjoyed many easy decades where it was possible to get away with producing wasteful nonsense. Those days are gone.
I certainly find it thoroughly offensive.
This BPS media blitz is taking up far too much of my time lately, but what the heck I feel like a rant so here goes:
There’s something we can agree on. Shall we start by ending the smearing, labelling and name-calling of those with different views?
Right-ho, I’ll switch of my critical faculties for the cause then.
If by “We” you are referring to yourself and your BPS buddies, thank-you for that admission. If you ever find the time to take your heads from up your arses you may find that the rest of the world has been rather busy lately. Read the IOM Report (rather than Shorter’s summary of it) or accept and invitation to a IiME conference, why don’t you?
So that’s the children, the mothers and the siblings covered. Got a problem with mentioning the fathers?
Yes, you are, please stop it. “some people” is a phrase used by old ladies in the queue at the butchers when talking about the woman behind them, as in “some people are no better than they should be” said just loud enough for the gossiped-about woman to hear, with a knowing glance thrown in for good measure.
“Decry”. Nice word.
That few patients are offered treatment and that there is almost no research on the condition is true. That this is a result of “some people” “decrying” is pure assertion on your part without any evidence, and a viewpoint recently strongly criticised by a FOI tribunal judge.
So why did you engage in a turf batte which ended with one of the few that did (Nigel Speight) being suspended by the GMC?
It’s only one of the biggest reasons for them to miss school according to your telephone survey of their parents. Great diagnostic practices from the epidemiologist of the MEGA trial. Sure I’m united in the push to find blah blah.
Please elaborate on what you know about adult ME. “Different biology” implies that the treatments will also need to be biomedical, although I am of course united in the push to make progress on behavioural treatments for biological illnesses, having turned off my critical faculties so I can’t be accused of not being a team player on this one.
We most certainly do, so kindly step aside so that scientists with expertise in infection, genetics, hormones, metabolism etc can get down to work. What was your skill-set again? Telephone surveys or something.
Sorry to interrupt again, but what is it with the use of the royal “we” throughout this article? Can you please say “they” when referring to the scientists engaged in biological research?
I look forward to your public take-down of Mr Shorter then.
We’ve got sleep hygiene covered thanks, doesn’t take a million pound study, it’s pacing 101. We know. It can be put on a web-page. In fact someone has, years ago, without charging a million quid for it:
http://www.cfidsselfhelp.org/library/solutions-sleep
Thanks anyway. We'll call you. Seriously.
Sorry, was that a rhetorical question? Perhaps people who have spent the last 3 decades suffering from the illness might have a view? Oh go on then, you tell us, what do we need?
Got something to sell have you?
I’m not even going to comment on that. Except to say that some countries are no better than they should be.
Oh right, you have got something to sell. Sorry, I was being sarcastic earlier. Shouldn’t this article be in the advertising section?
They’re desperate, that’s for sure.
“some people” again. Who exactly? Sufferers who clearly don’t want to get better? And who is "us"?
Does that include those of us who suffer from CFS? Are you implying that “some people” suffering from CFS are outside the group “those of us who want to help people with CFS”? How does that work exactly? And since when is expressing reasonable concerns and frustration that they are never addressed the same as "fighting"?
I thought the whole point of FITNET was to divert much-needed ME research funding into your pocket while the illness continues to be ignored. Have I misunderstood something? Must be a communication breakdown somewhere.
By the way, are you the same lady who conducted the SMILE trial into Parker the Circle-Drawer's Lightning Process? Instead of spending a huge sum of money which Bristol University has refused to disclose, you could have just read a 12-page thread about it on PR, which has been there since 2010:
http://forums.phoenixrising.me/inde...-the-lightning-process.3720/page-9#post-83848
From which I quote:
Is circle-drawing a behavioural or biomedical therapy? That was a rhetorical question, it's actually miraculous, and has been around since the 1st century, but study it anyway just to cover all the bases, why don't you:
http://www.jewishencyclopedia.com/articles/11711-onias-honi-ha-me-aggel
Etc ...
I know it is a full on rant ... but it really is a very good and rather well reasoned rant
Thank you Tired Sam for that fantastic post, I didn't think I would smile today until I read this.
taniaaust1
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lol that shows how much they really want to "unite". Yes its all just propaganda.
taniaaust1
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If this wasnt just propaganda, they'd be acting on those things they said eg if they truely believe ME/CFS is different to fatigue (chronic fatigue), why on earth arent they only recruiting those who have post exertional fatigue in their studies rather then recruiting people who have just fatigue and just one symptom.
The part about ME/CFS in children and adults being different, is just to justify the research they want to do on kids seeing the PACE trial failed. This whole thing is just propaganda and about trying to make themselves look better to the ME/CFS community and to others. Her trial wont go ahead if the ME/CFS community refuses to enrol in it.
This is put out to try to fool people into thinking that they actually are okay but these ones are anything but that. The heat has been turned onto them and they do not like it, they need to make themselves appear reasonable.
Till crawley and buddies stop using "subjective" results instead of objective ones and till they stop recruiting people with just chronic fatigue into their studies rather then just focusing on ones with just post exertional fatigue who do have actual ME/CFS, we really cant believe these ones intend to do good.
Their true colours show though their actual actions they can fool some with words eg those who are newer to ME/CFS who havent had the experience of what goes on with all this.
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