Radio on ME/CFS Sat 5th Nov 9-10amGMT

Esther12

Esther12

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[18.22 PH] And you’re satisfied the trial was properly constructed and fair and valid ?
[18.24 EC] Absolutely, it was a GREAT, great trial. I mean, you know, it’s very difficult to do trials in this condition, but they did as good as anybody could have done.
[18.28 EC] Now, the reanalysis was based on recovery, and the reanalysis just looked at recovery. Now, in my research, what I found (and I don’t think this will be any surprise to anybody with this condition), is that how you define recovery, depends on who you are. So every child that we asked, on how to define recovery, comes up with a different definition. What the reanalysis did is, first of all they did a reanalysis of recovery based on what the authors originally said they were gunna do, and that reanalysis done by the authors is entirely consistent with their original results.
[18:58 EC] Then the people that did the reanalysis did it again, using a different definition of recovery, that was much much harder to reach – and the trial just wasn’t big enough to show a difference, and they didn’t show a difference. Now, you know, [19.11] you can pick and choose how you redefine recovery, and that’s all very important research, but the message from the PACE Trial is not contested; the message is, if you want to get better, you’re much more likely to get better if you get specialist treatment.
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Wow! If that's accurate, she is an utterly contemptible quack. Even worse than I'd thought before. What a vile misrepresentation of reality.

edit: I just checked the audio and the above is accurate.
 
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Esther12

Esther12

Senior Member
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13,774
[25.54 EC] Oh, people have really made a mistake on this. So, in the FITNET Trial, they were offered FITNIT or usual care for six months, and then if they didn’t make a recovery in the usual care, they were offered FITNET again, and they were then followed up at 2 to 3 years, so of course what happened is that a lot of the children who were in the original control arm, then got FITNET as well, so it’s not surprising that at 2 or 3 years, the results were similar. However, their recovery was still very high, it was still in the same region of about two-thirds.
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What about those who never received FITNET? Didn't they also have the same rate of recovery?

[29.12 EC] Yeah, and that’s why we have lots of Frequently Asked Questions on our website, and as we get questions we post responses. And particularly for example the long term recovery rate, it’s very important for us to go out and say, ‘actually if you go back and read that paper again, a lot of the people with children in the control arm, ended up with FITNET.
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Hmm... that could be interesting.

[27.40 PH] With Skype, what I’m worried about is that if this is very successful, I’m going to be out of a job; I like to think I’m kind and compassionate, I have a 90 minute consultation when I first see
patients and try and make the diagnosis, I do lots of empathy and compassion and understanding, and reinforce that it’s a real illness.
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Bleurgh!

[32.33 EC] Dunno, I think it would be nice if there were a drug therapy for patients with chronic Fatigue Syndrome, but I’d also say to you that most of the parents and most of the children that come to my clinic, don’t want medicine, they’d much rather do other stuff that gets them better, rather than take a tablet. I think in ten year’s time we’ll understand the different types of Chronic Fatigue Syndrome, and hopefully we’ll have better treatment that works in a higher number of patients within each subtype.
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LOL - that sounds like she was spinning too much, and went implausible. So they're really seriously ill... but don't want effective medicine? They'd rather do other stuff?
 
JaimeS

JaimeS

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She's mingling the old-school BPS, new-school BPS (which is a random mish-mash of pacing, CBT and GET, using ideas from each almost interchangeably), and biomedical language in hopes of catching everyone with at least one idea with which they agree.

This creates the illusion of respectability for the entire conversation, but if you examine what's said, a good deal of it directly contradicts itself and gives you the impression that Crawley is confused about what she did, the rationale for why she did it, who has ME, why, and what ME is.
 
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AndyPR

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So she dismisses the biomedical research being done elsewhere, and actually wants it stopped(?), as its not being replicated, wastes money in CBT trials, wants to do an alleged biomedical trial in MEGA that isn't specifically looking to replicate anything and will be studying fatigue, yet claims that the knowledge on subtypes will advance. How's that going to happen then. The woman has no grounding in reality.

She also seems to have no understanding of what a control arm of study is there for, as she seems perfectly happy for everyone to get the same treatment. :bang-head:
 
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worldbackwards

Senior Member
Messages
2,051
JaimeS said:
She's mingling the old-school BPS, new-school BPS (which is a random mish-mash of pacing, CBT and GET, using ideas from each almost interchangeably), and biomedical language in hopes of catching everyone with at least one idea with which they agree.
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It's an approach where she says whatever she has to to retain control of the patients. The idea that patients wouldn't want an immediate cure is risible, it smacks of a desperation to stay in charge of the situation. God forbid anyone should walk away without being told it was all their fault.
 
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Ysabelle-S

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524
She's afraid of the science which is why she wants it to stop. The science will put her out of business. She's all over the place, not making any sense. That's someone seeing their career going down the pan. And that's what will happen sooner or later. Speight will be vindicated. She will not.

She's the medical equivalent of a flat-earther, a climate change denier. Imagine wanting scientific research to stop! That goes against science itself. The current situation benefits people like her. They're not in a hurry to see it end. Meanwhile our lives are ticking away, one year gone after another. And people in our community pass away.

But I think saying that PACE is a great study is only going to encourage more people to expose it. That is going to be a red flag to a few people.

We need to keep supporting the good researchers. We could also do with congressional intervention if that were possible. More biomedical research findings would help there.

This week would probably not have happened if PACE had not been exposed as an utter sham, if the biomedical research wasn't converging, etc, etc. They were always going to fight to hold on to every bit of turf they have. Science will defeat them.
 
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user9876

Senior Member
Messages
4,556
Rose49 said:
I'm so mind boggled by her skillful manipulation. It's so amazing. I wonder if she really believes what she is saying?! If so it's hard to trust a study she is involved in.
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Having encountered her as my child's doctor I think she knows exactly what she is doing in terms of manipulation.

One of the issues is she claims to have made sick children better. Parents and children tell her service that they are following her advice even when they don't as they are concerned about child protection action.
 
2

2kidswithME

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Location
Oxfordshire, England
eafw said:
John Darvall available direct on bbc website ( this is for the prog that was Tue 1st Nov)

http://www.bbc.co.uk/programmes/p04bpgzf

also can catch up on bbc radio app
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Thanks for posting this, I've just listened to the first hour and it sounds like he was to move on to another topic in the second hour so maybe got most of it. Several people phoned in with their stories, several very ill for years, a couple said that using a computer wouldn't have worked for them [for therapy] as they were too ill. A couple put in a plea for biomedical research. He also spoke with dr Phil Hammond, who has a regular Saturday slot, as we know(!). His main point was they work to sort out the sleep issues, which affects hormones, etc. He didn't actually say that people then improve, but it was implied. Also some about baseline followed by regular increases.

What I would like to know is if there is any research supporting this approach? Dr Phil clearly put a lot of stock in this (resolving sleep issues) helping, but is there research comparing to other interventions, or none? Nothing comes to mind.

Recommend listening if you can, the presenter is working hard to understand the condition and clearly has a lot of empathy for those affected. He was aware the pace trial is crumbling, but not that the Dutch trial showed null results on followup. If someone has a contact for him we could point that out to him! Ec probably slid over that small detail in the Saturday interview. If I were dr Phil I'd do a runner and distance myself from her research!
 
Janet Dafoe

Janet Dafoe

Board Member
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user9876 said:
Having encountered her as my child's doctor I think she knows exactly what she is doing in terms of manipulation.

One of the issues is she claims to have made sick children better. Parents and children tell her service that they are following her advice even when they don't as they are concerned about child protection action.
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I feel like we are back in the Middle Ages. Never ceases to boggle the mind. So awful.
 
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AndyPR

Senior Member
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Guiding the lifeboats to safer waters.
Rose49 said:
I feel like we are back in the Middle Ages. Never ceases to boggle the mind. So awful.
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Sadly, this is the state of ME treatment in this country. Research by the establishment is in the same state, it's only charities such as Invest in ME who are doing biomedical research. My expectation is that once valid treatments are confirmed, I will have to go abroad to receive those treatments rather than wait for the NHS to see the light.
 
Jenny TipsforME

Jenny TipsforME

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Bristol
JaimeS said:
new-school BPS (which is a random mish-mash of pacing, CBT and GET, using ideas from each almost interchangeably
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It feels like we could do with establishing clearer boundaries and agreed definitions around what we mean by these terms. At what point does pacing become graded exercise for example? I'd say both can involve increasing activity but in pacing increase follows general health improvement, in GET it expects to cause the improvement and is likely to a schedule.

We can then call researchers to account when they describe a pacing strategy, but call it CBT, and make us look like the nasty party for disagreeing

2kidswithME said:
He was aware the pace trial is crumbling, but not that the Dutch trial showed null results on followup. If someone has a contact for him we could point that out to him
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Ah the clip I added on this thread includes me letting him know about this. He rushed me a bit at the end to go into the news was just before 11am (1hr49 into the programme).
 
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