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Investigating using FITNET to treat paediatric CFS/ME in UK (FITNET-NHS)
- Thread starter Dolphin
- Start date
Comet
I'm Not Imaginary
- Messages
- 694
There is enough evidence for Esther Crawley and her bunch to know what ME is at this point. For her to continue in this vein is unethical and, imo, immoral and inhumane.
Do people in the UK lose their licenses for potentially harming patients? Why is she allowed to continue?
Do people in the UK lose their licenses for potentially harming patients? Why is she allowed to continue?
halcyon
Senior Member
- Messages
- 2,482
Maybe because she's not even recruiting ME patients, just kids with chronic fatigue. Unless I missed it, it doesn't even say what inclusion criteria they intend to use.
Vasha
Senior Member
- Messages
- 119
The utter lack of objective outcome measures (with the possible exception of school attendance--but at what cost to the child?) certainly sticks out.
Further, the treatment groups are not even arguably equivalent in the way you would want them to be in order to impose some basic controls.
The CBT/FITNET arm involves weekly contact with a therapist and completing 21 homework modules. The protocol does not say what kind of contact.
The Adaptive Pacing (edit: Activity Management--I can't keep up with the different terms) arm involves three Skype calls with some instructions and otherwise the family is left to its own devices. With the potential for a maximum (so it could be fewer?) of three calls with the family's physician.
These are very different! The therapist contact could even be in-person contact.
At a minimum, the arms should have equivalent:
-contact (to account for any benefit (or artefact) that comes from the contact)
-exercises/homework
-work with the family physician
And they will be changing the protocol: "We will interview children, their parents and clinicians and use the results to make changes to the trial."
I see no meaningful way to compare these arms.
There is no indication of how long the trial itself will be.
The design is almost bizarrely poor. I am honestly puzzled as to why someone would use such weak methods.
A million pounds!!!
Vasha
Kati
Patient in training
- Messages
- 5,497
The timing of this is very interesting as Dr Speight is forbidden to see patients with ME (and his specialty is pediatrics) and forbidden to attend or speak in conferences about ME.
Who will speak for those children?
Seemingly this team received ethics approval to proceed.
Cheshire
Senior Member
- Messages
- 1,129
How do the CMRC, that keep repeating "ME is an organic disease", "we do biomedical research", justify that one of their prominent member use such lousy criteria that don't mean anything? There's a point when difficult compromise becomes impossible. For me, the breaking point has been reached when she published her "epidemiologic" study, whose methodology seems to come from some kind of "scientific study for the dumb". Her work is so bad, I really don't understand.
Even from a psychiatric point of view, this has no meaning. I've never seen criteria so vague in the DSM, fatigue, 3 months.
And the CBT they use is a caricature of psychotherapy. Chalder theory is simplistic yet, but transferred to a computer program, with rare interactions with real therapist?
This study is nothing but a spit in the face of patients.
Edit: grammar question: is "the CMRC" singular or plural? I've heard several times "the police are", in French, it's singular, "la police est", so a bit confusing for me...
Even from a psychiatric point of view, this has no meaning. I've never seen criteria so vague in the DSM, fatigue, 3 months.
And the CBT they use is a caricature of psychotherapy. Chalder theory is simplistic yet, but transferred to a computer program, with rare interactions with real therapist?
This study is nothing but a spit in the face of patients.
Edit: grammar question: is "the CMRC" singular or plural? I've heard several times "the police are", in French, it's singular, "la police est", so a bit confusing for me...
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worldbackwards
Senior Member
- Messages
- 2,051
I think it can be either, as you could be referring to the body itself or the group of people who make it up. Although it probably isn't a good idea to expect the English to know how to speak our own language.
A.B.
Senior Member
- Messages
- 3,780
But then how are they going to conflate a placebo effect with a treatment effect?
It doesn't look like finding out the truth is the goal here.
At risk of appearing pedantic I assume this question seeks an answer. According to Fowler's Modern English Usage a noun of multitude may stand either for a single entity or for the individuals who compose it, and such nouns are treated as singular or plural at discretion-"and sometimes, naturally, without discretion".
"In general it may be said that though there are always a better and a worse in the matter, there are seldom a right and a wrong."
worldbackwards
Senior Member
- Messages
- 2,051
Isn't the term FITNET a touch ironic, given that the one thing that demonstrably doesn't improve with CBT is fitness?
Don't forget these two mentioned in passing:
Surely this couldn't possibly lead to a conclusion that some unemployed are hiding behind (or even encouraging) their childrens' false illness beliefs and wasting public money in order to avoid having to go and do a day's work? I mean, Esther wouldn't stoop so low would she? Would she?
Oh good, glad that's sorted.
Wow
"the charities" she's talking about are not charities either, they are a front for psychobabblers to continue their continued campaign of misinformation and to facilitate access to vulnerable subjects for abusive experiments.
Snowdrop
Rebel without a biscuit
- Messages
- 2,933
I wonder if there is any possibility that University of Bristol could be investigated for fraudulent use of funds.
There is no legitimate way to conflate simple fatigue with ME. As has been already said they aren't studying anything---and for a whole lot of money.
There is no legitimate way to conflate simple fatigue with ME. As has been already said they aren't studying anything---and for a whole lot of money.
Cheshire
Senior Member
- Messages
- 1,129
Yes, their "criteria" do not even fit the NICE guidelines:
http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/Diagnosis.aspx
Vasha
Senior Member
- Messages
- 119
I think it can be either, as you could be referring to the body itself or the group of people who make it up. Although it probably isn't a good idea to expect the English to know how to speak our own language.
Brief further grammar-nerd aside for @Cheshire:
@Chrisb gave the rule. As a matter of usage:
In British English, the collective entity is plural: "Chelsea are winning the match."
In American English, the collective entity is singular: "Tampa is winning the baseball game."
Or "the NYPD is" in American but "the Met are" in British (I probably got the collective term wrong).
But it is still "the police are" or "the players are" on both sides of the Pond, I suppose because the implication of that construction is of individuals in a group.
(Also, I've recently seen the collective entity plural in the New Yorker, so Americans may be going the other way someday....)
Pedantic enough?
Vasha
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Vasha
Senior Member
- Messages
- 119
I so prefer to believe that--even if misguided--intentions are to help. But even if the blinders of true belief were on everyone who developed it, it's really hard to explain this study design.
Sigh.
Vasha