Discussion in 'General ME/CFS News' started by Kalliope, Aug 23, 2018.
That occurred to me but I didn't want to speculate. The recruitment phase on the website still has a long way to go, so it might just be in the normal course of things.
recruiting until 2020.........seems rather a long time.
When is she expecting to publish results?............I hope they (NICE) don't do like the last time (with PACE) and postpone making a decision on the guidelines until her trial has ended.
It seems Red Whale are already marketing training for Medically Unexplained Symptoms to GPs and primary health care professionals, which includes a handbook that seems by inference, if it is also the online handbook alluded to in their CFS/ME Update, to contain information on CFS/ME ("There is also a more comprehensive article on CFS/ME including the 2007 NICE Guideline in the online handbook.").
It seems likely that Red Whale, whether by conscious decision or indirectly by accident of their course choices, have already committed to a psychosocial model of ME and are invested in the MUS bandwagon. Presumably some familiar names are likely to be involved in drawing up these resources for them, so it may be that this promotion of FITNET-NHS was not specifically commissioned by the University of Bristol, but was initiated by Red Whale themselves growing out of their ongoing involvement in promoting MUS. Indeed the chatty anecdote in their 'update' implies this: "At the beginning of November 2016, I woke up to a Radio 4 report of a trial that could successfully treat two-thirds of CFS/ME in adolescents without the use of drugs. Of course, I sat up and listened... Most of us will immediately have a patient or two that will spring to mind who might benefit. ... .... ... – so what is the news behind the headline?", though we are not told the identity of this narrator.
We do not yet know if the University of Bristol are aware of the format of this promotion of their research and if they understand or not that it's wording undermines the reliability of any subjective outcomes in their study even before any subjects are seen. Obviously we can not rule out that they are repeated the same mistake made by PACE in their newsletters as they look to be repeating many other of the PACE flaws, but it may be they knew nothing about this specific wording.
This is true, but it's more or less the same message with which the trial was introduced to the public. And the FITNET-NHS site on the Bristol page isn't much better. So the ad very much resembles the Bristol approach to recruitment, although maybe it's a little blunter. In any event, the local research ethics committee, which falls under the purview of the Health Research Authority, is supposed to review materials related to a clinical trial, and that includes recruitment materials, as I understand it.
You are correct, though we do not yet know if this was a formal commission by the University of Bristol FITNET team, reinforcing their complete inability to conduct scientifically reliable research, or a result of an overlap of personnel or theoretical approach between the Bristol/Bath team and Red Whale that could turn out to be an even bigger embarrassment for Bristol University.
Either way it is young people with ME/CFS that suffer.
But, GP UPdate/Red Whale (or is it "Red Herring")?
GP UPdate/Red Whale is a private Company, the "public face" of our privatised health system -(another CIC- Community Interest Company under the auspices of the Department of Communities and Local Government)- answerable only to Companies House.
I am unsure who oversees GP and other Education offered by the market place and private companies? Can someone enlighten me?
Does the GMC do validation?
Yes, I agree with this. That's why I asked the questions about sponsorship and arrangements. I got a pro forma response from an administrative person with a promise that I would get a substantive response from the appropriate person or people.
Maybe hoping we'll all have died by then.
Can you or anyone remember any details about this study? Could be useful to cite but I don’t recall it.
Link to the thread about a recent study that reviewed all pre-2016 papers on school functioning (mainly school attendance) in young people with CFS. The authors cited a reference about the inaccuracy of self-reported school attendance more broadly.
Well now AYME has been absorbed into AfME I imagine her ready supply of victims, sorry, patients, has been considerably reduced.
AfME did post on their website about it and link to the trial.
(it does point out some flaws with the Dutch studies, but quite far down the article).
Still playing both sides...
By the way, referring to my Red Wale/Red Herring comment.....
A red herring is something that misleads or distracts from a relevant or important issue. It may be either a logical fallacy or a literary device that leads readers or audiences towards a false conclusion.
Is red herring an expression only used in England or is it used in other English speaking countries as well?
Anyway, you made me laugh out loud. Thanks!
certainly used in US.
We all need an injection of humor now and again!.... I wonder what made them choose Red Whale!!?? sure it should be Red Wail........?
Separate names with a comma.