Discussion in 'General ME/CFS News' started by Daisymay, Jan 26, 2013.
Oops!! Wrong link.
I believe that there is an element of revenge that some patients want. Maybe somewhere between revenge and retribution? Retribution is different than accountability. IMHO
Respectfully, in my opinion it is more likely that you are mistaking frustration, anger and a strong need for understanding as a desire for revenge. This unwillingness to listen to patients and the pushing of CBT as a cure is doing massive harm. It turns people off cognitive therapies that are incredibly useful in coping with a chronic illness.
Lots of people are angry, I understand that. Some are extremely angry. Yet if they were offered a solution instead of revenge, how many would refuse it? Not many, maybe none.
Accountability is critical, and transparency is necessary for accountability. If we become afraid of either accountability or transparency due to emotional factors, then we may be forced to accept secrecy and the status quo.
I suspect very few of us, if any, are happy with the status quo.
Actually this is not a change of position. White has still said the illness "develops in the first place" because of "certain infections". This isn't why people continue to be ill, in his and his friends' estimation. That is related to "beliefs about an illness determine the ways people cope with it". And recover or not. According to much of their published research, according to their "pragmatic rehabilitation", according to claims made in PACE manuals, and according to claims of 'return to normal' and even 'recovery' in the literature (no 'recovery' there) and to the media.
SW has been forced, by this recent correspondence with Lady Mar, to state that those who continue to be ill because of maladaptive behavior is a minority group. This is a good concession. And as far as I know, quite a new position.
As WillowJ wrote, none of this is a repudiation of their position that CFS is due to dysfunctional beliefs. Its more language with multiple interpretations. Since some interpret this one way, and some another, and the authors can pick and choose interpretations later (using the same text) this is potentially spin.
Full of admiration for the Countess of Mar - thanks for keeping us in touch dasiymay.
Told you I was going nuts. Thanks Alex. So next week then possibly although there was no date on this letter so who knows?
1. Sir Simon and White did not write anything together that appeared in the Independent on Sunday, and certainly not as per the link. The letter published by all those in support of Wessely's prize did not include Wessely himself. So I remain bemused by this reference and the link to a letter that has no bearing on the subsequent content of the reply.
2. Which papers and where are the links? Why isn't the full reply posted here along with a date? Instead we seem to have 'extracts'? Seems very 'odd' to me when in the past this source has published everything in full. So perhaps White's letter would be explained were the full letter to be published along with the correct links?
I can't be arsed to go through all the reply. I am sorry about that. Too much crap to deal with personally at the moment.
Look forward to reading all the analysis though. Can't imagine what White will make of the reply. In all fairness I am not swayed by the style or content - rather rambling is it not?
Would someone mind providing a link to the source of White's quotes for me? I'd be obliged. A quick google search didn't reveal it. I presume it relates to one of the published letters or maybe an article from somewhere but there have been so many that I can't recall it exactly. Thanks.
The letter had a date on another site, I think Jan 13?
I think White and friends posted the cited text as a comment on the IoS website under the moniker CFS123. If you click here and search for "CFS123" that should take you to it.
Yeah I now dude but that was Lady Mar's, Prof. Hooper's and Weirs, letter. It wasn't White and Wessely's letter. I don't understand what they are talking about. Might be me but the quotes from White are not germane to that letter. It makes no sense
Ok. Thanks Sam. Jeepers. They don't half make it difficult for this mere mortal to follow
Will have to read it all another day. But cheers for posting the link.
The reply was 25 Jan. That puts the White reply between the 13th and the 25th.
Part of accountability is ensuring punishment. Transparancy ensures that wrong doing will be detected and more importantly it ensures that people behave correctly.
It seems clear to me that White believes that he should be above judgement from the great unwashed masses, thats the impression I get from reading their responses to FoI requests.
This letter is typical in the way they try to twist words. They talk about a viral trigger but that was never the point being raised. If they acted as proper scientists and defined their terms and models clearly and formally they wouldn't be able to get away with this. They are either very wooly thinkers or are deliberately trying to deceive.
Personally I think the PACE trial statistision and Peter White should lose their jobs for the way the trials measurement system was so poorly constructed that it provides no useful information (hence wasting 5m pounds). And my opinions are not due to what they are saying but the poor quality of their work.
I think the semantics of what is said by somebody like White isn't always as interesting as what isn't said. The liberties taken with inferences in many psych papers along with the abhorrent lack of any sincere attack on the hypothesis they make are more startling than anything that is claimed in my opinion. The deux ex machina (god in the machine - an old stage prop, often a cheap way of resolving a plot with some divine intervention) arguments of de-conditioning or patient co-operation are well worn.
If indeed White seriously wants to suggest that ME/CFS is being treated as though it were any illness and the illness state is 'perpetuated' by beliefs about it, someone might want to ask, why spend the scant money available for ME/CFS research on the most funded UK study in history on a question that could be asked about, dozens, hundreds or maybe thousands of other conditions. The ethics behind such a procurement are fairly shocking I think.
I wrote a blog post about White's upcoming GETSET trial last year:- http://forums.phoenixrising.me/index.php?entries/on-the-latest-get-trial.1316/ , highlighting the ethical concerns with the work. Doing any sort of GET trial at this point without using extensive objective measures (and moreover, diligently attacking the hypothesis) is both an insult and a reckless endangerment of patients:
I'm sure there's plenty in this letter that can be picked apart, but I wouldn't mind challenging a few folk, to spend some time pointing out what is right with it. Those who work in politics will often ask strong questions, much in the same way a solicitor or barrister might do in court, as much designed to elicit a response as they are to get an actual answer to a question. By that token it is very much a politician's letter.
I guess that everyone can use language differently, so I'm not really sure if we disagree about anything. Personally, I tend to just argue for what I think is right, and don't worry too much about political realities.
Just to clear up, I only did a very quick check of some of the quotes there. I didn't read the full papers they were taken from, or read Mar's letter closely enough to get an understanding of her arguments. I did a quick check for the accuracy of some things to see if it was worth going back to later (ellipses make me suspicious), and I didn't find any real problems. I could well have missed things, or not understood what was being said well enough to pick up minor problems. (Sorry.... I can't save you that time!)
I really don't know much about Mar's advocacy, and haven't even been following this correspondence closely. I think that this letter does raise some worthwhile points that have been ignored as inconvenient by many CFS researchers, and it's good that Mar has taken the time to do so.
Hi; I think we are seeing a rather confused retreat being repackaged as a clarification and strategic repositioning, with a good deal of muddle appearing in the process. The responses that Lady Mar has evoked (provoked) together with White’s recent short paper in which he claims that they "have come far from the old days of mind/ body split" (not exact quotation) suggest that they are smart enough to see which way the wind is blowing, and are trying to keep in the game while doing a shuffle to change position.
I would suspect that the large recent grant from the MRC to Julia Newton’s group in Newcastle gave them a real push–they are being outflanked. In the process, an interesting geographical split is emerging–the staid, "old boy" south centred on London, vs. the go-ahead, smart north–Lady Mar, Professor Hooper and Margaret Williams in Sunderland, and the Julia Newton group in Newcastle. I would love to hear a live audio confrontation between these groups!
Lady Mar’s strategic choice of an "open" correspondence is proving an absolute winner–drawing the conflicted positionings of the W and W gang out into the open where they can be exposed and attacked in a very satisfying way. It is wonderful to watch unfold! Wessely must be kicking himself for having accepted the challenge.
Particularly in view of recent comments from W and W on GWS, and that outrageous little piece on MCS and ES as modern versions of medieval hermits, I think those groups should focus their energies on opening up more fronts–the GWS people could find some way to work on the military connections of Wessely, and maybe the MCS and ES groups could find a way to open up a third front–I guess it really helps to have a brave, intelligent, and confident spokesperson quite prepared for some limelight and publicity.
Can’t wait for the next installment! It reminds me of watching the post-Normandy progress of WW11 on a large map in the living room, while we followed the news on the radio.
Right. Let's try and get this straight. White hasn't written an actual letter or email to Mar that Mar (and others) have responded to. This response was prompted by comments made by White and Wessely on that Independent on Sunday, comments section. Crystal clear as mud.
Well that clears that up for me I guess. Might actually try and process the reply now... Danke.
Lady Marr's reply was excellent. She carefully deconstructed and dissected white's and wessely's assertions and allegations. For those of us who took the time and effort to read it, it was well worth the read. The scientific journals and magazines should be briefed about these errors in scientific research by wessely, white, sharpe, etc., so that this type of research is subject to more scrutiny and rejections in future, in the interests of serving science.
Hopefully this public and Internet debate between the Countess and wessely will provide a stimulus for biological and biomedical scientific research into ME/CFS and proper government funding in future. Which in time will lead to more accurate diagnosis and treatments for us all.
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