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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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
Barb
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
Barb
What more could we ask for? White actually said what many have wanted to hear.We would like to correct several errors of fact in the letter published on this website by the Countess of Mar and others. These authors state that we "..have promoted an hypothesis that ME/CFS is due to an abnormal illness beliefs,.. " We have not; beliefs about an illness determine the ways people cope with it, but this has little to do with how the illness develops in the first place (its immediate cause), which our own research has shown can follow certain infections
Yes, we need to be somewhat skeptical about what a person says and sometimes actions speak louder than words but where do we draw the line for reasonable expectations of a person's behavior?
As a wise poster wrote, what do we want revenge or to move forward? That speaks volumes.
Barb
Not three months, three weeks, from two weeks ago.
1. As a matter of courtesy and for your information, I attach the link to an IoS wesbite posting from Sir Simon and myself, which was uploaded on Saturday.
2. Also for your information, I attach two of my most relevant papers that speak to the important role of infection as an immediate cause of CFS.
Yours sincerely,
Professor White
http://www.independent.co.uk/voices...-online-postings-13-january-2013-8449260.html
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?
http://www.meactionuk.org.uk/Reply-to-PDW-and-Sir-Simon.htm
Hi Fire,
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
Part of accountability is ensuring punishment. Transparancy ensures that wrong doing will be detected and more importantly it ensures that people behave correctly.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
Barb
Perhaps the most haunting thing of all is the ostensible lack of objective efficacy measurements, once again plaguing a Graded Exercise Therapy trial. If the agnostic assumes that the patient could be unreliable as a participant in GET, and that this is a possible explanation for the reported failures of this treatment, it surely holds that this fallibility also applies to positive results and that human vanity or the desire to get better at all costs makes the patient a source of bias. Again I must ask, is it ethical to put patients through such a trial without quality objective measurements? Not only because harm itself can escape the perception of the patient, but because a lack of quality data could be seen by many as a lack of respect for the brave and pioneering patients who subject themselves to potentially harmful trials.
I didn't have time to check the quotes and I did assume they were still taken out of context. I will take your word about them. Saves me some time.
...
We will have to agree to disagree about Mar's advocacy.
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.
CFS123 8 days ago [I presume this would give a date of 19 January 2013]
John Maddox Prize:
We would like to correct several errors of fact in the letter published on this website by the Countess of Mar and others. These authors state that we "..have promoted an hypothesis that ME/CFS is due to an abnormal illness beliefs,.. "
We have not; beliefs about an illness determine the ways people cope with it, but this has little to do with how the illness develops in the first place (its immediate cause), which our own research has shown can follow certain infections.
The correspondents also mention the PACE trial and state that "No data on recovery rates and positive outcomes have been released.."
The results of positive (and negative) outcomes were published in the Lancet medical journal early in 2011. The results of recovery rates are due to be published in the medical journal Psychological Medicine within the next three weeks.
The authors state that "There has been no attempt by Professor White to correct the misapprehension in respected journals as well as the popular press that the PACE trial demonstrated recovery rates of between 30% and 40%."
Again this is not the case; Prof White and colleagues published the following in the Lancet in May 2011: "It is important to clarify that our paper did not report on recovery; we will address this in a future publication."
The PACE trial has added to the now overwhelming scientific literature showing that two rehabilitative approaches of cognitive behaviour therapy and graded exercise therapy are moderately effective treatments of what is otherwise a chronic, debilitating and untreatable illness that blights patient's lives.
This is good news that needs sharing.
[With much love and kisses, from]
Professor Peter White Professor Sir Simon Wessely Queen Mary University London and King's College London