Kati
Patient in training
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Another comment worthy of mention, from professor Carolyn Wilshire:
James Coyne: Should authors declare a conflict of interest...
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BurnA
Senior Member
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Great comment from Carolyn.
The last line resonates with me a lot,
I wonder is there any other medical field where researchers have spent so much time not working on the behalf of patients?
The last line resonates with me a lot,
I wonder is there any other medical field where researchers have spent so much time not working on the behalf of patients?
pattismith
Senior Member
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I suggest that only Koala's scientists get involved in human pathologies research and that only female scientists get involved in prostatic pathologies and baldness research... No conflict of interest this way!
My understanding of the term 'conflict of interest' is that it refers to a situation where an individual stands to gain personally from a situation - usually, but not necessarily, financially - in which the individual is also acting in some other capacity. Dictionaries and wikipedia seem to bear this out:
https://en.wikipedia.org/wiki/Conflict_of_interest
And certainly, a patient may self-evidently stand to gain from publishing worthwhile work in such a situation, and therefore has a personal interest in the matter - this much can be readily accepted - but the question here really is: what, then, is the interest of the other capacity (that of the academic)?
In such a situation, with an academic publishing work about a subject in which they also have a personal stake as a patient, the premise that a conflict of interest may exist in such a situation implies that while they may stand to gain personally, 'as a patient', from their published work 'as an academic', this may detract from or conflict with their interest 'as an academic'.
This begs the question: what is the legitimate interest of 'an academic' in publishing work about an illness? If the interest of a patient is in 'conflict' with the legitimate interest of an academic, just what is the academic's interest in the subject?
If there is a 'conflict' between the interest of the patient, and the interest of an academic, in the study of an illness by which the patient is afflicted, just what does that imply?
One dictionary definition puts it well: "a situation in which the concerns or aims of two different parties are incompatible."
Ergo, if anybody wants to claim that there is a conflict of interest between the interests of a patient and what they consider to be the legitimate interests of an academic, it follows that they consider that the legitimate interests of an academic in studying an illness are not necessarily the same as the legitimate interests of the patients they are studying.
Whilst in the case of those individuals making this particular suggestion, it is almost certainly true that their own interests in conducting the work that they do are in conflict with the interests of the patients they are studying, this does seem a fairly extraordinary thing to admit to.
I rather have the feeling that a shark may have just been jumped...
https://en.wikipedia.org/wiki/Conflict_of_interest
And certainly, a patient may self-evidently stand to gain from publishing worthwhile work in such a situation, and therefore has a personal interest in the matter - this much can be readily accepted - but the question here really is: what, then, is the interest of the other capacity (that of the academic)?
In such a situation, with an academic publishing work about a subject in which they also have a personal stake as a patient, the premise that a conflict of interest may exist in such a situation implies that while they may stand to gain personally, 'as a patient', from their published work 'as an academic', this may detract from or conflict with their interest 'as an academic'.
This begs the question: what is the legitimate interest of 'an academic' in publishing work about an illness? If the interest of a patient is in 'conflict' with the legitimate interest of an academic, just what is the academic's interest in the subject?
If there is a 'conflict' between the interest of the patient, and the interest of an academic, in the study of an illness by which the patient is afflicted, just what does that imply?
One dictionary definition puts it well: "a situation in which the concerns or aims of two different parties are incompatible."
Ergo, if anybody wants to claim that there is a conflict of interest between the interests of a patient and what they consider to be the legitimate interests of an academic, it follows that they consider that the legitimate interests of an academic in studying an illness are not necessarily the same as the legitimate interests of the patients they are studying.
Whilst in the case of those individuals making this particular suggestion, it is almost certainly true that their own interests in conducting the work that they do are in conflict with the interests of the patients they are studying, this does seem a fairly extraordinary thing to admit to.
I rather have the feeling that a shark may have just been jumped...
Snow Leopard
Hibernating
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A "conflict of interest" is not between two parties, it is for the same party, eg a conflict between financial interests and serving patients.
Patients certainly have an "interest", but do not necessarily have a "conflict", unless they have said financial or career interests.
Patients certainly have an "interest", but do not necessarily have a "conflict", unless they have said financial or career interests.
Isn't the conflict between @Keith Geraghty's "skewed perceptions" (it says patients have skewed perceptions in the GET Therapists' Manual, written by Peter White, so he can prove it's true by quoting himself) and his duty to be objective as an author?
@Keith Geraghty is basically wearing two hats, whilst hiding one of them. The conflict is between academic objectivity and delusional borderline sociopathic ME activist patienthood. On these grounds it has long been the case that patients are not to be permitted to speak or be heard, and their views declared invalid before they have even opened their mouths.
This has just about been the position in the UK for the last 30 years. I'm not surprised Peter White is alarmed.
@Keith Geraghty is basically wearing two hats, whilst hiding one of them. The conflict is between academic objectivity and delusional borderline sociopathic ME activist patienthood. On these grounds it has long been the case that patients are not to be permitted to speak or be heard, and their views declared invalid before they have even opened their mouths.
This has just about been the position in the UK for the last 30 years. I'm not surprised Peter White is alarmed.
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One of my posts may have caused an issue. Just to clarify – “skewed perceptions” was my wording, not Prof White’s, and that exact phrase does not appear in the GETSET therapist manual, although in my view is an accurate assessment of what the section on rating of perceived exertion is saying.
Here is the part of my post that is revelant (The initial "They" refers to the authors of the GETSET therapist manual, namely Clark, Tims and White):
[START OF EXCERPT OF MY POST]
They go on to explain to the GES therapists that:
“[rating of perceived exertion] is a concept that is important to the participant in their overall success with GES because it is usual for CFS/ME patients to have higher Rating of Perceived Exertion (RPE) than those who do not have CFS.”
…
They then clarify for the GES therapists that:
“The RPE cannot therefore be used as an objective measure of intensity for this patient group…After an exercise programme, research has shown that the RPE in CFS patients is normalised, and can at that stage usually be reliable as a measure of intensity.”
To be clear, they have stated that a rating of a patient’s perception of how effortful things are relative to other things is an objective measure in some patient groups, but is not objective in CFS, because CFS patients differ from other patient groups in that they have skewed perceptions, perceiving things to be more effortful than they actually are. This skewed perception is fixed, according to the authors, by exercise programmes.
[END OF EXCERPT OF MY POST]
The part in quotation marks is a direct quote from the GETSET therapist manual. The paragraph below the quote, not in quotation marks, starting "To be clear, they have stated…” and including the phrase “skewed perception” is written by me.
My full post is here http://forums.phoenixrising.me/inde...ercise-from-peter-white-and-the-lancet.52541/, #9.
They do use the term "altered perception of effort" on p.7 of the GETSET therapist manual and refer to "changes" in CFS patients' "perception of effort" a couple of times on p.7. The therapist manual is here:
http://www.wolfson.qmul.ac.uk/images/pdfs/getset/GETSET therapists manual with appendices.pdf
or navigate from here if that link doesn't work:
http://www.wolfson.qmul.ac.uk/current-projects/getset-trial#links
Cheshire
Senior Member
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One more appalling behaviour from the PACE team.
These peole have not a single inch of ethics. That they are in charge of patients is beyond me...
And thanks to David Marks for standing up against them.
These peole have not a single inch of ethics. That they are in charge of patients is beyond me...
And thanks to David Marks for standing up against them.
Last edited:
slysaint
Senior Member
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I have still yet to understand what this 'Specialist Medical Care' is, as I for one have had no experience of any.
Thank-you for unskewing.
slysaint
Senior Member
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Came across this letter in the BMJ from 2007 in response to the NICE guidelines and change from ME to CFS.
"
In their editorial of 1st September BMJ 2007; 335:411-412 ”Chronic
fatigue syndrome or myalgic encephalomyelitis NICE guidelines pave the way
forward for patients and doctors", Peter White, Maurice Murphy, Jill Moss,
George Armstrong, and Sir Peter Spencer state that:
"The uncertainty inherent in making a diagnosis of chronic fatigue
syndrome (CFS) is reflected by the variety of names (such as myalgic
encephalomyelitis; ME) it has been given."
"
The authors continue that: "The names reflect the hope that such
labels can impose some certainty where little exists"
"
Giving fair consideration to the beliefs Wessely S, Chalder T, White
PD, Sharpe MC, Prins J, Bleijenberg G and their colleagues hold about
myalgic encephalomyelitis, the authors of the Canadian Guidelines have
remarked that:
"There is much that is objectionable in (their) very value-laden
(second) hypothesis, with its implied primary causal role of cognitive,
behavioral and emotional processes in the genesis of ME/CFS.
This hypothesis is far from being confirmed, either on the basis of
research findings or from its empirical results.
Nevertheless, the assumption of its truth by some has been used to
influence attitudes and decisions within the medical community and the
general cultural and social milieu of ME/CFS.
To ignore the demonstrated biological pathology of this illness, to
disregard the patient's autonomy and experience and tell them to ignore
their symptoms, all too often leads to blaming patients for their illness
and withholding medical support and treatment.
It is unlikely that the CBT and GET studies that were included in the
recent review (Whiting P, Bagnall AM, Sowden AJ, Cornell JE, Mulrow CD,
Pamirez G. JAMA 2001) of treatments dealt with comparable homogeneous
groups since different inclusion and exclusion criteria were used in
selecting the test patients and control groups".
"
The authors of this editorial state:
"We remain unsure of its causes, pathophysiology, or how to classify
it, but there are many other remediable conditions of which this is also
true."
The authors’ claim here is that myalgic encephalomyelitis is curable
(‘remediable’)."
"
The General Medical Council make it clear that:
"You must not make unjustifiable claims about the quality or outcomes of your services in any
information you provide to patients. It must not offer guarantees of
cures, nor exploit patients’ vulnerability or lack of medical knowledge.
You must not put pressure on people to use a service, for example by
arousing ill-founded fears for their future health."
"
With respect to the alleged “management of this disease”, before the
CBT-GET MRC/DWP funded trialists Sharpe M, Wessely S, White PD, Chalder T,
and others began their "collaboration" with the charity Action for M.E.*,
a careful and incisive analysis** of four surveys involving 3074 members
of the public affected by M.E. revealed that the "Least Effective Strategy
was Cognitive Behavioural Therapy and Most Harmful were Graded Exercises"
(D.M Jones MSc. 2001)."
http://www.bmj.com/content/335/7617...onses&panels_ajax_tab_trigger=rapid-responses
Re the GMC statement:
How many times have 'they' (possibly most recently EC) breached this!
And they have to nerve to talk about conflict of interest
"
In their editorial of 1st September BMJ 2007; 335:411-412 ”Chronic
fatigue syndrome or myalgic encephalomyelitis NICE guidelines pave the way
forward for patients and doctors", Peter White, Maurice Murphy, Jill Moss,
George Armstrong, and Sir Peter Spencer state that:
"The uncertainty inherent in making a diagnosis of chronic fatigue
syndrome (CFS) is reflected by the variety of names (such as myalgic
encephalomyelitis; ME) it has been given."
"
The authors continue that: "The names reflect the hope that such
labels can impose some certainty where little exists"
"
Giving fair consideration to the beliefs Wessely S, Chalder T, White
PD, Sharpe MC, Prins J, Bleijenberg G and their colleagues hold about
myalgic encephalomyelitis, the authors of the Canadian Guidelines have
remarked that:
"There is much that is objectionable in (their) very value-laden
(second) hypothesis, with its implied primary causal role of cognitive,
behavioral and emotional processes in the genesis of ME/CFS.
This hypothesis is far from being confirmed, either on the basis of
research findings or from its empirical results.
Nevertheless, the assumption of its truth by some has been used to
influence attitudes and decisions within the medical community and the
general cultural and social milieu of ME/CFS.
To ignore the demonstrated biological pathology of this illness, to
disregard the patient's autonomy and experience and tell them to ignore
their symptoms, all too often leads to blaming patients for their illness
and withholding medical support and treatment.
It is unlikely that the CBT and GET studies that were included in the
recent review (Whiting P, Bagnall AM, Sowden AJ, Cornell JE, Mulrow CD,
Pamirez G. JAMA 2001) of treatments dealt with comparable homogeneous
groups since different inclusion and exclusion criteria were used in
selecting the test patients and control groups".
"
The authors of this editorial state:
"We remain unsure of its causes, pathophysiology, or how to classify
it, but there are many other remediable conditions of which this is also
true."
The authors’ claim here is that myalgic encephalomyelitis is curable
(‘remediable’)."
"
The General Medical Council make it clear that:
"You must not make unjustifiable claims about the quality or outcomes of your services in any
information you provide to patients. It must not offer guarantees of
cures, nor exploit patients’ vulnerability or lack of medical knowledge.
You must not put pressure on people to use a service, for example by
arousing ill-founded fears for their future health."
"
With respect to the alleged “management of this disease”, before the
CBT-GET MRC/DWP funded trialists Sharpe M, Wessely S, White PD, Chalder T,
and others began their "collaboration" with the charity Action for M.E.*,
a careful and incisive analysis** of four surveys involving 3074 members
of the public affected by M.E. revealed that the "Least Effective Strategy
was Cognitive Behavioural Therapy and Most Harmful were Graded Exercises"
(D.M Jones MSc. 2001)."
http://www.bmj.com/content/335/7617...onses&panels_ajax_tab_trigger=rapid-responses
Re the GMC statement:
How many times have 'they' (possibly most recently EC) breached this!
And they have to nerve to talk about conflict of interest
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Using my BPS speak decoder (TM) (c) (All rights reserved)
Specialist Medical Care, means that you have the opportunity to be ignored by a physician with a special interest in something like 'Beer-mats of the World'. See much better than a boring physician!
It doesn't say what they are a specialist in, so they are not making false claims.
In the context of academic research, yes that's the specific meaning of the term, and also in plenty of other contexts. But google it, and the dictionary definition I gave comes up at the top of the page. It gives the example "the conflict of interest between elected officials and corporate lobbyists".
slysaint
Senior Member
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Well, I certainly haven't had much 'Care' medical or otherwise, either.
Cheshire
Senior Member
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Demepivo
Dolores Abernathy
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Is there a thread on James Coyne's new post? (11 July)
https://jcoynester.wordpress.com/20...ript-not-be-peer-reviewed-or-receive-replies/
https://jcoynester.wordpress.com/20...ript-not-be-peer-reviewed-or-receive-replies/
Esther12
Senior Member
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Don't know as I've had a few days being on the internet less, but thes bits of correspondance from the PACE people are pretty interesting.
Cheshire
Senior Member
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Jonathan Edwards
"Gibberish"
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I have only just seen this thread. I think I was away.
A patient writing about a disease has a CONVERGENCE of interest, not a conflict of interest. There is something that used to be called common sense and it can be applied here very simply. Getting the right answer is the interest both for the patient as patient and academic as honest academic.
I am also intrigued that George Davey Smith has put his voice behind the 'anti-science' blather. I never really had an idea whether or not he was sensible or not. Now I know. I no longer feel any doubt that MEGA was a political move by a bunch of people who really do have conflicts of interest. I still wonder why Chris Ponting got involved.
White, Chalder and Sharpe were wingeing about personal attacks. Er... what was that stuff about patients being anti-science and sociopathic and malicious and... The pot never called a kettle blacker.
A patient writing about a disease has a CONVERGENCE of interest, not a conflict of interest. There is something that used to be called common sense and it can be applied here very simply. Getting the right answer is the interest both for the patient as patient and academic as honest academic.
I am also intrigued that George Davey Smith has put his voice behind the 'anti-science' blather. I never really had an idea whether or not he was sensible or not. Now I know. I no longer feel any doubt that MEGA was a political move by a bunch of people who really do have conflicts of interest. I still wonder why Chris Ponting got involved.
White, Chalder and Sharpe were wingeing about personal attacks. Er... what was that stuff about patients being anti-science and sociopathic and malicious and... The pot never called a kettle blacker.