Binkie4
Senior Member
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Journalist getting quite a hard time in the comments section. Doubt she'll use " yuppie flu" again.
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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Journalist getting quite a hard time in the comments section. Doubt she'll use " yuppie flu" again.
You may be interested to know.....
Jane Ogden is speaking at a British Psychological Society meeting in November, on Critical Thinking, as described below:
Lecturers are forever telling their students to be more critical but students rarely understand what this means.
This is the strawman that we never adequately knock down. This myth dictates the narrative in public opinion.Patients were offended by the finding as they feared it showed a psychological cause of their symptoms.
To win the war we need to call out the strawman myth of patients not accepting their ME as psychological first. We need to say something like 'this is a strawman, not what patients believe.
Journalist getting quite a hard time in the comments section. Doubt she'll use " yuppie flu" again.
nice to see the link to Julie Rehmeyers article at the bottom of the Daily Mail pieceNow picked up by the Daily Mail - who are concentrating on academics throwing mud at each other over the PACE trial >>
http://www.dailymail.co.uk/health/a...lts-regarding-flawed-study.html#ixzz4oVLZUwAX
I suspect that the great British public will conclude that threre must something 'dodgy' going on here....
C
This is the strawman that we never adequately knock down. This myth dictates the narrative in public opinion.
Every time we get drawn into debate on the scientific points we win the battle but lose the war.
To win the war we need to call out the strawman myth of patients not accepting their ME as psychological first. We need to say something like 'this is a strawman, not what patients believe. Patients are angry that they are only getting psychological treatments for their neurological disorder'. Once we dispel the myth the BPSers have nothing to hide behind.
One thing that pisses me off about this media coverage is the story that:
Is it really so hard to believe that patients had done a better job of assessing the science, and identifying methodological and statistical problemsm, than the UK science community?
- Patients were offended by the finding as they feared it showed a psychological cause of their symptoms.
- Researchers and academics have now raised concerns about the methods and statistics used in the trial.
It is clear that Science Media Centre has spun the main crux of the story about a medical, scientific and financial fraud & scandal into a spat one about emails, resignations and insults.
It appears the SMC press release and behind the scenes briefings have crowded out our story.
It is public relations damage limitation what that they have done.
That they tried to block the JHP publishing and the damage caused to millions of patients doesn't appear in the story
I am not too happy about this. I don't think we should be too happy about this.
I think we need to get more journalists to look into the REAL story and not get sidetracked by SMC distraction narrative. Perhaps leave that as a comment.
Any more stories?
I have found this a bit tricky to navigate because I feel it is right to point out that it was the patients who got things moving and did the analysis. I have tended to say patients objected first and now it is academics (without any suggestions about the motivation though). Maybe from now on I should drop the nicety. After all the patients have admirably demonstrated academic credentials.
Unfortunately I think some of my professional colleagues supporting the PACE critique have muddled it up with the physical/psychological distinction - particularly in the early days. I see the evidence for biological changes and the Norwegian studies as completely separate issues. This is about bad science that is potentially harmful and certainly getting in the way of good management.
This is the strawman that we never adequately knock down. This myth dictates the narrative in public opinion.
Every time we get drawn into debate on the scientific points we win the battle but lose the war.
To win the war we need to call out the strawman myth of patients not accepting their ME as psychological first. We need to say something like 'this is a strawman, not what patients believe. Patients are angry that they are only getting psychological treatments for their neurological disorder'. Once we dispel the myth the BPSers have nothing to hide behind.
As well as pointing out the flaws in PACE, we may need hard campaigning to expose the SMC for what it is.
The anti-psychiatry narrative can be traced back to the psychosocial proponents themselves. They needed an explanation for patients having physical symptoms resulting from their presumed "depression" or other mood problems, and for patients vociferously complaining that CBT and GET don't work. So they started saying that ME patients inappropriately insist on biological research and treatment only because ME patients are a bunch of anti-psychiatry bigots:Unfortunately I think some of my professional colleagues supporting the PACE critique have muddled it up with the physical/psychological distinction - particularly in the early days.
The main difference between CFS and the major psychiatric disorders is neither aetiological, nor symptomatic, but the existence of a powerful lobby group that dislikes any association with psychiatry.
The National Archives of the UK: Public Record Office (PRO) BN 141/1, 1 October 1993 Wessely to Aylward, pp 17-18.
The stereotype of CFS sufferers as perfectionists with negative attitudes toward psychiatry was not supported.
Wood B, Wessely S. Personality and social attitudes in chronic fatigue syndrome J Psychosom Med 1999:47:385-397
One thing that pisses me off about this media coverage is the story that:
Is it really so hard to believe that patients had done a better job of assessing the science, and identifying methodological and statistical problemsm, than the UK science community? Why do they still seem to portray patients' concerns as emotionaly driven and stupid?
- Patients were offended by the finding as they feared it showed a psychological cause of their symptoms.
- Researchers and academics have now raised concerns about the methods and statistics used in the trial.
I imagine the first of the two items above is a result of lobbying that has taken place over many years. The root of that message has not come from patients obviously, its one that's been presented to journalists by those who want to discredit criticism of the BPS model by making patients out to be mental health bigots. Hopefully when pointed out to journalists they will see it for what it is.
I am sure the message has not come from patients but my worry is that many of the critics of PACE have over the years encouraged journalists to think that the physical/psychological issue IS uppermost in their minds. One often hears of 'despite all the evidence of it being a physical disease' coming up in discussions of PACE. In fact there is pretty little evidence that helps one way or another and it is irrelevant to the quality of the trial. In recent discussions with the BBC I was asked it I agree ME was autoimmune or due to a virus, as if this was relevant to the validity of PACE - presumably because somebody else had primed the journalists to think it was relevant.
Journalist getting quite a hard time in the comments section. Doubt she'll use " yuppie flu" again.
I am sure the message has not come from patients but my worry is that many of the critics of PACE have over the years encouraged journalists to think that the physical/psychological issue IS uppermost in their minds.
Exactly this. For how long have we been trying to sensibly and reasonably point out all the flaws with PACE and the rest of the BPS religion? They won't get into a logical and reasoned argument about the science involved because they know they would lose, so we need someone to engage them in a different way, and that someone seems to be Coyne, and Marks to a lesser extent. And to labour the point that I made earlier, when it is done by a non-patient scientist then all the better.