Scientists trade insults over ME (JHP special issue)

[Binkie4]

Journalist getting quite a hard time in the comments section. Doubt she'll use " yuppie flu" again.

 

[JohnCB]

Journalist getting quite a hard time in the comments section. Doubt she'll use " yuppie flu" again.

But if it's a choice between "yuppie flu" and "chronic fatigue" and I think I actually prefer yuppie flu!

 

[Jonathan Edwards]

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.

Should that be: Lecturers are forever telling their students to be more critical but the lecturers rarely understand what this means.

 

[Mrs Sowester]

Patients were offended by the finding as they feared it showed a psychological cause of their symptoms.

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.

 

[A.B.]

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.

Yes. We simply haven't had real public debate on this. We're mostly reacting (angrily) to the CBT/GET propaganda in the media and journals.

The JHP special issue is a big step forward. We need to take the initiative and organize events and articles ourselves where we can make our points clear and explain why CBT/GET is bullshit.

The war will be won by winning many battles. We have started to win battles now.

 

[Stewart]

Journalist getting quite a hard time in the comments section. Doubt she'll use " yuppie flu" again.

To be fair, she probably didn't write the headline - and the sole use of 'yuppie flu' in the article made it clear it was a derogatory name which was used to trivialise the condition. But yeah - she probably won't use it again.

 

[slysaint]

Now 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

nice to see the link to Julie Rehmeyers article at the bottom of the Daily Mail piece
https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

 

[lilpink]

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.

Very YES!

 

[Jonathan Edwards]

One thing that pisses me off about this media coverage is the story that:

• 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.

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?

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.

 

[Deepwater]

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?

As well as pointing out the flaws in PACE, we may need hard campaigning to expose the SMC for what it is.

 

[Esther12]

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.

I think you do a great job of discussing this fairly and accurately. Just a shame that journalists fail to follow your lead! [edit: if anything, you spend too much time praising wise patients!]

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.

From a 'sensationalist' point of view I can see that the biological/mental thing is a fun and simple story for journalists, but it's one that does a great diservice to patients, and plays into a lot of unpleasent prejudices.

Some patients can be loose with their own laguage in a way that makes things worse, and I often see patients say things that could be misinterpreted by those not familiar with evidence in this area. While we could probably all do with being more careful, it is the prejudices that have been quite actively promoted by the PACE defenders that are the real problem. Any slips from patients will now often be filtered through those prejudices. I don't really understand why there isn't more concern about these prejudices from those campaigning mental health professionals who are always going on abut the harm of stigma... unless they're motivated more by self-interest than a real concern for patients.

As well as pointing out the flaws in PACE, we may need hard campaigning to expose the SMC for what it is.

The SMC is such a despicable organisation. If PACE falls, they're exposed by that. Doing more to expose how untrustowrthy they are might help bring down PACE though.

 

[Valentijn]

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 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:

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.

Every time those psychosocial proponents repeat that line, they're falsely maligning the entire ME community. It's especially egregious because at least some of them should know better, based on their own published research:

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

It's unfortunate that the media has uncritically accepted these slurs and frequently repeats them.

 

[Mary]

James Coyne’s profanities certainly caught the news. Is he hurting more than harming because of his language? I guess on the whole more positive than negative; as others have pointed out, he has brought the whole PACE debacle to the public’s attention.

However, I think his language actually indicates weakness and lack of facility in the English language. It’s generally much more effective to be able to tell someone to f*** off in a genteel manner (think Oscar Wilde). You can get your point across very effectively without your message being lost or distorted in all the upset over profanity.

I’m straddling the fence here - I wish he had said the same things without the bad language. I think it - the profanity - undercuts what he is trying to do. But maybe the story never would have made the news without it? (still straddling!)

 

[snowathlete]

One thing that pisses me off about this media coverage is the story that:

• 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.

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?

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.

Although you can argue that it makes a good story, I do actually think most journalists are decent people and wouldn't print this nonsense if they thought it through and understood what's really going on.

 

[Jonathan Edwards]

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.

 

[Esther12]

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.

I largely agree.

The fact that the poor quality psychosocial research is the stuff which causes the most harm means that patients will, quite rightly, spend more time criticising that than the occaisional biological study that makes exaggerated claims. This might lead some to thinking the the biological research into ME/CFS is further ahead than it is? I agree that the state of our biological understanding of ME/CFS is a distraction from the problems with PACE. If we were certain ME/CFS was a mental health condition, PACE would still be junk-science.

A big part of the SMC 'terrorist ME patients' story pushed to the media was the idea that patients insisted that the cause of their ill health was a virus, and vilified anyone who disagreed. It seemed to me like this was always a myth. There will be some patients who get misguided views about things like that, but generally it seems to me that most patients are aware and accepting of the uncertainty around the cause of their ill health.

Also, I feel like the 'physical' 'mental' thing can end up being totemic of whether patients deserve to be spoken to honestly, or manipulated. Many patients personally experience, and see through, the sorts of manipulative approaches some medical professionals can take towards them as a part of a biopsychosocial understanding of ME/CFS, and see that as defining what it means for ME/CFS to be understood in psychological terms. It's quite reasonable for people to reject that, but I can see this rejection being phrased in ways that leave a danger of really counter-productive misunderstandings. For most people 'psychological care' implies a lovely caring chat, and ME/CFS patient's anger and frustration about how they've been treated can seem mystifying.

 

[RogerBlack]

Journalist getting quite a hard time in the comments section. Doubt she'll use " yuppie flu" again.

It is quite likely the headline was not written by the journalist, and was over the writers objections, if they even knew beforehand.

 

[Wolfiness]

I think our no.1 task is to make it clear that ME can affect anyone and there's very little you can do to prevent it because atm lots of people look down on us as physically or mentally compromised which would never happen to them…

 

[A.B.]

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.

I think it's pretty important. For us, psychological care means being gaslighted and blamed and not getting proper investigation of and treatment for other problems we have that might be treatable.

The kind of psychiatry that created this disaster has no place in the world. And yes it was psychiatry that created this. Sorry if reality is too upsetting for some people.

In fact, every time we hear the "but mental illnesses are real too" line from a PACE apologists it's further gaslighting because they damn well know that psychiatry considers that in this condition patients imagine they suffer from an illness called "CFS" or "ME".

These people seem to suffer from a serious psychiatric disorder themselves, one that involves the compulsive need to gaslight and exploit vulnerable patients and then claim that this is compassionate care for the patient's own good.

So we're going to get gaslighted by them at every opportunity any way. Might as well stop trying to change our behaviour in order to avoid it, and focus on what we can do to make a good case for the biological paradigm of ME/CFS. We have already won at the scientific level: the rest of society just isn't aware of all relevant information, and unfortunately our opponents are well connected and good at marketing.

 

[Wolfiness]

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.

Because the media have always scrupulously noted such crucial distinctions?