NZ Listener - Ills thought out - Wilson 2019

Hutan said:
I hope that does happen. Even just a telling of the PACE story would be great, and it perfectly illustrates much bigger issues in psychology research.
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I think that's an excellent idea, @Hutan. I might talk to our press office about whether they're interested (I think the answer will be yes!).

Actually, I have just written a piece for the MEA newsletter, which should come out some time this week. It tells a little of the back story behind the PACE reanalysis. Makes for great story telling!
 
Carolyn Wilshire said:
I think that's an excellent idea, @Hutan. I might talk to our press office about whether they're interested (I think the answer will be yes!).

Actually, I have just written a piece for the MEA newsletter, which should come out some time this week. It tells a little of the back story behind the PACE reanalysis. Makes for great story telling!
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Thank you for all you are doing.

Not everyone here will have access to the MEA newsletter. Will they be publishing it on their website too?
 
Carolyn Wilshire said:
Sooo... people with ME simultaneously catastrophise about what's happening and also pretend its not happening... they simultaneously lack perseverance and try way too hard... they simultaneously do too little exercise and overdo activities... these simultaneous paradoxical states are just doing my head in...
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Renamed as .... Schroedinger' s Disease ...
Eta

Or is this a manifestation of a double bind situation ?
 
I understand that some letters to the editor, in response to this 'Ills thought out' article, were printed in this week's listener (my mum, who is in another city told me :) ). Anyone seen them yet? Do they help to balance back to truth?
 
Only the two letters from our members (see posts #2 & #7) were published. I didn't check if they were printed in full but I think so.

There's also a reply from Wilson to @Carolyn Wilshire's letter (attached). It's a bit garbled (Wilson's reply, not Carolyn's letter) and makes one wonder if he somehow managed to not read his own column. In his reply he denies having made any causative claims, yet in his column he had written this:
As with diabetes, MS or even asthma, there's reason to believe that how you think affects the way you experience CFS and, perhaps, even whether you develop it at all.
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Listener letter reply (2).jpg
 
Gretel said:
No scientist should take information out of context and report it as if it has some merit.
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I guess that's a job left to journalists. (I'm quite jaded when it comes to reporting of science...)

Marc Wilson has failed to note that how you think might not necssarily effect disease outcomes, but merely how patient reported outcomes on questionnaires. Likewise, how patients think affects whether they are likely to participate in a study run by a psychology department. Or at the very least this is a major bias of such studies.

Caroline Wilshire suggests "chance variation" could explain the differences between the findings of the Moss-Morris study and others, but other forms of bias could also explain the differences.
 
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Snow Leopard said:
I guess that's a job left to journalists. (I'm quite jaded when it comes to reporting of science...)

Marc Wilson has failed to note that how you think might not necssarily effect disease outcomes, but merely how patient reported outcomes on questionnaires. Likewise, how patients think affects whether they are likely to participate in a study run by a psychology department. Or at the very least this is a major bias of such studies.

Caroline Wilshire suggests "chance variation" could explain the differences between the findings of the Moss-Morris study and others, but other forms of bias could also explain the differences.
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It's been pretty well-established that outlook and attitude have no impact on disease outcome besides maybe a small measure of quality of life. It's been cherry-picked to death for a positive outcome-seeking and it's all garbage. Horrible petulant people die of cancer just the same as happy, worry-free selfless people. At this point it's malpractice to continue promoting this patient-blaming argle-bargle. People don't lose a fight to disease anymore than someone who falls to their death lost a fight with gravity.
 
Ravn said:
I managed to write a letter to the Listener expressing my dismay at Wilson's piece and suggesting they contact @Carolyn Wilshire and @dave30th for a future feature to make up for Wilson's misstep.

My letter wasn't the sort to be published but more a letter of complaint crossed with a tip off for a story.
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After chasing them up for a reply to my letter I eventually got this:
"Thank you for your email. We did receive your letter, and Marc has responded to a similar letter in our May 18 issue.
Thank you for taking the time to write to us.
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Couldn't help myself so I replied again to point out that Marc's response failed to address the key criticism - his column suggesting a causal link between 'dysfunctional' thoughts and the development of ME/CFS - and instead defended his view that one's emotional reaction to chronic illness could affect quality of life, a view nobody had disagreed with in the first place.

I doubt I'll get a response this time and suspect any future emails from me to the NZ Listener will go straight to their spam folder. Ah well, can only but try...
 
The ANZMES letter:

We at The Associated New Zealand ME Society, the national body of ME/CFS support groups throughout New Zealand, would like to draw your attention to our recent media release, as well as a document regarding the new guidelines for GPs that have been sent out through the Royal New Zealand College of General Practitioners.

ME/CFS has long ago been proven to be a physical rather than a psychological illness and is classified by the World Health Organisation as a neurological disorder. Scientific research into this illness is multidisciplinary and has been aided by recent advances in technology, confirming widespread brain inflammation and other measurable abnormalities. A blood biomarker for early diagnosis is near at hand.

We welcome any questions that the Listener or its readers may have and can provide links to the documents referred to above. Please contact our national office at ANZMES at 03 471 6203, info@anzmes.org.nz, or visit www.anzmes.org.nz.
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It's good that ANZMES responded, although they are still suggesting that a biomarker is 'near at hand'. I'd prefer it if they toned down the certainty, but we don't seem to be able to get through to them on that. Of course, one day, they will be right.

I'd also prefer it if they didn't push the 'ME/CFS has been proven to be physical' line. It's easy for the BPS crowd to suggest that our faulty thinking has caused inflammation or deconditioning or something else that's physical. I think the most helpful argument is that there is no evidence that treatments designed to change the way we think or behave cure the illness.

Does anyone have a copy of the new guidelines for GPs that ANZMES mentions? :nailbiting:
 
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