PatientsLikeMe doing a CFS/FMS survey for Petrie (major psychobabbler)

floydguy

Senior Member
Messages
650
Likes
239
Actually, psychiatrists are real doctors; they are M.D.s-- they go to medical school and then extra years of training. Most of them just do medication now days. I happen to be married to a psychiatrist who still does therapy with people and actually helps them ... :) And he's the doctor who told me I have ME/CFS. (He used to work with chronic pain patients and multiple personality patients-- so he's used to illnesses/conditions that other doctors don't believe in.)

Anyway, yeah, most of them are probably messed up and the profession certainly hasn't done a lot for us ... but just wanted to say there's at least one shrink on our side ... thanks.
Yes, I guess that goes along with what do you call the sad sack who graduates last in his med school class? Doctor! Yes, unfortunately they are "real" doctors but most are not practicing "real" medicine.
 

Dolphin

Senior Member
Messages
17,559
Likes
28,261
If I recall correctly, patients from ANZMES* were used for one or more of the Moss-Morris/Petrie studies. So not sure all flaws in his research and how he interprets data he/they collect can be put down to that.

* National ME Group in New Zealand
 
Messages
44
Likes
8
Location
UK
Really shocking - it's all so blas and basic. A simpleton could have come up with those tests, and there's nothing conclusive there! I don't understand the catastrophic thinking thing - if only some of the CFS sufferers displayed catastrophic thoughts (which is understandable given some symptoms), then what about the rest of them? Were they actually normal, cheerful, laid back people who are going through a horrible illness but chose not to make too much of a thing of it, by any chance?!

Bizarre, and scary.
 

justinreilly

Senior Member
Messages
2,498
Likes
1,226
Location
NYC (& RI)
It's pretty sad to see the thankful trusting responses of some of respondents about how they've been so victimized, but now they are so thankful that someone actually cares about them enough to study them.

I put my letter and a link to here on the thread. and pm'd one of the people. it pisses me off that these frauds have no conscience.
 

Angela Kennedy

Senior Member
Messages
1,026
Likes
146
Location
Essex, UK
RESULTS: Although CFS patients were significantly slower in colour naming all of the Stroop word categories than controls, there was no evidence for illness or depressed words creating greater interference than neutral words. However, on the ambiguous cues task, CFS patients made significantly more somatic interpretations than controls and this bias was significantly associated with the extent to which they currently reported symptoms.

CONCLUSION: CFS patients have an interpretive bias for somatic information which may play a part in the maintenance of the disorder by heightening patients' experience of physical symptoms and helping to maintain their negative illness schemas. Although patients did not show an attentional bias in this study, this may be related to the methodology employed.


This conclusion is preposterous! I can't understand how the 'study' got published. It is pure conjecture. The only possible conclusions are:
1) CFS patients executed the task more slowly than controls (possible conclusion - they're brain damaged)
2) They have no preference for 'depressed' words (possible conclusion: they're not depressed)
3) They have a preference for body-or illness related words (possible conclusion: they don't feel too well)

These psychs should repeat their 'study' with a group of malnourished people. I bet they'd show a preference for food related information 'which may play a part in the maintenance of the food obsession by heightening patients' experience of hunger and helping to maintain their negative nourishment schemas'
Good points. Attribution studies are always very dodgy for reasons like this: and I would say the neurological damage is a particular confounder in these cases.

Also - well done those who have been bringing this to the Patientslikeme people's attention.
 

Dolphin

Senior Member
Messages
17,559
Likes
28,261
With the link to this thread, hopefully PatientsLikeMe will have looked at the comments (some of the other people on their forum probably have anyway) so well done everyone.
Hopefully PatientsLikeMe will be more careful in the future and will also have a close look at how Dr. Petrie writes up anything.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Likes
4,833
Location
WA, USA
the other thing PLM needs to know is that ME is not merely a variety of FM. They don't even list Fukuda-diagnostic S&S for CFS. Not as important as staying away from Moss-Morris collaborators, tho
 

leela

Slow But Hopeful
Messages
3,279
Likes
7,327
Location
Couchland, USA
Great work, Justin, on all counts!

Those studies made me want to puke--but oh wait, that catastrophizing and somatizing!

Seriously, I am amazed 1100 people signed on for the BS.

What makes me sad (uh-oh--I must be depressed) is that they could not even allow that people who experience disabling symptoms for years on end might, just might, have very good reasons to attribute medical/physical meanings to ambiguous words. And one of those reasons might be that we spend a lot of time educating ourselves and doing research because few serious medical people are willing to do it for us!
Ack! <tearing out fistfuls of hair> --oh wait, that's hysteria, like Incline Village :Retro mad:
 

Dolphin

Senior Member
Messages
17,559
Likes
28,261
:thumbsup:

justinreilly,

Thanks for your thoughtful responses on the PLM forum. Very much appreciated. Sorry I haven't been able to contribute but have a lot on.

For anyone has read any of Petrie's studies through: it'd be great if you could contribute. In particular, I'm sure there are a lot more quotable bits from some of his papers.

:thumbsup:
 

justinreilly

Senior Member
Messages
2,498
Likes
1,226
Location
NYC (& RI)
The upshot of the discussion was that Jamie, the chairman of PLM said the study design was already approved, they'll go forward with it, but that PLM has input into the final paper and they won't let anything shady happen and they'll publish it in full on the website.

So, time will tell. I think this was a good effort to raise their awareness. It seemed they were totally clueless about the fake 'science' that goes on in ME.
 

Dolphin

Senior Member
Messages
17,559
Likes
28,261
In the latest PatientsLikeMe survey [on telling people about your diagnosis (I got a PM inviting me)], ME/CFS was down as a separate category from fibromyalgia. This may be as a result of people's recent comments (on top of previous comments I presume some people had made)
 

justinreilly

Senior Member
Messages
2,498
Likes
1,226
Location
NYC (& RI)
I asked PLM if they had asked the survey participants by which definition they were diagnosed and explained the fake definitions.

Dr. Wicks replied that no they didn't and that he was sure i'd agree that not asking was the right thing to do!

He did agree to divide it up by country as a rough proxy.

I asked him not to include British patients in any data upon which conclusions would be based and also to vet the study with patient experts before publication.