• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Cure: A Journey into the Science of Mind Over Body by Jo Marchant

hellytheelephant

Senior Member
Messages
1,137
Location
S W England
It all started so well, then....'But it does hint that their condition might be influenced by psychological factors'
:nerd:EVERY illness is influenced by psychological factors surely.....


In a hundred years from now people won't believe how this kinda crap was the prevailing opinion for such a serious illness.
...And she managed to co-ordinate her accessories- Perlease!!!!:bang-head:
 

Esther12

Senior Member
Messages
13,774
Legitimate question... Who did Peter White (and friends) bribe to continually have this garbaged published again and again?

This has really become absurd!

I'm just shocked!

It's self-replicating: stupid people think that mindlessly repeating this stuff shows that they're intelligent. No need for corruption when British journalism is so shit.
 

Sidereal

Senior Member
Messages
4,856
From the comments:

integrityisall

Just a few thoughts from someone who has studied ME for over 30 years. There's nothing in the story that made me think of this diagnosis. MEpatients are not fatigued all the time. The weakness and other symptoms are exacerbated by minimal exertion. It's therefore a fluctuating condition. Chronic fatigue syndrome does not require patients to experience post-exertional exacerbations. And as the person who first devised and defined pacing, I can state with confidence that it is not the same as adaptive pacing therapy (APT), tested in the PACE trial. It's the failure to check information and the lack of a critical eye that explain not only the anger of patients but also the frustration of scientists like myself.

I too might have suggested CBT and GET for this patient, but that's because I'm pretty sure she did not have ME (as described by experts such as the late Dr Ramsay). In my view, what happened was a combination of overwork, stress (affects adrenal functioning and can result in the type of symptoms described) plus psychological factors. And before I'm dismissed as an ill-informed layman, I have three degrees in psychology, including a PhD.

:lol:
 
Messages
88
Location
Dutchy
whoopsies, my brainfog and me did search for another topic.. (am going to miss blaming everything wrong I do on that once this is over)

not to doubt Ellen (Goudsmit I presume?) but everything the woman says screams to me ME like the viral onset and an ongoing flu so I think when she agreed to GET and correcting her wrong thinking she was already getting better anyway
 

worldbackwards

Senior Member
Messages
2,051
I like the irony of "understated". He must mean understated in the sense of leaving out large chunks of the truth.
Marchant doesn't seem to have much in the way of direct responses on her Twitter page. I wonder why.
I think he meant balanced in terms of being nice about the patient, whilst still throwing in lots of cheap mental health clichés and subtle ways to blame her.
 

user9876

Senior Member
Messages
4,556
After reposting a comment to the guardian saying that moderators should explain why they are censoring patients comments my account has now been set to be pre-moderated. I take that as a statement that moderators cannot justify their censorship.

I've sent this comment to the moderators.

Dear Moderator's

I am very concerned that the guardian is removing posts from patients that are critical of a very poor article that reports some very poor science of which serious concerns are being raised internationally. I find it hard as a long term guardian reader to understand why the guardian would take such action. I think it is a serious issue to try to silence patient voice and running articles like this one that dismiss patients and cause them not to be taken seriously.

I will be writing to the readers editor on the issue of censoring comments (this is not the first occasion that I and others have had comments mentioning the PACE trial censored). And also covering the lack of balance in the guardians coverage of ME.

I will also be cancelling my subscription to the guardian.
 
Last edited:

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
After reposting a comment to the guardian saying that moderators should explain why they are censoring patients comments my account has now been set to be pre-moderated. I take that as a statement that moderators cannot justify their censorship.

The Guardian is a lost cause on this stuff. They never saw an unevidenced homage to the power of mind of matter and miraculous psychosomatic transformation they didn't like.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Looking on the bright side, a stupid article about an appalling book has given us a platform for loads of very well argued and expressed comments. Hopefully those who read the article also read the comments. They put the level of Jo Marchant's writing and Peter White's opinions to shame.