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NYT: "Getting It Wrong on Chronic Fatigue Syndrome" by REHMEYER and TULLER

keenly

Senior Member
Messages
814
Location
UK
The thing is what happens in USA isn't rocking boat in uk. It isn't just the PACE authors who won't want to u turn , but the journals, the NHS, the press like bbcs tom fielding who's presented the ilness as psychiatric and who've revelled in the "controversial illness /militants patients narrative '. No ones going to want to admit that the MRC and NHS and themselves had it wrong and that those Whiney people they were advising to exercise were actually very sick with legitimate grievance. And even the current head of the royal colleges of psychiatrists was actually completely wrong.

It's like the church can't admit the Bible is wrong on homosexuality because then their and it's authority is diminished and up for question

Who really runs the NHS? Do they benefit from real treatments?
If the medical establishment push the phony narrative that ME/CFS is all in the head, who benefits?
I think we have to be very positive, but also be aware of more sinister goings on. Ice Cube said it best.
 

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Keela Too

Sally Burch
Messages
900
Location
N.Ireland
Wait just a little while. Things are happening, but the people involved need space to get things right. It looks as if Julie and David may indeed have got the snowball on its way - no mean achievement.

Excellent.

I'm starting to feel a change in the whole mood around ME. I'm seriously hoping it is not just wishful thinking on my part, but I think there are now so many groups making waves about the situation that a storm is starting to break. Here in NI we are doing our little bit too.
 

Jan

Senior Member
Messages
458
Location
Devon UK
To quote @charles shepherd on MEA fb

Charles Shepherd There are also a number of critical commentaries on the PACE trial being prepared for publication in a leading UK medical journal. I cannot say any more at this point but this UK coverage will add to the pressure on Psychological Medicine to carry out an independent analysis of the data in the recovery paper that they published. Dr Charles Shepherd - Hon Medical Adviser, MEA
 
Messages
2,391
Location
UK
Excellent.

I'm starting to feel a change in the whole mood around ME. I'm seriously hoping it is not just wishful thinking on my part, but I think there are now so many groups making waves about the situation that a storm is starting to break. Here in NI we are doing our little bit too.
No, I do not think it is wishful thinking. There are times you can stand in the open air and just sense from the stirring breeze and the scudding clouds that a storm is coming. Well I really do sense there is a storm coming, that the PACE trial pirates will struggle to find safe harbour from. It is not just the fact things are happening, but the ever-increasing pace that things are happening. Exponential growth (the snowball effect as I am sure most people here know anyway) starts agonisingly slowly and can seem for ages like nothing is ever going to change. And even as the rate of change slowly ramps up it can still seem terribly slow. But as the rate steadily and relentlessly increases, it gives a good clue that something is on the way. I really believe we are at the knee of the curve.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Oh how I love a good mystery! :D
And I love a good logical puzzle. I've just run it through the following algorithm:

if (!generalObservation) {
tangibleThingsGoingOnBehindTheScenesThatYouCantTalkAboutYet = true;
} else {
tangibleThingsGoingOnBehindTheScenesThatYouCantTalkAboutYet = false;
}

and I think I've got the answer.
 

JamBob

Senior Member
Messages
191
Excellent.

I'm starting to feel a change in the whole mood around ME. I'm seriously hoping it is not just wishful thinking on my part, but I think there are now so many groups making waves about the situation that a storm is starting to break. Here in NI we are doing our little bit too.

I'm feeling hopeful too. I used to view the BPS crew as nasty tyrants but lately I have come to view them as the underdogs in this situation. I genuinely feel sorry for them because they've built their careers and reputations on a sham. Their house of cards is about to come tumbling down.
 
Messages
2,391
Location
UK
I'm feeling hopeful too. I used to view the BPS crew as nasty tyrants but lately I have come to view them as the underdogs in this situation. I genuinely feel sorry for them because they've built their careers and reputations on a sham. Their house of cards is about to come tumbling down.
Like so many things, it is the bad extremists within any ideology that screw it up for the rest. I am not at odds at all with the idea of mind and body being in harmony, and that in some ways our minds can influence our physical health. I do not really know much about BPS but I would not be surprised if its original concepts might have some sense in them, but much abused by others later? The idiots (powerfully influential idiots unfortunately) who insist that everything and anything physical they can possibly shoehorn into their self-serving dogma has to be mental in origin. But of course that does mean that if there really are any decent proponents out there of a more rational form of BPS (is there one?), then now is the time they really need to stand up for honesty and truth, and decide which way they want history to judge them.
 

A.B.

Senior Member
Messages
3,780
I do not really know much about BPS but I would not be surprised if its original concepts might have some sense in them, but much abused by others later?

Form your own opinion
https://en.wikipedia.org/wiki/Biopsychosocial_model

The idea that disease outcome is the result of the interplay between biological, psychological and social factors is nice, but attempts to affect disease outcome by working the psychological and social factors never really seems to work out. I think investing resources according to a biomedical view is a better use of them.

Historically, the BPS model seems to mostly have been a way for psychiatrists trained in psychoanalysis to justify their existence after psychoanalysis had been discredited.

Then the insurance industry realized it could be used to explain away chronic conditions whose biological basis is poorly understood.
 
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antherder

Senior Member
Messages
456
I wonder if we will see large scale legal action by GET victims. If it is demonstrated that the mitochondrial problems can result in exercise being very harmful, and that patients were for twenty years trying to tell authorities and researchers that exercise is harmful only to be ignored, and that maybe PACE even covered up harm, then yes we may well see legal action.

Please forgive my ignorance if this has already been discussed elsewhere, or if it is just not feasible, but could patients who have been harmed by GET make a complaint via the Human Rights Act?

I realise this wouldn't be easy, and probably pointless anyway, but even just lodging a complaint against the medical practices that are implementing GET, might make some waves. Especially if more than one person did it.

I don't know anything about the complaint options in the UK, or if you need to hire a lawyer before you can complain.

I guess it may be too early for such an approach anyway, and it may be better to wait until more evidence from current research is gathered.
 

GreyOwl

Dx: strong belief system, avoidance, hypervigilant
Messages
266
I'm feeling hopeful too. I used to view the BPS crew as nasty tyrants but lately I have come to view them as the underdogs in this situation. I genuinely feel sorry for them because they've built their careers and reputations on a sham. Their house of cards is about to come tumbling down.
Why would you feel sorry for them? Normal people who are just not that smart accept their limitations, not chase patronage by groups with conflicted interests in order to pursue confected glory in their field. What did they think was going to happen?

Sorry if that's overly nasty or poorly expressed.