PACE sticking to their lie

[Tina]

I just want to cry or punch something. I can't decide. Maybe I will do both.

PACE is doubling down. I fear that unless or until the pathology of our illness is found we will never be believed and we may never get proper funding. They and Lancet care more about protecting their reputation at this point. As we have seen in politics, it seems all you have to do is drag something out long enough and continue the lies with word games and it can get you very far indeed.
https://www.theguardian.com/comment...tients-suffer-put-off-treatments-our-research

 

[Hope]

@Tina, check out the comments though. They're overwhelmingly critical of the article and some are very well written. I think this is White's last-gasp attempt to salvage his rep which is going down the tubes.

 

[Cort]

I just want to cry or punch something. I can't decide. Maybe I will do both.

PACE is doubling down. I fear that unless or until the pathology of our illness is found we will never be believed and we may never get proper funding. They and Lancet care more about protecting their reputation at this point. As we have seen in politics, it seems all you have to do is drag something out long enough and continue the lies with word games and it can get you very far indeed.
https://www.theguardian.com/comment...tients-suffer-put-off-treatments-our-research

Yah --I think this is going to backfire on Peter White. I think it was a big mistake by him but we shall see. He clearly thinks he can salvage the situation by doing this - either he's very naive or he knows something we don't know..

We shall see!

It's funny but I met Peter White at a conference and he was one of the nicest researchers I've ever met - funny, well-balanced - I really liked him personally. It's sad the way this has turned out in so many ways.

 

[Cort]

Darn - they closed the comments...

Notice that for the first time White is suggesting that the PACE trial could be rejected...

I am with White on one thing; so long as CBT and even GET (done appropriately - without causing PEM) are done correctly and don't deny the reality that a serious illness is present I don't have a problem with either.

Both are fairly reasonable responses to having any chronic illlness - just don't posit them as doing anything more than being able to help some people manage their illlness.

Unfortunately the UK put all its eggs in the CBT/GET basket and all that funding relative to the little funding for other treatments meant that White can say things like CBT/GET are the most effective treatments for ME/CFS. How could they not be when no other treatment has been tested more than once?

 

[Cort]

We'll see what happens when the statistical analysis of the PACE trial gets published. I imagine that the you know what will hit the fan then.

 

[Tina]

@Hope I hope and @Cort are correct. The alternative would be awful.

The evidence that this study was completely flawed is so obvious that the denials are almost like living in an alternate reality or something like 1984.

The quote I am thinking of from 1984:

The party told you to reject the evidence of your eyes and ears. It was their final, most essential command. His heart sank as he thought of the enormous power arrayed against him, the ease with which any Party intellectual would overthrow him in debate, the subtle arguments which he would not be able to understand, much less answer. And yet he was in the right! They were wrong and he was right.

 

[Cort]

@Hope I hope and @Cort are correct. The alternative would be awful.

The evidence that this study was completely flawed is so obvious that the denials are almost like living in an alternate reality or something like 1984.

The quote I am thinking of from 1984:

I agree that its really unsettling to see people act with such a lack of integrity...

 

[Empty]

Yah --I think this is going to backfire on Peter White. I think it was a big mistake by him but we shall see. He clearly thinks he can salvage the situation by doing this - either he's very naive or he knows something we don't know..

We shall see!

It's funny but I met Peter White at a conference and he was one of the nicest researchers I've ever met - funny, well-balanced - I really liked him personally. It's sad the way this has turned out in so many ways.

"One of the nicest researchers I've ever met -funny, well-balanced - I really like him personally."

We here were just commenting today about the worst little $!)@?())@@ we have ever met are the so called charming well balanced positive people.

It just doesn't conform with the law of attraction theory!

 

[Justin]

Well CBT and GET done properly as mentioned by @Cort there is no info in any other place in the world on how to do this.

Further the study stunted all research into biological research. And the treatments are found to be ineefective.

It also misses 25% of those that cannot get out of bed or their house but they still have ME.

Then I must say how many people did not have correct medical workups which just resulted in an ME DX that actually had a treatable neuro condition from the get go and as a result are irreparably damaged from this.

You want to talk about bad science there are countless autoantibodies and treatable encephalopathies that may have been missed along with cancers etc....but look you have ME so we will just stop all testing now....

Just terrible. There should be reprecutions as a result of this study and people should be held accountable. No excuses....they made a mistake...appoligize for it and figure out how to rectify it.

And make the money available for the disease burden.