PACE DATA HAS BEEN RELEASED!

Remy

Administrator
So am I reading this right...are they basically doubling down on saying CBT/GET works?? Albeit at a much lower rate than originally purported?
 
Last edited:

Tina

Well-Known Member
So am I reading this right...are they basically doubling down on saying CBT/GET works?? Albeit at a much lower rate than originally purported?
@Remy I am not surprised that QMUL will try to do this.
These re-interpreted results were released without fanfare on QMUL’s own website. Despite the dramatic fall in improvement rates, the study authors said that the outcomes were “very similar to those reported in the main PACE results paper” and supported their Lancet conclusion that CBT and graded exercise, added to standard medical care, “moderately improve” outcomes for CFS patients.
But hopefully the damage to the PACE Trial has been done. Hopefully the powers that be will see that the emperor has no clothes. This study was garbage through and through. What I will be interested to see is what does LANCET do? Will they retract it? Will the CDC and UpToDate and others update their recommendations which are all based on a bogus study?
 

Tina

Well-Known Member
Are the people who "responded" diagnosed with MECFS based on a legitimate criteria? Who are they basing these results on? (sorry I'm sure this has been talked about before but I can't remember).

Even people I know who are high functioning still have to really watch what they do.
This was a terrible study. We all understand that it is important which definition of ME/CFS is used and your point that one can be "improved" on many measures simply by never leaving your house and limiting activity. But that is not the main point of this short article on MEAction or the fact that QMUL was legally forced to release their data. And
even with the subjective measures used, only one patient in ten reported improvement from the addition of graded exercise therapy. Results for the CBT group were similar to those for the graded exercise group.
 

Tina

Well-Known Member
That's not what I said, or what I meant to imply. I just wondered who they used in the study, which I know is horrible, that had an 80% response rate and commented that I know plenty of high functioning pwcfs who still have to watch what they do. I never said people improve by never leaving the house or limiting activity. What I said was:
I thought I was agreeing with you?

But here is some info on patient criteria, if that is what you were asking for? I apologize in advance if it is not what you were asking for:
Who was included in the trial?
The original design of the study seemed poised to get some good answers. But problems started early during the recruitment process. It turned out to be more difficult to find appropriate patients who were interested in participating in the study than expected, and so the PACE researchers allowed patients with a higher level of physical function to enter the trial. This tweak was the first of many, each of which had the effect of improving measurements of success, regardless of how the patients fared.
Patients had to meet many criteria to be included in the trial, notably the following:
  • Have chronic fatigue syndrome. Patients had to meet the Oxford criteria for CFS, which includes a broad range of people who feel very tired: Patients must suffer from severe and debilitating fatigue for over six months, and fatigue must be the main symptom of their problems. Depression, which can cause prolonged fatigue, was acceptable as a co-morbid condition, and was in fact quite common among the patients who were eventually included (33 percent). In addition, patients could not be diagnosed with another medical issue known to produce chronic fatigue, nor suffer from psychosis, bipolar disorder, substance misuse, an organic brain disorder, or an eating disorder.
  • Have significant self-assessed fatigue. Fatigue was measured using the bimodal Chalder fatigue scale, which is discussed in some detail below. Patients had to score six or higher (out of 11) on this scale to enter the trial. The higher the number, the more fatigue a patient experiences.
  • Have poor self-assessed physical function. Physical function was measured using the the short form-36 physical function subscale. For entry to the study during the first 11 months, one had to score 60 or below[2] out of 100; this threshold was changed to 65 or below during the trial, to recruit more patients. The lower the score, the worse physical function a patient has.
  • Be able to travel to the hospital for treatment. This simple rule immediately excluded some of the sickest patients from participating in the trial, thus making any results generalizable only to the more functional patients with CFS.
The first issue with these criteria, as Tuller noted in the New York Times back in 2011 when he first started looking at PACE more closely, is their use of the Oxford definition, which requires no symptoms specific to the illness beyond fatigue. Most importantly, it doesn’t require the symptom that most experts consider the hallmark of the disease: the exacerbation of all other symptoms after exercise, or post-exertional malaise. It also doesn’t require other symptoms such as cognitive, sleep, or blood pressure regulation problems, nor neurological or immune problems. The Institute of Medicine cites several of these as “core symptoms” for ME/CFS. As a result, many specialists worry that PACE includes patients who suffer from other fatiguing illnesses but not ME/CFS, as described by other standard criteria.
http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/
 

bobby

Well-Known Member
@Who Me? I think they used the oxford criteria, which are probably among the very worst criteria where anyone and their (not even actually sick) mother can get a CFS label.

that's how they got a decent % of people 'recovered' (cause some didn't even have ME/CFS), but as it turns out now, it wasn't even a decent %. the effect was probably not better than placebo.
 

Tony L

Active Member
I am not usually a vindictive person but I hope these fools go on to feel the full wrath of the scientific community for what they have been involved in here.

Not sure what they hoped to achieve by publishing this revision on a University website. They have brought science into disrepute and deserve all the criticism that is coming their way.

Hopefully the Lancet will act immediately and publish a statement.
 

Get Our Free ME/CFS and FM Blog!



New Threads

Forum Tips

Support Our Work

DO IT MONTHLY

HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT

Shopping on Amazon.com For HR

Latest Resources

Top