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    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.

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Media coverage of Matthees PACE recovery reanalysis: post links here

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Erik Vogt is making a pathetic impression with his comments trying to promote Lightning Process and trying to justify subjective measures.
I believe you meant Henrik Vogt.

Saint Peter - I like that. And I've learnt a new word because I had to look up "unctuous".
Which definition made the most sense to you?
1. (of a person) excessively or ingratiatingly flattering.
2. (chiefly of minerals) having a greasy or soapy feel.
 
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Yogi

Senior Member
Messages
1,132
https://aheblog.com/2016/10/04/data-sharing-and-the-cost-of-error/

Sam is a health economist.


About
The Academic Health Economists’ Blog exists to provide an on-line presence for the discussion of issues and developments in health economics. We provide a place where people can present their views, opinions, ideas, and takes on current affairs from the perspective of health economics. The site has a simple aim; to promote healthy debate in the field, with a sharing of ideas.
 

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
https://aheblog.com/2016/10/04/data-sharing-and-the-cost-of-error/

Sam is a health economist.


About
The Academic Health Economists’ Blog exists to provide an on-line presence for the discussion of issues and developments in health economics. We provide a place where people can present their views, opinions, ideas, and takes on current affairs from the perspective of health economics. The site has a simple aim; to promote healthy debate in the field, with a sharing of ideas.
@Tom Kindlon you may be particularly interested in this one, I believe you did analysis on the cost effectiveness of the treatments previously?
 

BurnA

Senior Member
Messages
2,087
@Tom Kindlon you may be particularly interested in this one, I believe you did analysis on the cost effectiveness of the treatments previously?

If there actually was no real benefit from the new treatments, then benefits have been lost from elsewhere in the healthcare system. If we assume the NHS achieves £20,000/QALY (contentious I know!) then the health service loses 0.05 QALYs for each patient with chronic fatigue syndrome put on the new treatment. The prevalence of chronic fatigue syndrome may be as high as 0.2% among adults in England, which represents approximately 76,000 people. If all of these were switched to new, ineffective treatments, the opportunity cost could potentially be as much as 3,800 QALYs.
 

Countrygirl

Senior Member
Messages
5,476
Location
UK
This caught my eye......................

https://www.mailman.columbia.edu/pu...ns-raise-concerns-over-cancer-screening-study

The two biostatisticians say the UKCTOCS researchers deserve credit for organizing such a complex and ambitious study, and were suitably cautious in their reporting. Others have raised the possibility of financial bias in the Lancet paper: Ian J. Jacobs, one of two lead authors is also a co-inventor of ROCA and has a financial stake in its success. But Levin says in no way do the study’s shortcomings rise to the level of fundamental errors of the kind he recently helped expose in the PACE trial for myalgic encephalomyelitis (a.k.a. chronic fatigue syndrome).
 

Cheshire

Senior Member
Messages
1,129
Not about PACE, but another article where it is mentioned as an example of bad practice:

Can scientific evidence be valid if irrelevant to patients?

International Journal of Care Coordination - editorial

Imagine a situation where researchers publish their study in a renowned scientific medical journal. As a result, in many countries, the study findings get adopted in medical guidelines and subsequently enter practice rooms and become part of interaction with patients. However, soon after the publication, patients start questioning the validity and the relevance of the study findings based on their own experiences. How do you think the researchers responded? Share study details including data to sort out all questions raised? Or hide behind the peer-review policy of the journal and disqualify critics as being sociopaths?

http://m.icp.sagepub.com/content/19/1-2/3.full.pdf
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Can scientific evidence be valid if irrelevant to patients?
International Journal of Care Coordination - editorial
This is about PACE:

If you think the above is history or fiction, then this may be your wake-up call. In August 2016, a judge has rejected a university’s attempt to prevent release of data from the controversial PACE trial.
 

trishrhymes

Senior Member
Messages
2,158
A French article (quite old, I forgot to post it...) in an obscure web site
https://actualite.housseniawriting....e-sur-le-syndrome-de-fatigue-chronique/18268/

Good article, Google translate is hilarious:

The mistakes of a scientific study on Chronic Fatigue Syndrome

The case of the clinical trial PACE on Chronic Fatigue Syndrome shows that even a scientific study with a large sample may be poor and exaggerated results. The authors of the study had exaggerated their interpretation and it has deceived thousands of people suffering from this syndrome.

Thee Chronic fatigue syndrome (CFS) affects approximately 2.6% of the world population. Despite the fact that millions of people touch, the disease is still relatively unknown and a very dubious scientific study deceived patients for years. Note that chronic fatigue is recognized as a disorder, but for years it was only recognized by psychiatry. Therefore, if you are diagnosed with chronic fatigue syndrome , then your doctor will prescribe two treatments, the progressive realization or monitoring of therapy.

In 2011, a clinical trial called PACE was published in The Lancet . This study was conducted by researchers from the Queen Mary University of London .This clinical trial observed 641 patients for 52 weeks and therefore, the sample size was very important. The researchers reported that patients affected bychronic fatigue , had a 60% chance of having improvements and a 20% chance of being cured. 60% chance of improvement and almost 20% chance of healing? These are good results in appearance.

The problem is that patients were not convinced by the treatments and they questioned the results of the study. Patients report that their symptoms worsened considerably if they were exercising even at moderate levels. And in the case of therapy, it was not just any, but the cognitive behavioral therapythat is often criticized. In the case of patients with chronic fatigue, the therapist will suggest that there is no physiological cause behind this syndrome and thateverything goes in their head . In this context, the therapist will simply ask that patients ignore their symptoms and continue to exercise.

The problem is that in 2015, a panel of doctors classified chronic fatigue syndrome as a biological disease . And in 2016, researchers reported thatthe disorders in the intestinal microbiome may be associated with chronic fatigue . But despite increasing evidence that chronic fatigue is a real disease, there is still almost no treatment other than those recommended by psychiatry.

Therefore, the clinical trial patients PACE asked what scientists of the Queen Mary University of London published their raw data of the studies. The university has repeatedly denied and it took a court order to force the authors to do .Patients were amazed that the results of a study with a large sample contradict their own experience of treatment. Then, independent scientists analyzed the raw data . The results? The chances of improving through the year, were barely 10% while the chances of recovery increased from 20 to 7% for therapy and 5% for the year . Very, very far from the 60% and 20% announced by the authors.

Independent researchers estimate that the 2011 study is really poor. In the sample size, the authors also incorporated people who did not have chronic fatigue syndrome which results rotten. In addition, the clinical trial was not double blind causing huge confirmation bias. Obviously, this independent analysis should be evaluated in turn, but the researchers said they were open to criticism. But they challenge the authors of the original study to explain such a difference in the numbers.

If the analysis is confirmed, then it will have the dubious scientific study be retracted. But the withdrawal is a drastic punishment for perpetrators and the university. And even if that happens, the damage is already done. Exercise and therapy entered the practitioners manners and it will take years for mentalities to change. Today, the chronic fatigue syndrome is considered a fun way by the media treated the news. As if it were a shameful disease.
 

Yogi

Senior Member
Messages
1,132
https://aheblog.com/2016/10/04/data-sharing-and-the-cost-of-error/

Sam is a health economist.


About
The Academic Health Economists’ Blog exists to provide an on-line presence for the discussion of issues and developments in health economics. We provide a place where people can present their views, opinions, ideas, and takes on current affairs from the perspective of health economics. The site has a simple aim; to promote healthy debate in the field, with a sharing of ideas.