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(Deutsch/German) Second Huffingtonpost.de article on the PACE Trial
- Thread starter Dolphin
- Start date
I won't post the German text as it might take away from the hits, but here's an English translation from Bing Translator:
Under the heading "study on the fatigue syndrome: when science fails" I reported on the 31.10.2015 of the scandal around the study of PACE trial.
According to the results of the study help that treatments talk therapy(CBT/cognitive behaviour therapy), as well as increasing physical activity(GET/graded exercise therapy) in the disease of ME (Myalgic encephalomyelitis, is often also called chronic fatigue syndrome).
The health expert and journalist (among other things The New York Times) David Tuller had stated in several articles, how exactly when this study was taken for a ride. When it was shown during the trial that the treatments at ME not, how wanted and at the beginning of the study already announced, help or lead to a cure, the psychiatrist changed to reach the final of the study. The goal should be achieved at the end of the study, was now lower than the initial value. Thus, it was possible to evaluate a deterioration of the condition as treatment success.
The study, a joint project between scientists of the Queen Mary University of London, the Oxford University as well as the King BB´s College in London, was released in March 2011 in the renowned medical journal the Lancet. It is now the largest study on the subject of treatment of ME (ill 17 million worldwide,300,000 people in Germany).
You can support the petition to the claim that the study PACE trial is withdrawn, continue here.
Scientists confirm alleged study achievements
Shortly after David Tuller’s revelations psychiatrists published a follow up study to PACE trial which says that the study participants even two years after the allegedly effective have maintained their State treatments of the study. This resulted in a questionnaire that was sent to almost all the study participants.
Some newspapers, mostly in the UK, wrote a laudatory article on the follow-up study and reported that positive thinking and movement cure the disease. However, this reporting called other people on the plan, which took on the issue, looked at closer PACE trial and also came to the result that it went to this study not with the right things.
University of London Queen Mary was from the information Commissioner's Office (data protection officer of the United Kingdom) prompted trial to a complainant, who was not named, to release the anonymized data from space. The University turns across and justified its refusal of the publication among others so that's about go not only to a debate by research, but also to the integrity of the researchers of this study. In addition, researchers expressed concerns that could be made available to the data of the study participants and the sick as a result will be exposed.
Professor Coyne also finds inconsistencies in PACE trial
Professor James Coyne (Professor of psychology, one of the most cited psychologists around the world) are also publicly switched on and University scientists, as well as the Queen Mary, urged to release the study data. He had become involved after publication of the follow up study in the debate and called the data uninterpretable. Also, he said's work, as they would have used Voodoo statistics relating to incomplete follow-up data.
After Prof. James Coyne the study data had asked, citing the data sharing policy that trial in the online journal PLOS ONE (international online trade journal of the public library of science) apply to the publication of the study of PACE, he received a rejection response.
Was founded in this among others with the note, the University considers, that no serious intention, stick and polemic behind the request. Behind them were improper motives, will believed.
Then, PLOS ONE released a statement that Prof. Coyne’s data request will examined. Because the guidelines for publication in PLOS ONE state that authors must give their consent, all data and information related to the study published in context, to make freely available on request.
Study data are still kept under lock and key, questions remain unanswered
An open letter to Richard Horton (editor of the Lancet) was published, signed by six leading researchers in November 2015. Prof. Ron Davis (Professor of Genetics) is one of the scientists who signed this letter. They demanded that an independent re-analysis of the study data.
As the editor of the Lancet, Richard Horton, did not respond to the open letter, Prof. Ron Davis wrote University on 17 2015, together with three other scientists, a further open letter to the Queen Mary. He repeatedly asked about the data relating to the study, citing the freedom of Information Act (Act of freedom of information).
Also David Tuller stayed at the thing off and wrote another report, in which he published his 68 still unanswered questions, the he has for over a year on the PACE trial authors.
Already in December 2014, had he written Peter White, Michael Sharpe (principal author of the study) and Trudie Chalder, and asked for a meeting. Dr. White said in his reply that a conversation would not pay.
Why is the renowned journal cross?
Also Prof. Andrew Gelman (Professor of statistics and political science) had now switched to the debate and warns that the Lancet risked his reputation with his refusal to correct errors. He thinks that no study will ever be published where itis possible to evaluate a deterioration than improvement.
Even if according to the Editor Richard Horton, the study before publication went through endless rounds of peer review, it was online marked "Urgent procedure", Prof. Gelman said in one of his articles. Already early December2015, Prof. James Coyne reported that the authors of the study had denied to date 14 requests the data release.
According to Richard Horton in a radio interview from the year 2011, cost the whole annoying claims in the form of questions that came over the years, and the Attorney's fees, 750,000 British pounds. This was financed by tax dollars, the study itself was funded by tax dollars.
Further inaccuracies come to light
Now an analysis has written David Tuller, together with the journalist Julie Rehmeyer, where they perform more inconsistencies, which can be found in the study. You refute the claim of the authors of the study, that increasing physical activity is a safe treatment method for people with ME. The therapists who serviced the area of increasing physical activity during the study were instructed, for example, to see a worsening of the condition the study participants as a natural response to increased activity.
Fact is, however, that for ME the body/body is no longer properly able to generate physical energy. Also, physical/mental effort sustained further aggravated the health. The deterioration is a main feature of ME for, and has even a name, physical/mental effort: post exertional malaise. Thus, the deterioration in these cases is not a good sign or a natural reaction, but a cause for alarm.
Originally, it was planned that the subjects wear an Aktometer (instrument for detecting the locomotor activity), which however was rejected, although this is usually common in such a study. Thus could cannot verify so even if the physical activity was less or more.
Who are the real losers in this debate?
While the debate goes further and people like David Tuller, Prof. James Coyne and Prof. Ronald Davis continually raise your voice for people who no longer are able to fight for themselves, the biggest losers are the people who are suffering from ME still.
Prof. Ron Davis (including geneticist and Director of the "open medicine Foundation", three Nobel Prize winners belong to their advisory boards) is one of the people who stand up for the research and for the patients. But this has a sad background.
Prof. Davis (74 years old) experienced the nightmare that causes the disease, every day up close: his son, Whitney Dafoe (31 years) is also ill in ME, he is unfortunately one of the Schwerstbetroffenen. Before his illness, Whitney was a photographer who has won prizes and traveled all over the world. He was involved in the construction of a monastery in India and took the motorcycle through the Himalayas. In addition he worked on President Obama's presidential campaign in 2008.
Recently, Professor Davis reported that his son told him on the morning that he died. Because Whitney is no longer able to speak or write, he said this about Scrabble letters.
Whitney told his father that he gives his permission to go (even though he knows that this will further worsen its condition as a result of the strain) in the hospital, because a medical intervention is necessary, because Whitney is no longer able to eat food. Because it is too exhausting for his son to be approached, his father could not answer him.
Prof. Davis reported that he must quickly find the cause and a treatment option, because time is running. There are too few researchers, ME to a few specialists, too few research funds and too many patients. He works 7 days a week.
The story of Whitney Dafoe and his parents can in addition to two other ME patients, in the 11-minute short-docu "invisible illness stories of chronic fatigue syndromes" see. Whitney's mother, because her son needs 24-hour care, is bound to the House. She tells that it is a never-ending nightmare, is getting worse and worse.