I finally got around to collating the survey data in my 2011 paper that the draft IQWIG report (in Germany) refers to. This could be used in 2 ways. People could refer to it in their own submissions and/or I would be willing to write a short comment if I knew there was somebody who could translate it into German for me (and ideally could help me do the format they wanted for a submission) Hopefully there are no significant errors. As I highlighted in the original, sometimes I was working from percentages so there could be some small variations in terms of figures not adding up exactly to totals. The Excel file is available here in case anyone wants to see and/or check the details https://www.dropbox.com/s/mpafhotjbzhcynn/Kindlon 2011 Table2 updated with no change and improvement data.xlsx?dl=0 This image file is also available here: https://www.dropbox.com/s/33j7zqkxn5yc8to/Kindlon 2011 Table2 updated with no change and improvement data.PNG?dl=0 I have attached the original paper. Unfortunately there was no real way to do a systematic review of all survey data. ---- Some of the data was not relevant to my paper so wasn't included in the paper so I had to look back at the original sources. I came across one error in the data I presented in my original paper. This data wasn't particularly relevant for what I concentrated on in my 2011 paper, which was the rate of harms. But it does become relevant when one starts calculating the rates of improvement. I gave higher figures for the rate of improvement for CBT than the survey data actually reported. M.E. Association [28] 2010 Cognitive Behavioural Therapy (n=997): A lot worse: 7.9% (79) Somewhat worse: 11.6% (116) No change: 54.6% (544) Improved: 27.0% (269) Improved: 23.1% (230) Greatly improved: 11.6% (116) Greatly improved: 2.3% (23)
An earlier post to the forum discussed what was said about my review: https://www.s4me.info/threads/germa...-by-11-november-2022.21266/page-4#post-442339 On page 157 of the report (177 of the PDF) they seem to use the 2011 review of patient surveys by Tom Kindlon to argue that a lot of patients felt improved after GET and that the reports of harm were not that striking. @Tom Kindlon The translation reads: "Furthermore, other interpretations can be derived from the publication of the Irish ME/CFS Affected Persons Association [132] than those of Friedberg et al. as demonstrated by the following results. In the cited patient surveys on GET, between 28.1% and 82.0% of respondents reported that their condition worsened after GET, but also between 13.1% and 60.8% of respondents (own calculation) reported that their condition improved. In the patient surveys for CBT, between 7.1% and 38.0% of respondents indicated that their condition worsened after CBT and between 7.0% and 56.9% of respondents (own calculation) indicated that their condition improved." Here's the original text in German: Zudem lassen sich aus der Publikation des irischen ME/CFS-Betroffenenverbands [132] auch andere Interpretationen ableiten, als die von Friedberg et al., wie die nachfolgenden Ergebnisse demonstrieren. In den zitierten Patientenbefragungen zur GET gaben zwischen 28,1 % und 82,0 % der Befragten an, dass sich ihr Zustand nach einer GET verschlechtert hat, aber auch zwischen 13,1 % und 60,8 % der Befragten (eigene Berechnung) an, dass sich ihr Zustand verbessert hat. In den Patientenbefragungen zur CBT gabenzwischen 7,1 % und 38,0 % der Befragten an, dass sich ihr Zustand nach der CBT verschlechtert hat und zwischen 7,0 % und 56,9 % der Befragten (eigene Berechnung) an, dass sich ihr Zustand verbessert hat. References 132 refers to: 132. Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome [online]
@Tom Kindlon If you would be willing to write a short comment, I can help with the translation and paperwork. There are two ways to do it. You could write a general critique or about specific parts of the text. When you want to talk about specific parts it has to be a specific format. Chapter, Page, Headline: XXXX Original Text: XXXXX Comment: XXXX Recomended changes: XXX this is the form it has to be send in: https://www.iqwig.de/unterlagen_stellungnahmen/n21-01_vorlage-fuer-stellungnahme_vb.docx Note: all the cited papers that are not cited in the original report have to be submitted as pdf and named and numbered according to the bibliography. If you like, i could translate the word document for you as well. It might be easier for you to work in a translated version. I could translated translate your input back into German and put the text into the original document and draft a email text for you to send in the comment.
I think I’ll just send in the following. If I’m too negative about their current paragraph, they might stop referring at all to the survey data from my paper and I think it’s useful if it is referred to. I have various things I’m working on and it’s hard to do things in German, so I think I will leave it at that. Chapter, Page, Headline: 6, 157, Argument: „fehlende Berücksichtigung von Patientenbefragungen“ Original Text: Zudem lassen sich aus der Publikation des irischen ME/CFS-Betroffenenverbands [132] auch andere Interpretationen ableiten, als die von Friedberg et al., wie die nachfolgenden Ergebnisse demonstrieren. In den zitierten Patientenbefragungen zur GET gaben zwischen 28,1 % und 82,0 % der Befragten an, dass sich ihr Zustand nach einer GET verschlechtert hat, aber auch zwischen 13,1 % und 60,8 % der Befragten (eigene Berechnung) an, dass sich ihr Zustand verbessert hat. In den Patientenbefragungen zur CBT gabenzwischen 7,1 % und 38,0 % der Befragten an, dass sich ihr Zustand nach der CBT verschlechtert hat und zwischen 7,0 % und 56,9 % der Befragten (eigene Berechnung) an, dass sich ihr Zustand verbessert hat. 132. Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome [online] Comment: I have now calculated the means for this set of surveys. I think it would be useful if this data was added. Recommended changes: Add: The author contacted us to inform us of the means he calculated for the data from the patient surveys he examined. A mean of 51.2% reported that their condition worsened after GET, with 32.2-32.9%* reporting their condition improved. A mean of 19.9% reported that their condition worsened after CBT, with 28.6% reporting their condition improved. * The author said because of one source, the data doesn’t allow a more accurate estimate So @tmrw if you could translate the sentences in blue into German in the next few days, that would be excellent. When the sentences in blue are translated into German, I will try to fill in the form. Is "data" used as a singular or plural word in German? Please use the form that is generally used and if it is used in plural form, change this sentence "this data was added" to "these data were added".
Hi Tom, It is fascinating how good deepl has become. I had to do only minor changes and they messed up a number, which is fascinating. Data is is plural in German. I have contacted a colleague who is a researcher, as I am not quiet sure if „Satz von Umfragen“ is really the best translation. I would have used the English word „set“ as well. I will be back with her feedback. If any other German speaker has any improvements, feel free! Comment: I have now calculated the means for this set of surveys. I think it would be useful if this data was added. Ich habe jetzt die Mittelwerte für die Auswahl von Umfragen berechnet. Ich denke, es wäre nützlich, wenn diese Daten hinzugefügt würden. Recommended changes: Add: The author contacted us to inform us of the means he calculated for the data from the patient surveys he examined. A mean of 51.2% reported that their condition worsened after GET, with 32.2-32.9%* reporting their condition improved. A mean of 19.9% reported that their condition worsened after CBT, with 28.6% reporting their condition improved. Der Autor kontaktierte uns, um uns die Mittelwerte mitzuteilen, die er für die Daten aus den von ihm untersuchten Patientenumfragen berechnet hat. Im Durchschnitt gaben 51,2 % der Patienten an, dass sich ihr Zustand nach der GET verschlechterte, während 32,2 bis 32,9 %* berichteten, dass sich ihr Zustand verbesserte. Im Durchschnitt gaben 19,9 % an, dass sich ihr Zustand nach der CBT verschlechterte, während 28,6 % berichteten, dass sich ihr Zustand verbesserte. * The author said because of one source, the data doesn’t allow a more accurate estimate Der Autor gab an, dass die Daten aufgrund einer einzigen Quelle keine genauere Schätzung zulassen Edit: I got feedback and edited the first sentence.
I have now tried to fill in the German form which hopefully some of you will be able to see elsewhere to check that I have done it correctly.
