That is why I wanted to participate in the study of the Middle East

●Discussion Lena Kempengren Vold

When patient Lena Kempengren-Fold was going to participate in a study conducted by NTNU on me, she was expelled. Here she describes why she wanted to participate.

This discussion post It is a response to Jørgen Svarstad in Khrono’s article “The ME patient was excluded from the study», which was published on Friday, October 27th. I am that patient.

I want to say first I was pleasantly surprised by the article, which was about being excluded from the LP study, after initially being included. It was more neutral than expected, see my previous impression of Middle East coverage in general.

After you got me I don’t deal well with time pressure. Spontaneous communication that requires thinking works poorly. The header needs time to process things, so fast data doesn’t work, especially when printed. Then I myself must be the master of the situation and progress.

After reading the article I would still like to express my opinion on this matter.

I’ve been asked About my motivations for participating in the aforementioned study. The motivation is that all stones should be turned over in an attempt to improve. Maybe I’ll pick up some tools that might come in handy in the future? After working in research settings for 35 years, I have probably acquired a certain critical sense. I like to ask questions, and I think skepticism is an important part of science. Both question one’s own understanding and assumptions, and critically scrutinize the understanding of others.

That I have this doubt I wouldn’t say I’m not excited to try a method and I don’t have a strong desire to get better. At the same time, I know that what has been tried so far has yielded only very limited results. This makes it difficult to be convinced of the effect even before trying something.

This is what I wanted To test as a study participant. I honestly answered all questions asked at the initial admission interview and were deemed worthy of inclusion by both the research nurse, who conducted the interview, and the neuropathologist who confirmed the ME diagnosis and quality, and checked the inclusion and exclusion criteria. I have signed the Declaration of Consent and provided answers to the first review of the recurring questionnaire, but I do not yet know whether I have been placed in the waitlist group or the group that will take the course immediately.

This was the news If my contribution reaches the same colleague, I will be excluded from the study again. I cannot understand this exclusion as anything other than the result of the bias of colleagues (and perhaps others in the research group), rather than my own. That a 60-year-old woman, now suffering from ME, should pose a threat to the HSE or be expected to sabotage the researcher during her course, is mostly comical, if not an alarmingly recognizable connection to the surrounding environment. With it. study, and with such a potentially serious follow-up of the patient group.

important point With this person the studyWhere a patented alternative method is used

Lightning Process® is that the patient must meet the CCC criteria (Canadian Consensus Standards). This is a diagnostic group that assumes the basic symptoms Bim, (post-exertional malaise), which is (often slightly delayed) worsening of symptoms after minor exertion, including, but not limited to, fatigue. If the symptoms of PEM are missing, there is no ME as defined by the CCC criteria, but another form of fatigue problem.

As the results Since this study is intended to be applied to Middle Eastern patients with PEM, it is reasonable for the research group to expect that participants who were introduced to the research field on an international basis would have some doubts. If you only receive people who do not express any hint of doubt as to the positive effect of the method, the study will have a major limitation in terms of whom the results should be valid for, as I see it.

I will study LP Give NAV a functional tool? The text in the study application suggests that motivation and purpose are what make the carefully selected list of participants most problematic:

“CSF/ME is a A difficult health problem as well as a societal problem. In recent years, the number of people diagnosed with CFS/ME in Norway has been reported to have doubled. The group represents a challenge to the healthcare system, the municipality and the Norwegian Labor and Welfare Agency (NAV). According to new figures, Nav pays NOK 100 million per month to cover permanent disability expenses for people with CFS/ME. The municipality bears expenses in the form of care, rehabilitation and other measures.”

In this study Applicants who the scholarship holder believes are not convinced of the effectiveness of the method appear to be excluded. The “evidence” of apparent suspicions is taken from social media. So; For whom are the study results really valid? And what happens if we end up requiring Nav to participate in LP courses as part of rehabilitation before applying for disability?

“Biomedical Camp”
Which the journalist wrote gave the “LP study” some resistance, including from health authorities in countries such as the USA (2014, 2015, 2016), Holland (2018), Belgium (2020), Great Britain (2021), United State (2023) and Germany (2023). Obviously, all Middle Eastern patients who, on social media or in other communications, express confidence in comparative evaluations of the evidence in these countries will be excluded from participation in this study. The above knowledge summaries require caution when using cognitive behavioral therapy and graded training as trauma treatment. NICE guidelines (UK 2021) directly advise against the use of Operation Lightning as a treatment for ME patients with PEM.

Directly and next of kin are also affectedWith this background, I think it would be very concerning, from a patient safety perspective, if the endpoints of the study indicated a positive effect of the method and one concludes from this result that LP can make ME patients with core PEM symptoms healthy, as long as they follow the method. .

Editor’s Note: Before publication by Khrono The case is on October 27 On the exclusion of Lena Kjempengren-Vold from the study, Kjempengren-Vold was offered to come up with her version of the matter. She then chose to give a short comment, and subsequently sent Khrono this post.