In reply to the response of the Letter to the Editor regarding Lipoedema – myths and facts, Part 1 and Part 5. European Best Practice of Lipoedema – Summary of the European Lipoedema Forum consensus.
Dr. Tobias Bertsch and the journal Phlebologie have made the decision to publish several factual inaccuracies and libel in a recent thread of Response Letters [1]. While posted under the camouflage of scholarly discourse, this publication takes opportunity to engage in undignified and unprofessional attacks on U.S. based scientists and philanthropic efforts. These opinions are offered in the absence relevant knowledge of: these organizations’ governance; grant processes and grantmaking in general; and “how ‘science’ works in the US”[1]. The below points are in the order they are discussed in the Response Letter:
· The author conflates the work of 3 independent organizations: Fat Disorder Research Society (FDRS), a patient-run patient support group www.fatdisorders.org; the Lipedema Foundation (LF) www.lipedema.org , and University of Arizona (UA) www.arizona.edu .
· LF is not a “patient organization”; we are a research funding institution. We have funded 33 projects totaling $7.2m. Of course, our mission is to ultimately help all people with Lipedema, and we do have a Registry www.lipedema.org/registry for patients and controls that supports our research work. But, overall, we spend less than 10% of our effort and money on typical “patient organization” work and non-research related programs. Notably, the management and administrative expenses of the organization are entirely supported by the Founder. Thus allowing operations free from commercial or other external influences.
· Felicitie Daftuar has not been involved in Fat Disorder Research Society (FDRS) or its work since 2018. She stepped down from an active President role after resurrecting the organization in 2015, and retired from the board in 2018 [2].
· Dr. Karen Herbst was funded by the Lipedema Foundation from 2015 until she retired from UA in early 2020.
· The author conflates: Felicitie’s work with the patient organization Fat Disorder Research Society (FDRS) which ended in 2018; with her work with the Lipedema Foundation; and with the work done by Dr Karen Herbst. The author does not understand the different groups nor their relationship to each other. The author seems to be under the impression that we all work closely together and have a singular opinion on Lipedema; we do not.
· The author mistakenly accuses Lipedema Foundation of only caring about “the very narrow US-American view of lipedema”. In fact, Lipedema Foundation has funded 33 projects, including several independent projects outside of the U.S. www.lipedema.org/research-grant-geography-alphabetical: St Georges in London www.lipedema.org/genetics-sgul-ostergaard-mortimer-research-grant ; 3 institutions collaborating in Australia www.lipedema.org/genetics-unisa-flinders-harvery-scott-piller-haan-research-grant ; Haegerling now in Germany www.lipedema.org/st-georges-london-vipar-light-sheet-microscopy-haegerling-research-grant ; Bauer and Duscher in Germany www.lipedema.org/rnaseq-bauer-linseisen-duscher-research-grant ; and Gousopoulous now in Switzerland www.lipedema.org/understanding-lipedema-onset-and-progression . The 33 projects constitute a wide range: whole person / QoL; 3 genetics projects; multiple fields of biology: adipose, lymphatics, blood, nerve, stem cell, ECM, -omics, exosomes, etc; multiple imaging modalities; and other projects such as machine learning.
· The author’s belief that there is a US narrative and a European way overly simplistic. As evidenced by the recent discourse in prominent conferences (AVLS, NLN, etc), there is divergence depending on practitioner, independent of nationality.
· LF does not “Ignore[] the problem of obesity”, “the psychological burdens on women [with Lipedema]”, nor “the complexity of the disease.” Our mission is to develop a *biological* test to definitely diagnose Lipedema (thereby distinguishing it from obesity). We believe a diagnostic test is the very first step to reduce the psychological burden and to understand the complexity of the disease.
· LF has been fully independent from the Standard of Care work since the initial April 2019 meeting. Due to travel logistics, that meeting took place alongside – but independent of -- an FDRS conference. Just one former LF employee was invited to attend the meeting, but that person was no longer working for LF the following month [3].
· Neither Felicitie Daftuar nor Lipedema Foundation were involved in any way in the first Letter to the Editor [4].
· “Research… that is independent of interests” simply does not make sense when applied to LF. LF is interested in funding well-designed projects that fit within our Research Roadmap. In order to determine what those projects are, we fairly evaluate all submitted Letters of Intent using principles of industry standards for grant management. We assess proposals based upon study design, skill of the researcher teams, access to people/samples, among other criteria. We do offer opinions to improve study design and logistics consistent with practices of any funding agency, but the research design and execution are the responsibility of the investigators. This collaboration is the characteristic that distinguishes a research funding agency from an investment banking enterprise.
However, the most important clarification to make is the nature of work we fund. Lipedema Foundation funds scientific and biological research. We do not dictate the outcomes of the research: that would be foolish and self-defeating. In fact, we are at the exciting part of scientific research where many of our funded studies do not agree with each other. For example, Gousopoulos found no lymphatic structural defects, but Herbst did. Other unpublished data we've seen is similarly conflicted on lymphatics and other very important topics. This is where science gets interesting, and more studies and more time will eventually answer these questions. Good work will get published in good journals over time.
Our business evaluating hypotheses. We have tried to read the “myths and facts” series, but the arguments are poorly constructed and contain logical fallacies. The central hypothesis — found in Myths parts 1 and 2 — that women, being crazy, eat too much, become obese, and develop lipedema is not a hypothesis we will choose to explore. We cannot take the time to dissect the dozens of logical fallacies and scientific misrepresentations that are in Parts I-V, the JWC Consensus article or the Letters in response to these articles authored by Dr Bertsch and colleagues because they are too numerous. We appreciate the other groups who have attempted to submit responses to these documents.
References
[1] Bertsch T, Ehrbacher G. Response to the Letter to the Editor regarding Lipoedema – myths and facts, Part 1 and Part 5. European Best Practice of Lipoedema – Summary of the European Lipoedema Forum consensus. Phlebologie 2020; 49: 31–49. Phlebologie 2020. Doi: 10.1055/a-1250-3334
[2] www.linkedin.com/in/felicitie
[3] www.linkedin.com/in/erik-lontok
[4] Herbst KL, et al. Letter to the Editor regarding Lipoedema – myths and facts, Part 1 and Part 5. European Best Practice of Lipoedema – Summary of the European Lipoedema Forum consensus. Phlebologie 2020; 49: 31-49. Phlebologie 2020. Doi: 10.1055/a-1217-0961
Correspondence
Felicitie Daftuar
Founder & Executive Director, www.lipedema.org