Der "Brandbrief" von George Ebers (Buchrevision und Recherche)

Marc , Montag, 06.01.2020, 17:16 (vor 1564 Tagen) @ W.W.

Die korrigierte Version:

Dear Mr. Ebers,

since a long time I appreciate your work on MS. As example I want to quote your article in Neurology 2008: “Disability as an outcome in MS clinical trials”, where you stated:

Clinical surrogates of unremitting disability used in trials of relapsing-remitting multiple sclerosis cannot be validated. Trials have been too short or degrees of disability change too small to measure the key outcomes.

I am a German neurologist and have spent a lot of time in MS. My impression has always been that neurologists tend to cast a bad light on the natural history of MS and draw a poor picture of its prognosis. So I frequently tangled with the German MS Society.

So I was very happy that someone in our MS-forum draw my attention to your open letter you addressed to the EMA 2013. I must confess that I never heard of it before.

Particulary impressed me that someone so familiar with MS research and clinical studies could express his serious concerns so impressively. My Point is: I see huge Problems when the German MS Society recommends in its guidelines a hit-hard-and-early-strategy for newly affected,

I would therefore like to take this opportunity to ask you the following questions:

- Do you think that the "basistherapy" (this is a misleading Notion, what is used in the German MS-literatur) with betainterferons, Glatirameracetat, Fingolimod etc. has had a desirable effect on the course of MS?

- Would you agree, that more aggressive therapies such as Natalizumab or Ocrelizumab are not a promising option to treat MS?

- Is it correct to define a "benign MS" as a MS, which has 15 years after beginning an EDDS >= 3,0?

- Would you agree with SJ Pittock, who found in the Olmstedt County study that MS worsens naturally (i.e untreated) by an average of 1.0 EDSS points every 10 years?

Me and my 'combattors' in our MS-Forum would be very glad and thankful to hear of you.

Best regards,

Hallo Herr Weihe,

ich gehe davon aus, dass dies noch die aktuelle Version ihres Anschreibens an Prof. Ebers ist und habe versucht, es in etwas flüssigerem Englisch umzuformulieren:

Dear Professor Ebers,

I am a German neurologist who has dedicated his professional life to the treatment of patients with MS.

Over the years, I have increasingly noticed that when other neurologists in hospitals and practices in Germany would discuss next steps with the newly diagnosed MS patients, they tended to generate an overly dramatic picture of the possible desease activity. In my point of view, this pessimism was, in fact, simply a ploy to convince young patients to start desease modifying treatments.

I was also unhappy with the German MS Society (DMSG) who actively supported this approach with communication materials and events. As a result, I have had frequent run-ins with the DMSG over the years and even had to face them in court when they presented me with defamation law suits

This is why I have been always very appreciative of your work. I recall in particular your article in Neurology 2008: “Disability as an outcome in MS clinical trials”, where you wrote:

"Clinical surrogates of unremitting disability used in trials of relapsing-remitting multiple sclerosis cannot be validated. Trials have been too short or degrees of disability change too small to measure the key outcomes."

This had always been the essence of my thinking. Unfortunately, I have felt very much left alone here in Germany with my thinking that something was wrong in the system and that desease modifying therapies were really not what everyone here praised them to be.
I was therefore very happy when a patient I know recently mentioned your interview in the movie produced by Matt Embry and also produced a copy of your open letter to the EMA in 2013. I must confess that I never heard of your letter before. Noone in Germany has apparently had an interest in discussing your very valid concerns here.

While reviewing your materials, I was particulary impressed by how well you were able to formulate the serious concerns that I have harboured in me for so long. As written, I can recognize even today huge conflict of interest problems when the German MS Society promotes German neurological guidelines which recommend that all patients should use DMTs!

I would therefore like to take this opportunity to ask you the following questions:

- Do you still think that CRAB DMTs - which are called "basis therapies" in Germany (in itself a misleading notion) have any desirable effect on the MS progression for individual patients?
- Do you believe that more aggressive therapies such as Natalizumab or Ocrelizumab are better treatment options?
- What would your idea of a benign MS be? Would you consider a patient with a disability score of less than EDSS 3.0 fifteen years after diagnosis to have a benign course?
- Would you still agree with the results of the 20-year population-based follow-up study authored by SJ Pittock in 2004 that untreated MS patients would see on average a decline of 1.0 EDSS points every 10 years? (https://www.ncbi.nlm.nih.gov/pubmed/15293286)

Me and the like-minded participants in my MS Blog would be very happy and thankful to hear from you!

Best regards,

Wie breits geschrieben sollten sie dieses Anschreiben ausdrucken und an die postalische Adresse senden, die ich ihnen bereits per PN zugesandt habe (Haben sie meine PN erhalten?)

Generell hielte ich es für sinnvoll, wenn sie sich vor dem Absenden nochmals überlegen würden, wonach sie konkret beim Austausch mit Prof. Ebers suchen und was sie mit seinen Informationen hinterher machen wollen. Wollen sie z.B. auch seinen 2013 Brief zitieren?

Letztlich hoffe ich, dass Prof. Ebers sich auch die Zeit nehmen wird, um ihnen zu antworten. Ich weiß, dass er mittlerweile über drei Ecken in Kenntnis gesetzt wurde, daß jemand aus Deutschland sich mit ihm in Verbindung setzen wollte. Bitte senden sie den Brief zeitnahe, solange er sie noch in Erinnerung hat...