30min lecture of Michael VanElzakker, PhD, Harvard Medical School

SWAlexander

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Special guest at symposium Fatigatio: Follow the 30min lecture of Michael VanElzakker, PhD, Harvard Medical School; "Neuroscience in ME",
English version at 04/09/2021 at 4.30 pm CEST.


@MBVanElzakker

#MECFS #LongCovid #LongCovidKids #FT2021FatigatioeV
 

perrier

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I watched it already. In my opinion, the most important part is when he explained how the vagus nerve transports virus or bact. to the brain. Finally, a neuro explains the vagus nerve function - the connection from the gut to the brain stem.
and? what do we do? I am tired of so many competing theories from every corner, and no emerging consensus. We have a young generation being sacrificed. And this is unacceptable. I don't know if this chap is a prof, or researcher, or what, but generally academics do not usually have fire under their seats; they work for universities, and live on salaries and grants, and they are not part of the business model which has results as an imperative. I know, I spent my whole life in the academy, so I know--though the area was humanities. But I suppose we can argue, that here we are dealing with Nature, and that is the great mystery.
 
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Boba

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and? what do we do? I am tired of some many competing theories from every corner, and no emerging consensus. We have a young generation being sacrificed. And this is unacceptable. I don't know if this chap is a prof, or researcher, or what, but generally academics do not usually have fire under their seats; they work for universities, and live on salaries and grants, and they are not part of the business model which has as an imperative results. I know, I spent my whole life in the academy, so I know--though the area was humanities.But I suppose we can argue, that here we are dealing with Nature, and that is the great mystery.
Agreed. I‘m 37 and bedridden since 7 months. This is madness. Me whole life is destroyed and nothing is happening.
 

SWAlexander

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and? what do we do? I am tired of some many competing theories from every corner, and no emerging consensus. We have a young generation being sacrificed. And this is unacceptable. I don't know if this chap is a prof, or researcher, or what, but generally academics do not usually have fire under their seats; they work for universities, and live on salaries and grants, and they are not part of the business model which has as an imperative results. I know, I spent my whole life in the academy, so I know--though the area was humanities.But I suppose we can argue, that here we are dealing with Nature, and that is the great mystery.
While I agree with you on the part of “only research and academia” we have 2 choices; give up or fight.

As we all know by now, science without action is worth not much. Doctors keep on misdiagnosing or even prescribe harmful medication.

Since not even the CDC has not updated their meager ME/CSF guidelines, the “Open letter to the Lancet”, Dr. Davis was one of the signatories, needs political action now.

Suggestion: Let´s find four representatives who are “Open letter to the Lancet” signatories and make an appointment in the White House, - and only with President Joe Biden.

To move ME/CSF forward I suggest the same pattern for every county.
 

minimus

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I don't know if this chap is a prof, or researcher, or what, but generally academics do not usually have fire under their seats; they work for universities, and live on salaries and grants, and they are not part of the business model which has as an imperative results.
VanElzakker is brilliant, iconoclastic, and sympathetic. He said he became interested in ME/CFS because one of his friends disappeared and he later found out it was because she had developed severe ME/CFS. If he were really career oriented and only interested in academic tenure and obtaining grants, he would avoid ME/CFS entirely given how poorly funded and stigmatized it is. The main reason ME/CFS has no effective treatment is long-term institutional neglect by governments and the medical and scientific fields. If anything, we should be grateful to researchers like VanElzakker, not blame him for not having developed a breakthrough treatment in the relatively short period he has been involved in the field.
 

perrier

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VanElzakker is brilliant, iconoclastic, and sympathetic. He said he became interested in ME/CFS because one of his friends disappeared and he later found out it was because she had developed severe ME/CFS. If he were really career oriented and only interested in academic tenure and obtaining grants, he would avoid ME/CFS entirely given how poorly funded and stigmatized it is. The main reason ME/CFS has no effective treatment is long-term institutional neglect by governments and the medical and scientific fields. If anything, we should be grateful to researchers like VanElzakker, not blame him for not having developed a breakthrough treatment in the relatively short period he has been involved in the field.
My comments were not specifically directed at this brilliant fellow. I was really making a general comment. We have a serious crises. Young people who are bed bound and vey sick, and their lives are ruined. There is not really the level of urgency in the scientific/research communities required, nor is the field being flooded with great numbers of researchers. Considering the number of sick people, I would not hesitate to say, there are not enough researchers on this case. And I wish to emphasise this. I have no quibble with your desire to be grateful. All I see is a sacrificed generation. I am not blaming Van Elzakker, but I am blaming the list you provide: government, medical/scientific researchers.
 

SWAlexander

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My comments were not specifically directed at this brilliant fellow. I was really making a general comment. We have a serious crises. Young people who are bed bound and vey sick, and their lives are ruined. There is not really the level of urgency in the scientific/research communities required, nor is the field being flooded with great numbers of researchers. Considering the number of sick people, I would not hesitate to say, there are not enough researchers on this case. And I wish to emphasise this. I have no quibble with your desire to be grateful. All I see is a sacrificed generation. I am not blaming Van Elzakker, but I am blaming the list you provide: government, medical/scientific researchers.
I admire scientists. But, I´m puzzled by how little science is used in medical practice.
Example: Dr. Jennifer Doudna, described in the book "The Code Breaker", discovered CRISPER cas 9 gene editing.
A methylated single strang DNA could be repaired with CRISPER cas 9. But, according to health insurance, too expensive. My question was, how much will it cost over a lifetime to take care of a patient with sickle cell anemia. The same for diabetics etc.
 

SWAlexander

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Special guest at symposium Fatigatio: Follow the 30min lecture of Michael VanElzakker, PhD, Harvard Medical School; "Neuroscience in ME",
English version at 04/09/2021 at 4.30 pm CEST.


@MBVanElzakker

#MECFS #LongCovid #LongCovidKids #FT2021FatigatioeV
The video seems no longer available. I will contact Fatigatio.
 

SWAlexander

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The video seems no longer available. I will contact Fatigatio.
Answer from Fatigatio:
As I understand it, the creation of the database with register should come from the Charité, as well as the care research project, possibly in cooperation with the children's clinic in Munich. You can possibly ask for more information from Prof. Scheibenbogen o. Behrends.

I will write to Prof. Scheibenbogen tomorrow.
 

SWAlexander

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The video seems no longer available. I will contact Fatigatio.[/QUOTE

Answer from Ulrike Ruprecht, Fatigatio e. V. Geschäftsstelle

“The videos are now viewed, cut and edited in order to later make them available as a DVD or file on a USB stick. You can then order them through our shop, but experience has shown that this can take until winter. They can then be called up again in the edited version.”