Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

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keepontruckin

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I think that if the publication is clear that the cause is shown we should in our own way contact a politician(s) telling about this opportunity - # people could get back to work or whatever angle you take. It doesn't have to be a long letter. Sometimes just s couple of lines is just as or more effective. If it is really good news, i am going to forward the article to show them the opportunity for x numbers of people with no time to wait. I will send it the day of release.
 
lauluce

lauluce

as long as you manage to stay alive, there's hope
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keepontruckin said:
I think that if the publication is clear that the cause is shown we should in our own way contact a politician(s) telling about this opportunity - # people could get back to work or whatever angle you take. It doesn't have to be a long letter. Sometimes just s couple of lines is just as or more effective. If it is really good news, i am going to forward the article to show them the opportunity for x numbers of people with no time to wait. I will send it the day of release.
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indeed that's an excelent argument, a huge amount of people with different talents an abilities could be restored to society, allowing for a collective improvement
 
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raghav

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perrier said:
Yes, I read that comment; for those who are bed bound and in acute suffering this time frame is not really practical; there should be more urgency...
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@perrier Once we know what is the exact cause of the mito fission (the molecule(s)) causing it and the diagnostic marker which Prusty is going to publish in a month's time do you think people will keep quiet ? Prusty in his email to Sonja Kohl has hinted that there are FDA approved drugs available in the market. So once the safety of the drug(s) is assured we can ask our physician to try it before FDA approval. I know some people will say be cautious. But how many of us have tried off label usage of potentially powerful drugs for this disease. So dont worry within 2 years or less the picture will be clear and you dont have to wait for FDA's approval if your doctor is convinced enough that it is worth a try you can try it.

I have tried Nancy Klimas's protocol in full (Etanercept and Mifepristone) but it did not work. I tried Copaxone (generic called Glataxone) but that also did not work. So I hope you get the point. Dont loose heart. Prusty has got to the heart of the problem and everybody will know about it in a month's time and it will be peer reviewed by other scientists mostly critics and the results will be known. Till now we have been wildly throwing pills at us in an unscientific manner purely thinking luck will favour us. Now it will be different. We will have specific pre approved drugs to try. You dont have to wait till FDA approves it. People outside USA will try it like myself and will report the effficacy of the treatments. So dont loose hope. Just hang in there.
 
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Wally

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@raghav - Can you clarify your post? Did the publisher ask him to conduct a couple more experiments after he posted his 2/22 tweet? Once his experiments are complete, which you state will take about 2-3 weeks, is there an approximate timeframe for when the paper will be published and/or it will be uploaded to bioRxiv?
raghav said:
Folks, The publisher has asked Prusty to conduct couple more experiments before publishing the paper. He is working on it full stream. It will take 2-3 weeks and then it will get published. So lets wait.:thumbsup:
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raghav

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In yesterday's mail from him he told he has to do a couple more experiments to satisfy the publisher(Peer reviews perhaps). Anyway he is participating in the UK ME / CFS conference by remote. He may present his paper there when the cameras are turned off. This is today's tweet at 4:13 am. So lets wait for March 11th when he gives his remote talk. But it seems all the seats are booked. It is paywalled.
 
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raghav

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Prusty does not have a lab of his own. He is not a tenure track scientist(I dont know what it means in Germany). So I presume he needed the 30k euros and Sonja Kohl arranged for the crowd funding. So my guess is the fund is for doing the experiments asked for by the publisher. IMHO if the publisher drags his feet Prusty will go public with his paper. This is as per his tweet posted by @Wally I am just trying to connect the dots. I cant ask Prusty intrusive questions. That is not ethical. So lets wait till March 11th. This seems to be a new development.
 
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raghav

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https://www.eventbee.com/v/uk-cfsme...ience-conference/event?eid=105083142#/tickets
I am reproducing the portion of the page where it says they may or may not film unpublished data. Lets wait and watch.

Filming: With speakers' permission, we aim to film each presentation to broadcast live and/or upload as a recording following the conference. Please note that, due to the presentation of unpublished data, some speakers decline to be filmed. Details of livestreaming and/or filming will be made available nearer the time at https://www.actionforme.org.uk/research/cmrc/
 
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Hopeful1976

Senior Member
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346
I asked omf on Twitter about their input into prustys work. This was their reply:
Screenshot_20200307-063611_Chrome.jpg
 
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Inara

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hmnr asg said:
Germany is one of the best places to get funded as a research scientist.
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That is not correct. It is NOT easy to get a grant in Germany, especially not from the government. There are research key areas, which are defined in guidelines, and if you want money for sth that falls not into such a key area it gets difficult. The key areas right now definitely do not include ME research. Plus, don't forget politics here. Also, it is quite a labor to apply for a grant. It's not just filling out some forms et voilà. Many institutes lack the manpower. Ok, application should be a priority because without money, no research. But researchers most often know their chances of getting a grant pretty well, so you don't apply if the chances are bad, and if you want money for ME research - forget it.

This creates the impression Bhupesh et al. don't get funding because their research is bad. One can't make this conclusion from the fact that they get no funding.

Edit: Sorry, didn't see the moderation issues at the time of posting...I just wanted to clarify.
 
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