Research news from Bhupesh Prusty

dreampop said:
I'm actually kind of surprised we haven't figure out that yet after what feels like 3-4 years. But, perhaps that is due to my naivety in biomedical research.
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Science takes a long time, especially in an underfunded field such as ME. Things would be different if the need for ME research was treated with the same level of urgency as coronavirus is currently.

Having said that
FMMM1 said:
Ron Davis, in conversation with Ben H (December 2019 - OMF News), explains that they are upgrading the nano-needle to fractionate the plasma - $30,000 to change it to a multichannel device/multiple samples (currently just 2 samples can be run)--- that is how broke ME researchers are!
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Not sure why $30k is an issue for the OMF to find, https://www.omf.ngo/wp-content/uplo...n-Audited-Financial-Statements-12-31-2018.pdf
 
dreampop said:
I'm just very unsure that the something in the blood is causing the me/cfs symptoms and not way down stream leading to some minor changes. I still think it'll be useful to figure out what it is, and maybe reverse engineer that to find out what's going on.

I'm actually kind of surprised we haven't figure out that yet after what feels like 3-4 years. But, perhaps that is due to my naivety in biomedical research.
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Further thought; as well as identifying the something in the blood, a GWAS study would be useful to identify cause; Chris Pointing has applied for UK Government funding for this. £2 million for the GWAS study roughly £10 for each person in the UK with ME --- lets hope the UK Government funds that. So yes lots of ways to move ME research forward --- funding is the problem!

@Simon M
 
FMMM1 said:
a GWAS study would be useful to identify cause
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Just to clarify, it's highly unlikely that the GWAS, by itself, will identify the cause. In my opinion, the likely result is that it will offer up a number of targets that will need to be researched further to determine their importance.

FMMM1 said:
£2 million for the GWAS study
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It's actually £3.5 million.
 
strategist said:
He also said that in his opinion it is dangerous for PWME to donate blood.
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just out of interest have SW, MS or TC ever been asked why pwME / CFS are not allowed to donate blood in the UK?

(and before they or someone says it's because they don't want to make patients worse, that's not what it says on the NHS site)

"ME : Post Viral Fatigue Syndrome
I am sorry but unfortunately, we cannot accept a donation if you have this condition or if you have previously had the condition even if you are now recovered."
https://my.blood.co.uk/knowledgebase/Index/M
 
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They justify it by saying that anyone who is actively ill with anything should not give blood because it is potentially dangerous to them, not because people with ME actually have a physical disease, perish the thought. The slight feeling of fatigue anyone gets after donating blood would send our damaged psyches into overtime so it is a protection for us.

I think the blood transfusion people are wary because of past scandals so won't take any chances. It is very unlikely it is because anyone in authority thinks we have a transmissable disease.
 
The blood donation ban came in 2010 on the back of the XMRV scare. Most countries banned people with ME from donating and all gave the potential threat of XMRV as the reason. The UK introduced the ban at exactly the same time but wouldn't admit it was because of XMRV because it would go against the "State Truth" that ME is psychological so they claimed it was for the patients benefit to protect them.

https://www.bbc.co.uk/news/health-11465723
 
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Andy said:
Just to clarify, it's highly unlikely that the GWAS, by itself, will identify the cause. In my opinion, the likely result is that it will offer up a number of targets that will need to be researched further to determine their importance.


It's actually £3.5 million.
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Yea the [Apolipoprotein E (APOE)] gene association with Alzheimer's was known for 25 years (heading online). That is how long it took before they figured out the clue that gene provided to the disease mechanism! Wasn't sure I wanted to put that (25 years) in my earlier post -- normally you can rely on me for negativity!
 
Andy said:
Science takes a long time, especially in an underfunded field such as ME. Things would be different if the need for ME research was treated with the same level of urgency as coronavirus is currently.

Having said that

Not sure why $30k is an issue for the OMF to find, https://www.omf.ngo/wp-content/uplo...n-Audited-Financial-Statements-12-31-2018.pdf
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The new machine doesnt cost $30k. The old one did they use right now. And the problem is the old one is a super specialized tool which is not needed for Cfs. The next problem is the old machine needs 24h for a sample. So they build a new one which should cost $200 and can take 100-200 samples a day. So the only Problem right now is time to build it. Thats what Ron said. But take this all with a grain of salt. Because he is telling this story for 3 years now...
 
Hopefully he will finally crack the puzzle. That would be amazing.

It's a signalling problem. Whether the signal is right or erroneous remains to be seen. Right would mean that somewhere there are infected cells sending out these signals to contain the infection. Erroneous would mean that some parts of the immune system are continuing to fight even when the war has long ended.

At least that seem to be the two least far fetched explanations.
 
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